Sunday, March 18, 2007 6:30 PM CDT
My new photo isn't a pretty one; it is my burned arm -- burned due to VNS negligence. There is even more to this story, which I will post later today or tomorrow. I would just like everybody to think about one thing right now: If VNS and their home-care agency csn do these things to me -- a young-ish, intelligent, educated woman, what must they be doing to elderly, senile people who are afraid to speak out?
Saturday, March 17, 2007 10:59 AM CDT
There are two reasons for this update. One is to update and let everyone know once again, that VNS does not “bring the caring home” as they so claim in their TV ads. And the other reason is to have documentation for myself because when Concepts is finalized and I am finally away from VNS and Partners in Care, I am compiling a complaint to send to my new friends at the Healthcare Department up in the New York State District Attorney’s Office up in Albany.
Partners did it again; they did something out of spite to the detriment of me, the patient. Once again, Leslie showed that she doesn’t give a rat’s ass for my welfare. I suspect, although I can’t prove it, that she has been alerted that I am leaving due to VNS in process of preparing to discharge me, and so she is totally disregarding my welfare.
I have two big burns on my right arm. You see, one of the reasons I have to get out of this apartment is the tiny bathroom. It isn’t even large enough for a small transfer chair. So, in order to get into the shower, I have to do an elaborate turn in a tiny space from the toilet to the shower. With my ankle turning and easily spraining, and the space being so tiny, it isn’t easy, but my regular aides know how to do it. Moreover, they know the danger points, like if my ankle starts to turn too much, they swing out the shower chair so that I can sit first and then put my legs over the rim. And then, we have to repeat the process in reverse when I get out of the shower. If this seems hard to follow, then I am making my point. Try explaining to an aide who doesn’t know you, when you can’t speak.
Complicating matters is a pipe on the wall next to the grab bar, which gets very hot when the heat comes up. There too, my regular aides know how to maneuver me so that I don’t hit the pipe when it is hot. So the aide Saturday didn’t know how to maneuver me, and had me pinned up against the pipe just when the heat was shooting through. The more I yelled in pain, the more flustered she became. So I have huge burns, which blistered. Then the blisters opened and, when Ellita came on Sunday morning, she was horrified. She called her supervisor Leslie, to report it. Leslie instructed her to cal Nurse Raisa who said “hmm that’s strange” When Raisa came at 7pm that night, I told her that Leslie refused to fill in Beverly’s absence with my regular aides, so I had a strange aide who didn’t know what she was doing. Raisa’s answer? “Cover the pipe with chux” and she walked out. Chux?! Paper backed by plastic wrapped around a hot pipe? Maybe I should have done that and let my apartment catch on fire. But wait! There’s more!
When Beverly came on Thursday, I learned that she was sick on Thursday, went to the doctor on Friday, and was ready and willing to come on Saturday. When she called to report that she would return on Saturday, Leslie, who was angry with Beverly for calling out for Thursday and Friday, told her “don’t go Saturday. I already gave the day to another aide”. Saturday, the day I got these burns, Beverly could have come to work, but Leslie told her not to. But wait -- it gets even better!
The reason she gave that she couldn’t send any of my regular aides to fill in during Beverly’s absence was that she couldn’t give them any more hours than they had already. And on Friday morning, Lynette, who was already here from Thursday night, offered to stay and do Friday and Leslie said it was “illegal” to work the night shift and then the day shift afterwards. But Lynette got a phone call from Leslie asking her to “help out” and do a fill-in today. Lynette said “but I am working Friday night” and Leslie told her “that’s okay; you can work Saturday all day. I need you to help me out”. So Lynette said “is this for Fern?” When Leslie said it was for another patient, Lynette said she wasn’t available to work today. Why was it suddenly okay for Lynette to work all day after working the night shift. Probably because a bunch of aides saw the weather prediction and called to say they weren’t coming to work today. So all of a sudden it became legal to work back-to-back 12-hour shifts. Hmmm
And my burns? We have been putting bacitracin ointment on and hoping it doesn’t get infected. And they alternately sting and itch, which is driving me crazy. And I pray that my “conversion” to Concepts comes through very soon. I hope my new contact at the NYS Attorney General’s Office can do something to expedite it.
Tuesday, March 13, 2007 10:49 AM CDT
Some of you have mentioned that you have trouble reading this because the text goes over the edge. Caringbridge doesn't give me a lot of freedom with formatting. I also publish this blog at http://www.ferncohen.blogspot.com so feel free to bookmark that page. And you can also subscribe and be informed when I update by cliccking on the "bloglines" icon. This may work better for some of you.
So I wake up yesterday morning and Ellita tells me that one of Gulshan’s patients, for whom Beverly also works a couple of days ago, blabs to her about “Ms. Cohen is going to another agency…etc” I went ballistic, because now it appears that Beverly is talking about my case to another patient….yadda yadda….
Well, what Bev did is more injurious to Ellita, Gulshan, and Lynette who are leaving VNS/Partners in Care o go with me. VNS already knew I am leaving them, but they didn’t know that I am taking the three aides with me. Now it is uncomfortable for the three aides. This too shall pass but when?
So my good friend Mary directed me to someone in the State Dept of Health who will help me to expedite the process of leaving VNS/Partners In Care, and getting onto Concepts -- finally!!
More wheelchair woes. My batteries drain too quickly and I plan to do the last 4 days of Ride For Life, and so I will be riding the wheelchair all day so I need the batteries to be in optimal shape. Well according to Medicare rules, I am not eligible for new batteries until April 30. Ride For Life starts a few days before in Montauk, but because I refuse to pay $358.00 out of my own pocket, and because Ride For Life might not have enough wheelchair-accessible hotel rooms anyway for everybody, I am joining the ride somewhere in Nassau County and following back into Manhattan through Queens. So now to coordinate getting the paperwork through by April 30 and then to arrange to get the batteries installed on April 30p or May 1, so I can join the Ride on May 2. This will be extremely tricky for sure and I may have to cave and chalk up the money….grrrrrrr
Open house again this Sunday from 2-4 and Tim is going to serve whiskey and green beer. I told him to make sure nobody throws up on my floor. But seriously I hope to sell and leave BECAUSE Antoinette from ALSA e-mailed me that they have a $2200.00 slider chair that just came into the loan closet and they are sending it to me. Check it out at http://www.pvcdme.com click on “tub slider”. It won’t fit in my bathroom now but will go in a “normal” tub.
Monday, March 5, 2007 10:12 PM CST
CLINIC VISIT, APT. SALE, SPRING IS COMING,CONCEPTS
My clinic visit went well. The good news is that Dr. Scelsa says my muscle strength is still good, and my disease is still upper-motor neuron affective. Joanna, the occupational therapist says that as soon as I get my new apartment, she will come and evaluate the bathroom. She will be on the lookout for a slider chair that comes into their loan closet, but if they don’t receive one, I will have to buy one out--of-pocket and it costs about $2200.00. it took one of the PALS over six months to get it approved through Medicare. Considering the rate of progression in ALS, it really is criminal that approval takes so long. We recently lost a PALS who was just diagnosed in October, 2006. Although that is an extreme case of fast decline, it is still terrible that there was no tine to get him anything to approve the quality of his short life. The bad news: I am on reduced food intake because I am the only ALS patient who keeps gaining weight instead of losing. So no more chocolate and desserts. I have to supplement reduced tube feeding with pureed fruits, vegetables, and soups.
We have had interest in the apartment. Tim brought in a potential buyer during the week, and he is starting to get calls from the NY Times ad. I hope to get out of here sometime in spring. Life for me is very solitary these days, most of the time, it’s me and an aide. As usual I have adjusted. It is amazing how we adjust to anything. My expectations have gone to nothing and nobody. I expect nothing and I expect to see nobody. The internet and email is how I stay in touch with the world, because nobody has to see what they don’t want to look at. And I don’t have to worry about trying to make the other person comfortable. And this has become okay with me. A friend of mine who has cancer was explaining to me why he doesn’t go to support groups. “I want to go places where nobody knows I have cancer” was his response. I don’t have that luxury; to see me in person is to know I have a disabling illness. But on the internet I can forget my disease and the person on the other end of my email or forum posting can forget too. I expected early on, that people would come and watch TV or a DVD with me on a Saturday night or Sunday afternoon, but that never happened. So I welcome the visits from the bunny rescue friends when they come to tend to Chelsea, or when someone comes by to do my bills, and a weekly visit from Judy, my volunteer through Jewish Federation, who has been helping me with organizing. And that has become enough for me. Holidays mean nothing anymore. I know Easter and Passover are coming, I don’t know when, and it won’t matter. I no longer hope that I have a seder to go to. I am only praying that I can move to the City soon so that I can go outside and see people and watch the action. I will be able to go sit in a park and “people-watch”. This is not what I would have expected, but it is the way it is and the way it will be from now on. I am not getting better; my condition is going to get worse so I have to make my surroundings better. I am at peace with it.
My consumer-directed care aka Concepts is coming together. The aides are having their papers processed, and I am waiting for the day I don’t have to deal with VNS and the nurse-from-hell
Thursday, February 15, 2007 12:20 AM CST
ALBANY What can I say but this was the most exhilarating and empowering thing I have done since ALS! It also makes me regret that I didn’t enter into a career involving government. It is so fascinating to see how all this works. And I am so looking forward to doing DC in May!
I am so grateful to ALSA - The ALS Association-- for making a scholarship available to me so that I could go on this trip. And I am so thankful for the donations of Maddy, Carmen and Kathy Smith for the contributions which paid for Ellita’s time, since VNS would not approve her to be “on the clock” for insurance reasons. Once again, VNS proves that they are more interested in avoiding a lawsuit than their patients. A middle-finger salute to Nurse Raisa,VNS demon-nurse extraordinaire who came last Thursday, gave me the third degree, asked me for the hundredth time if my doctor knows I’m going, then took my blood pressure, saw it was a little elevated, and said that she didn’t think I should go with such elevated pressure! Consumer-Directed care is right around the corner, and I can’t wait to say “buh-bye” to Nurse Witch!!
Ellita and I had access-a-ride drop us off at Penn Station in plenty of time. A stop at the ATM and Auntie Annie’s Pretzels, and we waited at the meeting point. First we met Jody Wiesel, volunteer at ALSA New York, then Jackie Reinhard and Dorine Gordon of ALSA-NY and Cathy Corcoran, former caregiver to her dad with ALS, and of course Kate McNamee who is the coordinator of advocacy at ALSA. The Amtrak trip to Albany is beautiful; it goes all alongside the Hudson River. And I got wonderful treatment by the Amtrak redcaps.
We arrived at about 5:30 at the Crowne Plaza and the handicapped bathroom with roll-in shower was awesome. ALSA took us to dinner at 7, and then we returned to the room to catch the end of the Grammy Awards.
Monday morning, all checked out of the hotel and ready to go at 8:45, we transferred to the State Legislature Building, through security and to room 211 which would be our base for the day. After continental breakfast, we heard a presentation by Dorine Gordon about our mission, which was to garner support for a line item in the NYS budget that would give ALSA chapters in NYC Metro and Upstate NY $640,000 for patient services. This was really a small amount and we were to advise the legislators we met with, that this money would really save the state money because much of it would be used to purchase equipment for the loan closet that could be used over and over in lieu of the patient requesting it through the state and waiting out a period that sometimes even surpassed a patient’s life expectancy.
Next we were given a list of appointments. If the representative him/herself was not available, we would speak with the aide. I went with a representative from ALSA to speak with the aides of my State Senator Toby Ann Stavisky and my Assemblywoman Nettie Mayersohn. I also went with Kate to meet with Audrey Pfeffer, who represents the Rockaways, Ozone Park, and Woodhaven. They asked that we, the patients, tell our story. So I typed a message which I saved in my Mercury saying “Just three years ago I was a teacher of foreign language in a NYC high school. Now I cannot speak or walk. I depend on ALSA for clinic services and they have helped me with equipment from their loan closet.” It was very effective to see a patient from their area. Ms Pfeffer seemed extremely supportive.
We ate lunch and were done by 2. I am so glad I went and look forward to doing more of the same in DC in May. Chris Pendergast from Ride for Life was there too, as were two other patients from the Upstate region. Our train left Albany at 3:15, into Penn Station by 6 and in the door at 7:30. I am sorry I didn’t do this last year.
I signed up Fern’s Fighters for the ALS 2007 Walk to D’Feet at Eisenhower Park on Sunday, September 30. I am hoping to be around and in good enough shape to go. Whether I will have support is another question. Some of the people who were actively involved in my life in 2006 have moved on, and I’m not really in contact with them anymore, and some of my walkers from 2005 were not as enthused in 2006 But even if I get donations online and go with a few good people, I’ve done what I can do.
Tim of Gotham/Citi-Habitats is coming this weekend to take pictures of my apartment to put on my website, and next Wednesday he is coming with a professional photographer to shoot a “virtual” video tour for the site. He already has an interested buyer who wants to see it.
Wednesday, February 7, 2007 1:14 PM CST
if I could get to S.Florida, I would avail myself of this, but
I am posting it for any interested parties
My name is Wayne Lampe and I have ALS. I am part of a study at the USF located in Tampa Florida. I am trying to help spread the word to other ALS patients in the area. The local Tampa ALSA also supports this study. There is no cost to the study. You can contact USF directly.
Center of Excellence for Aging and Brain Repair
Department of Neurosurgery
Phone: (813) 974-3189
Fax: (813) 974-3078
Dr Svitlana Garbuzova-Davis, PhD is a sweetheart from the Ukraine. She takes blood samples every six months. She is working to protect cells and to regenerate them through the use of umbilical cord blood cells. She has provided a more technical description below. You also get to see a Neurologist Theresa Zesiewicz. She is a cute and spunky blond from the Bronx who will fight to get your medical needs. She also serves across the street at the Tampa VA Hospital.
From: Svitlana USF ,Thank you for your interest in helping me find additional patients for my study. Below is a brief rationale for and description of my ALS study:
"Increasing evidence points to involvement of the immune system in ALS. Little data exists on interactions between the immune system and ALS during disease progression. Regulation of immune function in ALS patients could have a protective effect. Determining the particular immune effectors involved during disease progression is essential to future prevention of motor neuron death by cell transplantation. This translational study is designed to "pave the way" for later clinical trials. It is our hypothesis that cord blood cells have a neuroprotective effect through regulation of immune effectors in ALS and this effect depends on disease stage. Monitoring immune system function in the peripheral blood from ALS patients by repeated analysis during disease progression will give us valuable insight into immune system function over time. We examine blood from ALS patients and healthy volunteers (controls) three times over a period of one year for hematopoietic and immune system markers. Cord blood cells will also be co-cultured with patient blood to determine the potential for regulating patient immune response. Correlating the acquired data could lead to a future of individually tailored cell therapies for ALS patients.
Thus, cord blood could be a potential candidate for cell therapies with the goal of system repair through regulation of immune responses in ALS. Our results may provide the basis for a novel, effective, non-invasive therapy for ALS."
Also, I have attached a memo from Saneron, which should include contact information for Theresa. Her office number is 813-974-5909.
Thank you for your help. My heart is with you. Take care,
MEMO TO ALS COMMUNITY
April 21, 2006
YOU CAN HELP!
We are looking for individuals with and without ALS for an umbilical cord blood research study here at the University of South Florida in cooperation with Saneron. This research study is a preclinical study needed to develop a treatment protocol for Saneron’s U-CORD-CELL™ therapy, a proprietary umbilical cord blood stem cell suspension, which has shown promise in previous studies by our group in an animal model of ALS. Individuals with ALS who have not already participated in this research study are greatly needed.
We are also asking you to reach out to others who do not have ALS to participate as controls for this study. The control individuals must have no family history of ALS. Control subjects are very important because they help us know what findings in ALS patients are related specifically to ALS. Controls can be from many groups including friends, spouses, neighbors, and co-workers.
Participation for individuals with or without ALS requires the completion of a research consent form and the collection of three blood samples over the course of a year along with questionnaires at the time of collection. All information is coded and remains confidential. There are no costs to participate in this study.
The Florida Chapter of ALSA has graciously offered to partner in this research by helping us get this announcement out. You may contact us directly at the number of emails listed below, so that we may further explain the study and arrange a convenient time for your participation. We cannot overstate how much we appreciate your help in this part of the fight against ALS. Your participation makes an enormous difference to us, ALSA, and anyone with ALS.
Thank you for your support.
Nicole Kuzmin-Nichols, M.B.A.
Svitlana Garbuzova-Davis, Ph.D., D.Sc., Primary Investigator (firstname.lastname@example.org)
Theresa A. Zesiewicz, M.D., Department of Neurology at USF (email@example.com)
Ashley McEntarffer, Research Assistant (firstname.lastname@example.org)
Tuesday, February 6, 2007 11:55 AM CST
ALBANY HERE I COME, APT ON THE MARKET, AND BRRRRRRRR
It has been so long since I updated….
Well Albany is edging closer and closer. I really really need that laptop but I am holding out for the new MAC leopard edition. I will be leaving home probably around 11 on Sunday to get to Penn Station in time to board Amtrak to Albany; returning on Sunday evening probably in the door at 7:30 or 8pm. Everything else is set by ALSA and I can hardly wait. Full report of course when I return.
Very vivid dreams lately. Starring a cast of characters of people who are or have been, in my life. Keith Hopwood of Herman’s Hermits keeps popping in. What does that mean. I mean, HH were my teenage idols but this is ridiculous! And last night I was having dinner with Yoko Ono, Paul McCartney, a bunch of high school friends and of course, Keith Hopwood of Herman’s Hermits. Every night I am in a different place and having a different meal with all kinds of people. One night it was Coney Island, one night it was
Battery Park City, and last night it was Jackson Heights with a little Roosevelt Field shopping mall and we took the Roosevelt Island tram to get there!
Okay the apartment is on the market. I met with Tim from Corcoran yesterday, thanks to Jeanellen, who was there too. I hope the profit will be nice enough to pre-pay rent on a nice place for a year, maybe two. We shall see.
Which brings me to the weather. Unless I hold an open-house for polar bears, there isn’t any sane person who will come to look at this, or any, apartment!
CD-PAP is around the corner-that’s consumer-directed care, where I get to schedule my own team of aides! The doc was here to evaluate me and I received the approval from NYC HR. Some things take a long time to get going but, when they finally do, they move!!!!
Thursday, January 25, 2007 3:52 PM CST
ADVOCACY AND ONE INDUSTRIOUS BUNNY RABBIT
I am now closer to going to Albany and DC, and I have to ask everybody to become an
ALSA advocate. This can involve as little or as much as you want to give. Maybe you want to receive regular updates on ALS research (which in most cases can also benefit such diseases as Alzheimer’s, Parkinson’s Disease, Diabetes and maybe a host of others), write to lawmakers in Washington DC, your state capital, or locally by letter or e-mail about their endorsement of the latest initiative, or even go to annual Advocacy days in Albany or DC. We need you to go to the following website to register:
On Sunday I had a visit from Andrea Bryant, whose ex-husband and best friend Rich passed away from ALS in August of 2006. Together we watched the movie “Jenifer” about Jenifer Estess, who also passed away from ALS on December 16, 2003. Coincidentally, that date is also significant for me. On that very day, I went to New York Hospital/Queens to have an MRI – my first test in the quest to find out my diagnosis. It was the first formals step to find out what caused the symptoms that had begun almost a year before and really intensified that past summer and fall.
What is notable about Jenifer, is that she and her two sisters Meredith and Valerie, founded Project ALS http://www.projectals.org which even after Jenifer’s death, still raise funds for ALS research. Meredith was a theater producer and had a lot of show business contacts, so Project ALS threw big splashy celebrity benefits. I don’t have that kind of clout, but I am asking all who know me and read this blog to help me in this fight. We are really on the edge of a breakthrough, especially since the new discovery that amniotic fluid may have the same regenerative properties as stem cells. There is also an effort on the part of the Veteran’s Administration, due to the ALS-like symptoms shown in veterans of the Persian Gulf War. And we are pushing for an act in Congress pertaining to a national ALS registry. I and many other PALS (Persons with ALS) are registered through a website called Patients Like Me (http://www.patientslikeme.com). There already seem to be other patterns, aside from the Gulf War veterans and the high incidence in Guam and the Kii Peninsula in Japan. They actually think the Guam cluster is from a ceremonial tradition of eating bat meat (yes, bat meat). There are also clusters in Missouri, a military base in Texas, and Northport, Long Island (a group of teachers). As a matter of fact, there are a disproportionate number of teachers who have ALS, which opens up all kinds of theories (eg. stress, exposure to virus, chemicals) A national registry would facilitate the identification of patterns and thus causes and, hopefully, cures or at least better treatments.
On the bunny front, Chelsea increasingly endears herself to everyone who meets her. Last night, she sat in Lynette’s lap and then ran around for hours without leaving one stray fecal pellet (poop). In the not-so-endearing category, she managed to dislodge the adaptor going into the telephone jack, so the phone was out one morning, and we had to find out why. And, despite meticulous bunny-proofing by covering wires with tubing and hiding all exposed wires behind plastic, good ole Chelsea found a telephone cord sticking out and chewed it in two! A new telephone cord and a lot of effort later, my fax is back in business. But guess what? We found bits of tubing on the floor! She has managed to gnaw through the usually-reliable tubing. Okay, it’s like finding a significant other – YOU CAN’T HAVE EVERYTHING!!
Sunday, January 21, 2007 11:49 AM CST
Dignity – why do they think that a sick/disabled person is no longer entitled to it?
I am living in a 400 sq foot studio and I have managed to maximize my space. But now?
Everyone who comes in here feels, for some reason, that it isn’t my space anymore. I have adjusted to the fact that I am almost never alone. There is an aide here 24/7, except when they go to do the laundry or other errands. I don’t have anywhere to escape. The TV goes most of the day. At night I don’t have a choice; if I am to get any sleep, the light has to go off and the TV too. So the night aide catches a snooze in the chair. That’s fine, but having a day aide snoring in my chair during the day is annoying. God bless Ellita. She anticipates everything I need even before I need it, but I have another aide who has taken to sucking her teeth and rolling her eyes when I need her to do anything during her soaps.
And if that isn’t enough, I asked the nurse about my Albany trip and she gave me the third degree and said that it will have to be “approved”. I don’t care if I have to pay Ellita out of pocket. The nurse asked if my doctor knows I am going. Okay, so now I am a baby. I need to tell this nurse everywhere I go?
And I asked for a transfer board and transfer belt, to make it easier for the aides to transfer me – she insisted on ordering a Hoyer lift. This thing is huge. It is a large metal contraption that the aide straps me to, using a special vest, then hoists me up and puts me down. It takes a year and a day to hook me up and then another year and a day to unhook me and get me out of the vest. It looks like I am getting ready to go hang-gliding, Now my apartment screams “HOSPITAL” No mistaking it now; I might as well have a sign outside “sick person inside”.
And if that isn’t enough, I told a social worker last week that I listed my apartment and will move to a one-bedroom apartment, and how I have no privacy and, the worst part is that I can’t even go into my kitchen to get a beverage or a snack and I don’t even know what’s in there anymore. The other night, it took me 30 minutes to explain to an aide what I needed and she kept insisting that I didn’t have what was in front of her in plain view on the top shelf of the refrigerator. To get me in the bathroom involves getting me out of the wheelchair, where I hang onto a grab bar and walk slowly into the bathroom to the toilet. When I am done, it’s too exhausting to turn me around to the sink to wash my hands. So we have to keep a supply of anti-bacterial wet-wipes in my living/bedroom for me to use when I have hung on to the grab bar to get out, and back in the wheelchair. Can I ever “make it in time”? Very rarely, and half the time, once the aide has gotten out of my big comfortable chair and done the routine of getting me into the bathroom, it is too late. So, given that I know I won’t get there in time anyway, I just pee in my depends. Very dignified.
So the long and short of it is: I need a one-bedroom apartment with a bathroom I can get my wheelchair, or at least a smaller transfer chair into. And a kitchen where I can wheel in and get something out of the fridge is very important too, In the meantime, a lot of you will write to me with the same suggestion the social worker had. Use my bedside commode and bring a small refrigerator into my living/bedroom (my LB). Very nice. Now I should go to the bathroom in front of my aide and any guests in the middle of the this 400 square-foot apartment, and while I am sitting on this commode, (making sure the blinds are drawn so the neighbors across the courtyard and any workmen on the roof don’t get a free show), just think that my little refrigerator is in the same room, which is where I eat my meals too. So much for privacy. But now I have the luxury of being able to reach for a snack while going. And if the aide doesn’t get up from her chair to clean the commode right away? Well, this is not a pretty picture, and gives new meaning to “don’t go to the toilet where you eat [and sleep, watch TV, receive guests, read, etc.]
ALS has taken away enough of my dignity already; I am going to keep what little I have remaining.
Tuesday, January 16, 2007 7:59 PM CST
I got an article published in Associated Content about how to
use your knowledge of English to learn a foreign language
here is the link
it's not much but it's a start...
Chelsea is a dream-bunny. Tonight and last night we let her run all over the apartment and she didn't leave one poop on the floor! Everything goes in the box. And she goes up the ramp and in her cage on her own!!!!
I am closer to my trip to Albany. I am going to ask the nurse if she will clear Ellita to go with me and even be "on the clock"
The building installed the automatic door in the side entrance. 21 months of waiting with the NYC Commission on Human Rights nagging the building finally paid off. I wish the NYC Dept of Education was as supportive.
My Consumer Directed Care application finally left the VNS office and went to NYC Human Resources Administration but it seems to be in limbo over there somewhere
Saturday, January 13, 2007 11:19 PM CST
So much is happening and so much needs to be done that I hardly know where to begin. So let me begin with my new foster baby. Chelsea is a gray upright-ear bunny who has been at Manhattan CACC – Center for Animal Care and Control. Otherwise known as the city shelter or “the pound”, Manhattan CACC is on 110th Street and the poor bunnies there, and in every city shelter, are living among cats and barking dogs and even sometimes with chickens, goats, ducks, and other noisy beasts. Thanks to the people at Rabbit Rescue and Rehab, which is the NYC Chapter of the House Rabbit Society and also its offshoot Long Island Rabbit Rescue, the rabbits at CACC in three boroughs are now getting wonderful care, and being spayed and neutered.
Furthermore, some of the shelter bunnies are taken every Saturday to Petco in Union Square to meet potential adopters, thanks to Cindy Stutts, my dear friend Maddy deLeon, and other dedicated volunteers. They also get spayed and neutered. Chelsea is one of those bunnies. She has been almost adopted at Petco twice, and is sure to be snatched up soon. But, in the meantime, she is away from the barking dogs and other chaos and lives in a spacious puppy crate at my apartment. She has an uncanny resemblance to my Penny bunny who passed away on May 24, 2005. I am really loving her and she is a regular love-bug. She is very good with her litter box and loves to be stroked and petted! I am officially a bunny foster mom, and and enjoying every minute!! And, most of all, I am making a difference in some-bunny’s life. Maryann reports to me, by the way that my Hannah and her new hus-bun Stevie Wonder can’t keep their paws off each other and are busy grooming each other all day and into the night.
Anyway, I now have a doula – that is a volunteer who will come weekly to give me support. I will have more on that later. But her name is Diana and she is finishing up her studies in Eastern medicine and will try out some of her acupressure magic on me. It is all about the relationship of body and mind for me now. A positive attitude and purpose to my life will keep me fighting
Which brings me to this last piece of news. ALSA has found some scholarship money for me to attend Advocacy Day in Albany in February and in DC in May. Room and transportation are taken care of. So all I have to spring for, is meals for the two of us, and private pay for Ellita, which I think I can raise. Diana will also be helping me with the book, which I can self-publish and sell. I even found a place that will put it on Amazon and Barnes and Noble online….. more to follow
Monday, January 1, 2007 9:33 PM CST
2007 is the year I am throwing out the old and welcoming the new. I once thought it was impossible to make any new beginnings in this condition, but I was wrong. When the world wants you to go away and be invisible, you have to go out there and be visible.
I signed up for a tea group a while ago, and kept blowing off the get-togethers, until the group leader read my journal and asked me to “please come”. New Years Eve with my bunny-rescue friends, was wonderful.
By the way, Christmas Day at Haley and Claude’s house was all I could ever have asked for. It was a great gathering of family and friends, with endless appetizers and desserts. On top of that, I received lots of candy from people, so I have to get off my rear end and get the ankle braces so that I can walk with the walker again and burn off some of those calories. I am wheezing and every sort of physical activity makes me short of breath, so it’s difficult.
Before Christmas, I met with a social worker from the Shira Ruskay Institute of the Jewish Board of Family Services. I expressed my need to continue with my art and writing, and they are trying to assign me a “doula” to come weekly and help me work on those goals. I have two essays in the works – one about the connection between Jews and Chinese food, and the other about how I just happened to be at JFK Airport on a field trip with my fifth grade class on the day the Beatles landed on February 7, 1964, and how the event impacted the lives of me and every other baby boomer. My aim is to submit these to magazines for publication, and to incorporate them in my book.
I find myself hoping for something that I never would have thought a couple of months ago. I want to fight this diseases and keep going. I have begun using the bi-pap during the day as much as possible. I am ready to say goodbye to people who don’t have the time for me and to embrace those who do. Warren Schiffer came yesterday and spent whole day upgrading my computer system. I am still thinking of some kind of fund-raiser to get funds for DC, Ride for Life, and a laptop. I am really embracing my ALS family of supporters. And I am preparing my apartment to welcome a bunny friend from the foster system.
I will provide a home for a bunny waiting to be adopted into a forever home. Hannah is married officially to an elderly black blind bunny named Ole Man Stevie Wonder. I am proud that I took her from a sad situation to a loving home and to a pairing. Her rear end is clean because Stevie has given her a new lease on life and some new energy. The wonderful thing about a bunny from the foster system is that the rescue takes care of all veterinary care. I supply the greens, the hay and the love. I want 2007 to be the year I make a difference and the year I give back.
Saturday, December 23, 2006 3:51 PM CST
As my condition worsens and gets less “pretty”, less people out there are present in person. People I have only met online have sent me some wonderful gifts. And Marjorie Feinman, a high school friend who reconnected to me through classmates.com, sent me an awesome gift of a video i-Pod. This will make life more fun, as will all the chocolates and other objects of thoughtfulness from people whom I have never met.
My circle of friends that I have met through the ALS community widens and becomes comfortable for me. If I say I have to go on the bi-pap during the day, they know just what I mean; I could even, if necessary, go on the bi-pap right in front of them
At my last clinic appointment, I asked my doctor to be honest with me and tell me how much time I can expect to have remaining. He said, of course, that it was difficult to say, but perhaps a year or so, if no serious bout of pneumonia knocks me down. Right now, at my very low breathing capacity, and normal downward progression, this would be true. However, with extra time on my bi-pap (non-invasive vent), and keeping myself and my immune system strong, it could be 18 months, or maybe even two years. A month or so ago, I was willing to just let nature run its course. I didn't see any reason to keep fighting. Now I realize there is still so much I want to do.
I met with Sandy April at the Shira Ruskay Institute, and she said they will assign me a “doula” who will visit me and help me achieve some of my creative goals, not the least of which is my book.
If you go to stemcellaction.org and click on “portraits of hope”, and search for my name, you will find my bio. If you believe in stem cell therapy, and want to see stem cell research and therapy happen in the United States, then join this site, and you will get regular updates on the progress of stem cell research, and what you can do to help
And in May, I am going (I am determined this time) to DC to the annual ALS Awareness Day. I don't know how I am going to do this financially, but I am going to place my old books and other items on eBay to pay for Amtrak, hotel, and an aide to go with me. Ditto for this year's Ride For Life. Now, the Ride hopefully won't cost money for room and meals, but I either need to pay an aide to go with me, or a friend to accompany me for some or all of the days and nights, and assist me with getting ready in the morning and at bedtime. Or, if I can raise the money, I need to pay an aide to go with me.
So, my work is not done. I have a lot to look forward to, and a reason to conserve my energy and immune system.
Monday, December 18, 2006 1:10 PM CST
Even though it isn't the new year yet, here is my resolution: I, Fern Cohen, do hereby resolve to dwell on what I DO have, rather than what I DON'T have or have lost. Although choosing not to DWELL on my losses, I will not ignore them; I will mourn my losses appropriately, and then move on.
So having said that, my work is not done. I have gone back to waking up and showering early. I am taking a free course on-line in HTML, and I have begun to create my own website - ferncohen.com. I have also initiated a new yahoo list community called ALS-NYCMETRO, for patients, caregivers, friends, family, and anyone involved in the ALS community in the five boroughs, Long Island, Northern New Jersey, Westchester, and other areas surrounding New York City. I am in the process of completing my first essay to submit to magazines. And I am serious about a book, and Jeanellen said she will assist.
On the unfortunate-but-true front, I attended the building Christmas party last night. I got some hellos from the other side of the room, but was basically ignored, even by neighbors I used to call friends. Some disparaging remarks about the change of party venue due to “accessibility”, coming out the sides of mouths, accompanied by nods in my direction, and well within my earshot, infuriated Ellita. She said she held her tongue because she doesn't live here, but she told me she was hurting for me. Later on, when we came back upstairs to the apartment, she said that many of those same people stop her in the building lobby, in front of the garden, or at the mailboxes and inquire about me. “How is she?” they ask her, not mentioning my name. She tells them that Fern is fine, thank you, and they can knock on the door of A-11 and say hi to me. They never do, of course. Ellita told me that when she saw some of them last night, they nodded hello to her, but avoided me. “I thought they just didn't want to knock on your door and intrude, but I figured they would use the party as an opportunity to break the ice”, she said in utter horror. In fact, it was Ellita who said at 6:00 pm, “Come. Let's go downstairs to the party.” Now she feels it was a hurtful mistake. I am actually at peace with it; I know how people are. By now I am used to nobody in the building talking to me, and I have accepted that, of 90 apartments, in a building I have lived in since September, 1984, and whose Board of Directors I served on for two years, nobody is ever going to knock on my door to bring me chicken soup or home-baked cookies.
I am accepting a lot of things, even though I don't like them. People have lives. They're busy. I accept that. I accept that I inspire fear of the unknown, a disease nobody wants to see, nor deal with. Being with me takes patience, waiting for me to type out my conversation, patience while I squeeze my wheelchair through store aisles, and in doorways, and while I look for the accessible restroom, sip my drinks through straws, and comb the menu for something I can drink or eat without it running down my face, making me choke, or making a special request to have it cut in tiny pieces. I attract attention with my wheelchair, my trusty speaking device or writing “chai tea latte” on my magic slate, to the barista at Starbuck's (I keep meaning to correct the pronunciation of “chai” on my machine) For the few that have the fortitude to put up with all this in the past year, I am extremely thankful. And for the ones who have either decided that I am too "high maintenance", too unpleasant to see, or be seen with or just haven't had the time ("I am thinking of you, I really, really am."), well it was nice having known you all, I really, really mean it. But I am going to be too busy to read your cute little jokes, cartoons, and otherwise well-meaning emails promising me that if I forward this to 15 people, I will meet my soulmate, have a long and prosperous life, or receive the cutest video on my screen. I have enjoyed getting them in the past, and have read and forwarded every one-- I really, really have.....
Monday, December 11, 2006 0:00 AM CST
I think about death, but not in the way of “how will it feel to die?” but rather “what do I want to do with the time I have left?"
There is almost some comfort in knowing that this will be, in all probability, the last holiday season I have to face alone, stress over gift-giving and tipping, and deal with the unfulfilled expectations this holiday always brings. This will most likely be the last New Year’s Eve that I will have to sit alone, wondering why I have no celebration to attend. Every day now, upon waking, I say to myself “Okay, here I am for one more day.” I am told that for someone with my respiration, it can be months, depending upon how religiously I use my cough assist, and how many daytime hours I use my non-invasive vent. Mechanical ventilation is not an option, since I don’t have the resources to live at home on a vent, and I really don’t want to go to a nursing home, even if there are vent spots available. People can’t handle seeing me now; on a vent they are going to be more disturbed.
I am taking an online course in HTML and creating my own website, and I have started one using a hosting service and their own webpage software. I am writing stories of my life, and Jeanellen will help me with that. If I have the time, I may put them into a book.
I do have goals – things I want to do and get done. Warren is going to help me upgrade my computer, and I have started a new yahoo group for NYC-metropolitan area PALS and CALS to share resources and local news regarding events in this area. I am helping to moderate two bunny lists too. And I finally sent my $99 check to the Mercury people to unlock the PC functions, so that can serve as a sort of laptop. But I still want a MAC laptop at some point, and I am saving to get an I-pod so that I can download podcaasts and even audiobooks,
I have accepted that certain people can’t handle seeing me, and I am moving on. I have little energy to expend on what or whom I have lost. I still cry a little each day about it, but I have had to accept it. I know that, when the end comes, I will have hospice care, and it will be comfortable. I have given up any romantic notion of anyone being there to hold my hand; I won’t need it then. I have found activities I can do alone, and even a monthly museum trip does so much to lift my spirits. Where am I in the five stages of grief? I hope acceptance, because the anger stage was way too exhausting.
Wednesday, December 6, 2006 9:57 AM CST
It has been really painful for me to write, or to do anything for any length of time at the computer. This was not due to emotional pain,but physical agony from a torn ligament in my shoulder area.
I can only guess how this happened, but I do know that the one aide who was not trained in how to transfer me out of my wheelchair, was doing it wrong. She would come to the right side of my chair and lift me up under my armpit. This was probably what began the whole thing, because I began to feel pain in my right shoulder blade, and tingling in the tips of the fingers of my right hand, last Monday. The pain became more and more intense until Thursday it was unbearable, and every movement of my right arm was making me yell.
When someone in my condition has an injury it makes every task harder. Now, every time I held onto a grab bar, my right arm killed me right up to my hand. So that made getting into the bathroom, and turning around in the bathroom while holding the grab bar, excruciatingly painful. Only now, as I write this on the following Wednesday, can I sit at the computer and type at the keyboard or use the mouse for more than a minute, before resting my hand. For the past three days, it has been feeling as if the ligament was tightening and pulling on the rest of the arm, making the elbow and the hand achy. I have been taking Tylenol with codeine to numb the pain.
On the up side, last Wednesday I and Ellita met Jeanellen, Stan and Phyllis at the Metropolitan. Access-a-Ride got us there late, but what else is new? The handicapped entrance is great and the museum is fabulous always. I highly recommend the photos of New Orleans in the “After the Flood” exhibit. BUT we spent a lot of time looking for the wheelchair-accessible bathroom which, by the way, is on the ground floor near the handicapped entrance. Despite one staff member's information (“there is a large stall in each bathroom”), the only restroom that fits a wheelchair and a caregiver is on the ground floor
Which led me to the creation of the yahoo group “ALS-NYCMETRO” where we can share resources like the above. And from that, I am creating a database of information specifically for patients and caregivers in the local area. If you didn't get my invitation to join, please email me and I will give you the link.
I have to upgrade my MacOSX to Tiger. I have to see if it is worth it to hire the Geek Squad, or just to buy a new laptop. Of course my Mercury assistive communication device is a fully-functioning computer, but it is windows, and I find it hard to give up my mac. I am having a problem with my bi-pap vent; it is making loud pops and I have to get tubing replaced. I called Millennium totally by relay call (thank you Catherine for turning me on to sprint relay, and I found another relay service through AT & T). Relay calling through Sprint is great!!! I also purchased a new chair at Macy's that has a foot-up position - no back recline because it is a wall-saver, but a nice price and comfy.
Saturday, November 25, 2006 6:14 PM CST
Thanksgiving was wonderful. I spent it at Haley and Claude's house, with Haley, Claude, Dad, Tyler, Rianna, Jenna, Claude's mom Nina, Claude's sister Laura, and Nina's caregiver Phillippa (sp).. oh, and of course Papi-poo Ginger, who gave me the first pet-licks since Hannah. Jenna spent a lot of time writing “I love you” on my mini-slate and my Mercury machine. Since she wasn't at the Walk to D'Feet in September, this was the first time I saw her since her birthday party on June 25, so it was nice spending time with her, and everyone else of course. The only bad thing was the non-stop rain, which made Claude's four-way trip difficult and my transfer between car and apartment/house sloppier than ever.
The months fly by and it is hard to figure out where the time has gone. It has been months since I have seen certain people, and I become so self-conscious of the shock my progression will cause people who haven't seen me in a while, and the extra considerations I might need in the way of assistance.
There are things I confront now, that I never did before when I visited people. Like, after a few hours in the manual chair, I need a comfortable place to put up my legs and lean my head. How would anyone know that, without being around me on a daily or weekly basis? And asking for a bathroom trip is overwhelming, and how do I expect them to transfer me and help me? Without going on my bi-pap for several hours, and being away from my cough assist, I start to cough because the secretions build up in my throat. This happened in the car on the way back, and thankfully, I managed to cough some stuff up. I always promised myself that a life without friends and family and some sort of socializing, is a life with no quality. Since it has been so difficult for others to come see me (notwithstanding the new spacious furniture arrangement, there aren't enough chairs for guests to sit on -- La-Z-Boy come rescue me) I want to accept others' invitations to go see them. The time that I cannot get out to go, is the time that this life has no meaning.
How to make it work? I guess I have to ask for someone to transfer me to a couch or comfortable chair for a while? I found myself cutting down on fluid on Thanksgiving because I knew that there was no easy way for me to go to the toilet, and in the manual wheelchair, no way to move myself. Manual wheelchairs are not good for people who don't like to ask for assistance.
I am thankful for the use of my hands and arms. I can still hold onto grab-bars and type out messages, and so I can still communicate. I have no intention of enclosing myself inside of a bubble, even if it means that I am risking my health by going out and exerting myself. It is all about “quality of life” for me now. There is nobody else I am living for. I am looking forward to my MDA support group this week and then to the Metropolitan Museum on Wednesday with Jeanellen, Stan, and Phyllis.
Saturday, November 18, 2006 1:25 PM CST
I am sitting here thinking of all I have to do in the way of
paperwork, and getting used to the idea that weekends are
no longer times when I socialize. I can't get into reading, but I have to. My breathing is pretty bad, but I hate the bipap, even though the nasal mask lets me watch TV. Slowly I am reluctantly accepting that it is mostly myself and an aide.
I slept very little last night.
I have a prescription for an orthotic for my turning ankle. I am exploring where I go next; my dream is to live in Manhattan so I can go out and see things -- a museum for a few hours, a park, even to hook up with some other patients who live there. I don't know if this will happen, but I am checking out leads. I want to make some dream come through. I am still checking out care facilities, but places where I can feel I am part of something.
I have abandoned all hope of leaving a legacy, finishing up some of my art begun a few years ago, scrapbooking,family tree, all the things I wanted to do, and I have especially let go of plans I had to do any projects with anyone else; people mean well, but they can't come through after taking care of their own lives. It is just a reality. I will do what I can still do on my own. I am thankful I still have use of my arms and my hands, as long as it doesn't involve fine motor functions. I wish I knew of an art class I could take.
I have my Beth Israel support group this Tuesday and I am looking forward to Thanksgiving at the family -- cranberry sauce, stuffing, mashed potatoes, all things I can still eat.
Tuesday, November 14, 2006 2:09 PM CST
Yesterday was my quarterly visit to the ALS clinic at Beth Israel. First I met with the neurologist, Dr. Scelsa. We discussed my request for a DNR and he feels that I am still strong enough that I could rebound from a mucus plug, or pneumonia. But the breathing is deteriorating a lot faster than my limbs, which are losing no strength, but are getting stiffer. Bulbar involvement such as mine, shortens life expectancy considerably. Since a tracheotomy and mechanical ventilation are not an option for me, a bad bout of respiratory infection could do me in. Although I feel that my quality of life stinks, I am still somewhat mobile, and he thinks I still may want to fight back if I have a setback. If I am hospitalized, he will give an honest assessment of whether or not he thinks I can recover. Although I am still within that 2-5 years of life expectancy, my time is precious, and I will not be one of those limb-onset patients who are still around after 8-10 years, some with no use of their limbs, many of them still talking and eating.
In my meeting with the OT and PT, I talked about my ankle-turning. I got a scrip for a brace, and that should help. The RT is going to order me an Ambu-bag for my coughing fits or shortness of breath when I am out and about, and not near my bi-pap. She feels I should increase my bi-pap use, and of course continue using my cough machine.
I talked to the RD about my food intake. Since I only lost 4 pounds since my last visit, I am going to keep doing what I have been doing. I met with the Social Worker and discussed ways that I could find some fulfillment, to my days and we are exploring solutions to the isolation this disease brings.
G-d willing, my next clinic visit is February 12, 2007. And if G-d is really good to me, I am also planning to attend ALS Advocacy in Washington DC May 14-16, 2007.
Wednesday, November 8, 2006 8:06 PM CST
Sunday morning, I had a visit from Bina Wagner, another
PALS (Person with ALS) who lives in Forest Hills. In Sept.
of '05, when I was so afraid of going through my feeding
tube surgery all alone, she sent Beth Israel's Jewish
Chaplain to come see me in the recovery room. She and I
caught up on things, and how it is to live with ALS.
In the afternoon, Louise came over to help me with bills,
another part of the CD-PAP (Consumer-Directed Patient Assistant Program) and to look at the footrest of the wheelchair that won't stay up anymore.
My biggest mistake in this whole process was going to Helen Hayes to get the wheelchair. There is no way I can get there for minor repairs. Everyone who got their chairs through Rusk has the support at NYU. The clinic should really not be sending anyone to Rusk unless they have a wheelchair van. Now I have to find a wheelchair repair that I can reach by Access-a-Ride. Rusk allows anybody who got the chair there, to go back there for stuff like this, but how would I get to Rockland County? And the last time Rehabco came to take the chair for repair, I waited over a week to get it back. There has to be a better way but I just don't know what it is.
Monday, they came to take away the broken lift chair. Now I have too much space in the apartment. In the afternoon I saw Dr. Livingston and we talked about my fears for the future. I also woke up with a cold-- inevitable I guess at this time of year.
Tuesday, Eileen Mullarkey from the NY ALSA and Beth Israel clinic, paid a visit. She gave me a report of the Jewish Hospice in Riverdale; she sees why the location might not be good for me and told me that Continuum will be opening a hospice residence in Manhattan. She totally sees now why this apartment is no good for me and never will be. The bathroom is just too miniscule and it is too depressing that I can't get into my own kitchen to get a snack for myself. I have to move, and there really are no "accessible" apartments I can move into. A care facility is my best option. I am going to arrange a tour of the VNS hospice home and Ozanam Hall soon.
Saturday, November 4, 2006 6:49 PM CST
okay.my prayers were answered. The doorbell rang about 11:30 and it was Dad and Tyler. What a wonderful surprise!
Tyler takes after his aunt -- he likes to watch BBC-America! He is a lover of those British accents. The most wonderful thing? When they were about to leave, I said to my Dad "I wish you could leave Tyler here", and Tyler said "I wish I could stay too, Aunt Fern". No sweeter comment could have touched my ears. My Tyler still loves me. I told him "You would enjoy England". I told him a little about my travels, and when I lived on Abbey Road in 1976. I would love to be able to take him there.
My stomach is not the best lately. I just threw up and poor Gulshan had a big cleanup. I have a pounding headache from yesterday's crying. I find it hard to get comfortable. Dad brought up the subject of moving to his house. He is going to check out the situation at Bishop Kellenberg Gardens, a disabled housing complex in Rockville Centre. I was also directed to Ozaman Hall in Bayside by Norma; her mom was there, and her father-in-law is there now.
I need to be in a place where there are other people. Eileen toured the Jewish Hospice in Riverdale -- I am keeping an open mind.
I think I have written that am kind of tired of fighting this. I want quality of life, or no life at all. When my time is up, I want to go with dignity.
Friday, November 3, 2006 7:35 PM CST
How scary this can get......
I scare myself and am sure I scare others
Seriously, it is hard to keep fighting fighting fighting
Fighting for what? The cure?
I fight every day for a day without crying, a day where I can laugh with a friend. a family member, an aide.
A day where I can even help somebody, or make someone else laugh.
But most of all, a day where I can give up trying to control things and let the love come, if it will.
The crying that just comes on me is frightening..I can't stop it, and the sound is terrifying.
I wish for a good night's sleep and a day without pain.
And most of all, for someone to take the time out of a busy day to spend some time with me
Friday, November 3, 2006 1:18 PM CST
I don't know what else to do but post here. I know that you
are out there reading this. I can't stop crying and I can't "pull it together" Please everyone pray for me that I can find a little serenity, that I can stop crying long enough to find a reason to go on.
Everyone who is so busy, please find some time to let me know
I am still here for a purpose. I miss my Hannah nudging my feet to say "I am here, mommy, pet me" Yesterday Maddy came over with her little bunny, Oscar -- so cute, so friendly. She offered to let me "borrow" him, but I am afraid i won't want to give him back.
The other night Debbie sent me one of those "people come into your life for a reason, a season, or a lifetime..." emails. I have been hetting a lot of those lately before people "go away".. are they trying to tell me they were only here for a reason, or a season? I need you all, even if it is just for a saturday night to watch a DVD with me. You don't have to do anything for me of a personal nature -- my aides do that.
Maybe it is hard for you to be with me, I know it isn't easy. But if you can have some patience for the speaking machine, it isn't so bad. I am reaching out -- crying out.
Thursday, November 2, 2006 9:26 PM CST
Sunday, I went with Jane to PS1 Museum of Contemporary Art, which is a branch of MOMA. It's one of those things I have been meaning to do forever, and finally did. The art is very “out there”, but the space is totally amazing! I wish I had gone there over the summer because they have a great rooftop. The café has homemade sorbet in the greatest flavors, and their modern take on grilled cheese is delicious. I had mozzarella with pesto and tomato.
Sunday and Monday Ellita was out - long story not worth telling. And instead of calling Beverly, who lost her Sunday and Monday cases, they deferred to their “on-call rotation” and I got a different “sleeping beauty” each day. VNS/Partners in Care once again shows that the comfort and happiness of the patient is not their first priority.
On Monday I had one of my uncontrollable crying episodes. I couldn't stop it. Just when it seemed to let up, it would come again and again. And there was “sleeping beauty” in the chair saying “oh, stop crying….”
I got a wonderful surprise from Sherrie Newman, my friend from California. She went to a Starbuck's book discussion of Mitch Albom's new book “For One More Day”. She spoke to a rep from Starbuck's about me, and now I have an autographed copy! Mitch Albom is the author of Tuesdays With Morrie, about his college professor who had ALS. Another package: more See's candy from Carmen.
I miss Hannah, but I don't miss the peeing in my bed. I do miss the little whiskers tickling my face in the morning, and the furry body sprawled out on the rug, watching TV and entertaining me with her antics. I began thinking a lot this week about Penny. my first bunny who died much too young. I really owe so much to that relationship - it opened me up to the whole world of bunnies. Today, Maddy visited with Oscar, her little dwarf bunny. It was so great to have a little fur-baby hopping around my house again.
Sunday, October 29, 2006 8:52 PM CST
My right ankle continues to turn out, making it painful to take even a few steps. Try walking on the outside of your foot and you will see what I am going through. It also means that I can't shift my weight to the right foot in order to lift the left foot. I am praying that, at my clinic appointment on November 13, the doc will give me a prescription for a brace to keep the foot stable. My home PT, Steven, says that a brace (otherwise known as AFO--- assistive foot orthotic) should help me enormously.
In the ongoing effort to make my bed more comfortable, Warren brought me an “egg crate” mattress topper. It looked like the answer; unfortunately, I woke up with agonizing back pain - too soft I guess. Adding to my hell is the recliner that won't work. Home Medical is coming Monday to look at it, and to fix my broken bedrails.
On the upside -- a new furniture arrangement, with the help of Beverly and Louise, has made a great improvement in space. But there is a hole in the room, and a hole in my heart. Hannah's condition was getting worse. Her arthritis made it impossible for her to eat her cecals from her butt, as bunnies are supposed to do, and she was requiring butt baths every 2-3 days. Nancy Schreiber took her home and to Catnip and Carrots. Hannah also had a blocked tear duct, which Dr. Saver successfully flushed. But she needs to have ointment applied to the eye daily. So my Hannah is living in Great Neck, in a family room where she has company every evening, and a 50-inch plasma TV. Her new mommy is Nancy Schreiber, a rescuer. So I know she is in the best hands. Soon she will forget me; but I will never forget my baby. I will always love Hannah and I know I gave her a wonderful 15 months, and she gave me wonderful companionship.
I dread winter, and the cold. Donna and Gino and family sent me a wonderful jar of chicken matzoh ball soup, Lawry bought me a little Rosenthal china bunny, and Carmen sent another box of See's candies. I am trying to ignore the upcoming holidays; it is never an easy time for me, and holidays are especially depressing for me lately.
For the first time, I am finding it hard to be comfortable; my legs stiffen and I am fighting pains in the back and/or neck. I am working on managing coughing and bringing up secretions so I don't get pneumonia. Without my little Hannah, I am missing a little furbaby to cuddle up with.
I went a couple of weeks ago with Jeanellen and Maddy to see “So Much So Fast”, the story of Stephen Heywood, a man who is still living with ALS, whose brother Jamie founded ALSTDF (ALS Therapy Development Fund). Very similar to “Three Sisters”, about Jenifer Estess' sisters Meredith and Valerie, who founded “Project ALS”. Last Sunday, I went with Debbie Hirsch to my fourth Rabbit
Care conference at the Radisson in New Rochelle. Always a lot of fun!!!!
Friday, October 13, 2006 7:16 PM CDT
WINGS OVER WALL ST., THE WALK TO D'FEET, CELEBRITY JEOPARDY, AND RECLINER
In chronological order, let me start with the annual fund-raiser MDA's Wings Over Wall Street on September 28! I was honored with a complimentary ticket for me and two guests (Louise and Lynette). Founded by my good friend Warren Schiffer while his wife Toni Diamond was battling ALS, and now continuing in Toni's memory, this is a huge fundraiser! Guests, which include Wall Street traders, pay $300.00 a ticket for this event, which is held every September at the Marriott Marquis Hotel in Times Square. Additionally, raffle tickets are sold at $100 each-this year's prize was a Mazda sports car. The support of Michael Beier, a trader for Credit Suisse, and now the participation of his family in his memory, draws in the Wall Street spenders. And, there is a silent auction of valuable prizes, some with starting bids of $1500, include autographed sports items, exquisite jewelry, luxury vacations, and golf outings with such notables as Rudy Giuliani and Walter Cronkite. For more information, and if you are interested in attending in 2007, go to http://wingsoverwallstreet.org/
All money raised goes to ALS research-- to the teams of Dr. Hiroshi Mitsumoto at New York Presbyterian Hospital, Dr. Jeffrey Rothstein at Johns Hopkins, and Dr. Merit Cudkovicz at Massachusetts General.
Now for the Walk to D'Feet ALS at Eisenhower Park on Long Island. On behalf of my team, Fern's Fighters, a big thanks to all my walkers and/or supporters. The donations are still coming in. So if it slipped your mind, you can email me at email@example.com and I will give you my home address to send it to, so I can include it in my team's donation mailing. If you want to check out our team progress, go to http://web.alsa.org/site/TR?team_id=1200&pg=team&fr_id=1250
It is not certain if I will be able to put this together for next year. This year, I did all the coordinating and emailing to the team, including getting rides for a few people, and I don't know if I will have the strength in 2007. Besides the donations, a special “thank you” to Maddy DeLeon, who laid out over $400 to make tee-shirts for the team. I am going to find a way to reimburse her- EBay here I come; ready to list some books. As I said, my strength is diminishing. I have to limit myself to what I can do alone, because I have been a sucker for “well-meaning promises”. Thanks to Louise doing my monthly NYSARC transactions, Jeanellen doing a much-needed furniture rearrangement, and Maryann and Nancy transporting Hannah to and from the Catnip and Carrots bunny spa, I have been keeping afloat.
On October 7, courtesy of the ALS Association and Boston Red Sox Pitcher Curt Schilling, I got to attend (along with Haley and Beverly) the taping of two shows of Celebrity Jeopardy. The show with Curt will air on November 9, and you might see some audience shots of me and other ALS patients raising red ALS banners.
And, courtesy of a special program of the ALS Association, on Wednesday I received a phone call in the morning asking me if I wanted a donation of a brand-new upholstered
recliner. Of course I said yes, and I got something more comfortable for sleeping, than the hospital bed! However my new chair looks like a hand-me-down already. I paid the building porter a $10 tip to haul my awkward, clumsy-legged round table to the basemenr, and he must have rubbed it aggressively against one of the arms, because now that arm looks like it is from the 50s. Does anyone know where I can buy two of those covers that slips over the arms? I can't even have the pleasure of enjoying a brand-new piece of furniture!
Coming up: the Metropolitan Museum of Art with Jeanellen possibly next week, and a winter of trying to keep myself occupied. My social worker is looking at a hospice residence she says sounds very nice. The problem is that it is in Riverdale. .Almost nobody wants to come to Queens to see me, but at least I have some people in the neighborhood who help me out. Move me to the Bronx, and I will never see anybody ever again, but octogenarians. I know I have to get out of my tiny studio in Babushka-land, but not to a place in the middle of nowhere, where I know nobody! And the worst part is that I would only be able to have an aide for four hours daily. What happens when it is bedtime? EVEN if someone got me in and out of bed, what do I do if I have to get out during the night? And, if it is difficult to come to Queens, who is gong to trek to the Bronx. I will be stuck alone with octogenarians. NOT YET.
But I can see time getting shorter. I am starting to use my bi-pap during the day; the breathing is getting worse and worse. I am beginning to doubt strongly that I will see my 52nd birthday. It is getting increasingly longer to get me ready to go out. The trip to and from the shower in the morning exhausts me. I don't know how much fight is left in me
Monday, October 2, 2006 7:17 PM CDT
there is so much going on that I don't know where to begin, so let me start with a scary experience i had a week ago saturday night.
i had a fill-in aide who came in, declared that she was tired, and proceeded to go in the kitchen for hours on her cell phone. Then She came in and fell asleep. When it was bedtime, she was grossly mishandling me and hurting me, trying to "throw" me in bed over a raised bedrail. If I had let her do that, she could have broken my spine. I began screaming and she just ignored me, pinned my arms down, and finally figured out to lower the bedrail, still throwing me down on the bed. i just learned that the doorman heard my screams, but told Ellita that he didn't want to "interfere", and also figured that he had seen the aide come in earlier, so everything must be okay. He said the screaming eventually stopped, so he figured everything must be okay.(I could have been dead). What is even more unsettling is that if the doorman heard me, my neighbors on this side of the hall had to have heard me! They can't all have been out, even at 11 on a Saturday night. I have bruises on my arm that i am sure are from that. She then slept in the chair all night, never getting up to check on me. What kind of building am living in? what kind of neighbors do i have?
My word to everyone is this: don’t assume that the presence of an aide makes everything okay. I am blessed to have three regulars who are extremely sensible, and one who is weird and annoying, but not evil. Aides are not nurses; they are women who make anywhere from $6.00 to $8.00 an hour (mine earn $7.50) with a minimal amount of training, and almost no screening process. If your loved one is on home care, check in frequently; don’t assume everything is okay. There are wonderful caring aides and there are nightmares.
In the next few days, my entry will be more upbeat: accounts of Wings Over Wall Street and the Walk to D’Feet ALS…….
Thursday, September 21, 2006 7:26 PM CDT
It is getting harder to type for reasons of furniture layout. I have mouse and keyboard on one of those tablemates, which goes right under the wheelchair. But the wheelchair arms are in the way, so I tend to type with one hand. It is just a matter of someone helping to move the table so the top is slanted, and then moving the desk against the wall, so that I can relocate Hannah. Then I can get the wheelchair up to the printer/scanner and fax. Problem is that I have been going TO everyone, and no one has been here, that can do this for me.
Summer is officially over. Sadly, the closest I got to the beach this summer was a ride to the Long Beach boardwalk and dinner outside at Jordan's. That was a nice outing, but the summer just flew by. Promises of people to invite me over for barbecues, take me to Central Park, or days in Manhattan just never materialized. This put me into a big funk, I guess I was looking forward to a very social and active summer. Now winter is coming, and soon I won't get to go out at all. Unfortunately, I don't have the luxury of saying “maybe next summer…” Serves me right, I guess, for believing what people tell me.
I had a whirlwind weekend. First, I attended Debbie Hirsch's bridal shower on Saturday and the wedding on Sunday. Since these were both on Long Island, I did the acesss-a-ride/Nassau Able-Ride connection. But, this time, I did it through Long Island Jewish Hospital. Much better idea than connecting at Green Acres Mall, to be left in the back of Sears, possibly outside of mall hours, by a deserted parking lot. The building at LIJ is open 24/7, and has a gift shop and an “Au Bon Pain”. The Au Bon Pain is open pretty late too. But, you are inside, away from the elements, and safe and secure!
On the homecare front, more setbacks. My aide Gulshan, who works on Saturday, Sunday, Monday, and Tuesday nights, decided she doesn't want to work on Saturdays anymore. So now, I will have a fifth aide, who will work only on Saturday night, yet another stranger who doesn't know me, and knows nothing about ALS. The agency that my aides come from, which is a division of VNS, has issued a new set of “rules”, with more things the aides are not supposed to do. I was cheerfully informed by one of my aides, when I asked her to do something she normally does, that “we are not supposed to do that“. And then she told me about those rules. Lately I have just been throwing up my hands, like “whatever….” I am too tired to fight and protest anymore. I am just too tired, period.
Saturday, September 9, 2006 6:35 PM CDT
Where do I start?
My right ankle began turning itself in last week and if I am lucky if I can walk a few steps with the walker before it starts turning in again. It happened Sunday night while gulshan was here and she left me standing on it until it sprained and swelled up. She kept saying “oh, I don't know what to do” , while begging me not to fall, as if I could control it.
Then on Monday I had my appointment with Dr. Livingston. Within two hours, Ellita had me up and out of bed, medicated with breakfast, showered, and dressed. But when I got to Dr.L, I was so exhausted and my legs were so spastic, that the session became painful to get through and at one point my legs were fully extended, which made my back hurt something awful, and I could not bend them back. Finally, Ellita, whom we told to go out and get herself something to eat, returned, massaged my legs, and managed to bend them. We exited the building into pouring rain and stood under the overhang and my 3:11 access a ride came at 3:30. Not bad, except we made two pick-ups in Manhattan and one in queens. Those pick-ups and the rain on the LIE made us arrive home at 5:45. Two hours and fifteen minutes on one of the bumpiest van rides you ever saw. Every time we hit a bump, my wheelchair bounced, and sent a shock through my already-aching back.
By Tuesday the pain in my back was worse, and my ankle was still turning and achy. I had asked Nurse Raisa to send a physical therapist and she said that she had been trying to get in touch with my doctor but we figured the Labor Day holiday was slowing things down.
On Tuesday night, an effort to walk and bend my legs, was fruitless, made all the worse by Gulshan's cries of “I don't know what to do” and at one point, she told me to relax, and sat down. I was facing the bathroom crying, and she was sitting in back of me in my green club chair, looking toward the window. When I yelled at her to come in front of me and not to my back, she kept telling me to calm down and not to hurry things, and she went back to looking away from me. Finally. by some miracle, my legs bent, and I came out of my stiff-as-a-board position, and indicated that I was best off in bed. Somehow, at 11pm. We got me into bed, after three long hours of grappling.
I didn't feel at all safe with Gulshan anymore; the look of fear and dread in her eyes made me lose whatever confidence I had in her. The next morning, when Ellita came in, Gulshan told her “this case is getting too difficult. I am scared.” Well if she is scared, then how am I to trust her to keep me safe?
On Thursday and Friday, Beverly called sick. So now I had to deal with aides who don't know me or als. The aide Thursday didn't even get me to the bathroom to shower me. She didn't understand the first thing about transferring me. And she slept all day and left garbage and soda cans in the kitchen.
Wednesday night my legs were getting worse and i dialed debby's number. i thought at least let her take Hannah. She put in an emergency call to Dr. Scelsa; i was ready to call 911 to take me to the hospital. I was desperate! Dr. Scelsa increased my zanaflex from 6 mg daily to 8mg, so now I take 4mg at night. By the next morning, I was bending my knees on my own, although I was a little zonked.
Thursday I had to be rescued by Lawry and Lynette from the bathroom, where I tried to take a shower but ended up once again on my twisted ankle, this time wedged between the sink and the wall. It became obvious that my tiny bathroom will soon become useless to me. I have to move, but more on that later.
Friday was a little better, but I was so exhausted from writing down every little thing, and my ordeal the night before, not to mention totally in despair and fear of the future.
Today is Saturday and Beverly is here. We went out shopping and things are a bit better. But I have come to the dismal conclusion that I have to get out of this apartment. The dark exposure depresses me and I am alone with no neighbors regularly looking in on me. I have put modesty and even privacy on lower priority status. I have changes I have to make but how? My bathroom is so small I cannot get a wheelchair in there and certainly not a roll-in shower chair. So what happens to me? And if I do find a place to live, how do I move my stuff anyway? I am scared of nursing homes. I read tales of festering bedsores, neglect, and even abuse! Today I went outside for the first time since Tuesday. I envision a time soon totally housebound and even bed bound, but I dread being like that in this apartment, with no one around. For the first time in a long time, I am filled with dread!
Wednesday, August 30, 2006 9:29 AM CDT
Well let me start with the two brightest spots in the past week - a visit from my family and a great day in the company of Jeanellen Murphy.
Sunday afternoon I was visited by the Albertarios and my dad. They brought me goodies from my favorite store, Trader Joe's. They laid down a new area rug that has been sitting rolled up for months, took up and discarded the old disgusting filthy rug that was there, and swept and mopped the floor underneath, which was gross beyond description As usual, the kids entertained. The rainy day turned into an afternoon of laughter and a live show by Jenna. Rianna said she loves to clean! what a blessing for Haley! And my buddy Tyler -- what a love. Entering high school in September! Time flies! My vacuum that I purchased in the winter also finally got put together with the charger! Haley and Claude did a good job with that bunch! Thanks guys! I am on my way to the apartment re-arrangement.
Now onto Jeanellen! She is a wonderful person that I met at Chris Pendergast's house in Miller Place, at the post Ride for Life Barbecue on July 15. Jeanellen's mom, Mary Murphy, sadly passed away from ALS, but Jeanellen has remained active with the organization. Her mom had bulbar involvement as I do, and lost her speech, just as I have. And she was a school librarian, one of the multitude of PALS who worked in the school system. It is an interesting point: so many teachers stricken with ALS. I am hearing that one theory is that the students carry some sort of virus that doesn't affect them, but is communicable to adults, who may not have the immunity that the kids have. Anyway, back to Jeanellen. We had a lovely trip to Starbucks, and it is so nice to have another person in my life who has experience with this disease and its unique little idiosyncracies. I look forward to many such moments in the future with Jeanellen!
But now the dark spots: Hannah had to go to the hospital again. She came up on her ramp and fell off, and then was totally disoriented the rest of the morning. To the rescue, one of the bunny-people, Ellen Kane. Hannah went off to Dr. Jennifer Saver so they could administer steroids and sub-Q fluids. She is due to come home today, Wednesday with a puppy-pen. No more 24/7 free run for Hannah for her own safety! I am concerned for my little fur-baby.
In all this chaos with Hannah and the visit from family, which is always high-energy, came another home-care agency tragic-comedy. In short, they sent too many aides to substitiute for my sick regular aide, and made my night aide stay until noon. At one point, I had three aides in my apartment who all refused to leave because the agency screwed them. I had to threaten to get one thrown out if she didn't leave. I can't wait for Concepts to go through, so the aides can sort this out among themselves and I can decide once and for all who comes through my door and who doesn't. The paperwork is daunting and it takes a long time to write out the answers. That is my biggest obstacle these days - the slowing down of my writing and of course inability to make phone calls.
Another reminder: ONE MONTH TO THE WALK TO D;FEET!!!!
Sunday, August 20, 2006 8:27 AM CDT
So I had my clinic appointment and they still insist I am slow progression……I guess I don't feel that way.
My posture in the wheelchair was all wrong. After arguing back and forth with the wheelchair vendor, I learned that wheelchairs are subject to adjustment, especially the headrests and footrests that get knocked around so much! Anyway, Antoinette Verdone from the ALS Association came to my house and adjusted my roho cushion and my headrest! And she said that the “roho” might just not be the best cushion for me right now. She is going to send me an alternative type of cushion to see if I sit in the seat better. And the adjustment she made in the cushion and the headrest made a world of difference. Thank you Antoinette and thank you ALS Association. For those of you that do the “Walk to D'Feet”, just one example of the kind of service your money supports. By the way, remember September 30 and the walk. If you are not registered yet for Fern's Fighters go to http://web.alsa.org/site/TR?team_id=1200&pg=team&fr_id=1250
I am going to start tube feedings again -at least once a day. The very act of eating is so exhausting for me that I will conserve that energy for when it is a special meal! Also, Dr. Scelsa gave me a new medication for the emotional lability. It is a compound of dextromethorphan (which is a cough suppressant) and quinidine, which is a medicine for irregular heartbeat. It is one of those drugs which is FDA-approved for another purpose. This is very common practice these days--taking a drug which has been approved for one purpose,and experimenting with it for another symptom or another disease. Anyway, this drug has proven effective for this “pseudo-bulbar” symptom.
This week I have been out every day and I have done some fun things: on Sunday, I went with Jane to Gantry Plaza Park on the water in Long Island City, which is great! They have really done a lot of development on that waterfront. I wish I could afford to live in one of those luxury high-rises with the best view of Manhattan! That night I went to Avellino's for dinner with my neighbor Lisa. On Tuesday night I went to the Beth Israel ALS Support group with Louise and Debbie Hirsch! That meeting is really growing! On Wednesday I went to the house of my friend and fellow-PALS Norma Steck. Ellita and I relaxed with Norma and her caregiver Meg on her deck and then ordered in Chinese food! On Thursday night, I went with Jane to Pizzeria Uno for dinner. I struggled with a flat bread pizza and took half of it home for dinner the following night.
Now Friday was extra-special! My bunny-rescue friend, Stacey Wogalter, came in by 2 hour car-to-train ride from Orange County upstate to Grand Central Station and we took a bus to Soho to "Rice to Riches". Check it out! http://\www.ricetoriches.com! Like twenty flavors of rice pudding and as many varieties of toppings! Stacey has two little children, one-year-old Zach and three-year old Hannah, and a husband who is in treatment for colon cancer ! She also has her own business, so it was really a treat that she did this! She came into Manhattan just to see me for a few hours!And next time she wants to come to Grand Central to pick me up and take me to Beacon, NY by Metro North to see the DIA Arts Center! Anyway, we met at Grand Central and took a bus to Bowery and Eighth and then walked (or rolled) to NoLiTa (North Little Italy)-- to be exact -- to Spring Street to have the most awesome rice pudding! I have to say that the Manhattan bus drivers were fabulous with the bus lifts! If I lived in Manhattan, which has always been my dream. I could go anywhere with those buses and my motor chair.
I am in the process of applying for the Consumer-Directed Personal Assistant Program for my long-term care plan. More on that later because this entry has been on my wordperfect for a week now, and it is time I got it on the webpage!
Sunday, August 6, 2006 8:57 AM CDT
I emailed a few PALS (that is an acronym for “people with ALS) and they all said that what I experienced yesterday and have experienced in the last month or so, sounds like
“emotional lability” or “emotional incontinence”. The latter is not to be confused with “urinary incontinence” which is the inability to hold urine. Emotional lability or emotional incontinence is inappropriate laughing or crying, and/or the inability to control the laughing or crying once it starts. And consistent with the distorted voice quality of ALS, I sometimes comes out sounding strange.
At my clinic appointment in May, Dr. Scelsa asked me about my mental state, and I told him I was starting to detect a little loss of control of my emotions, He increased the dosage of paxil (paroxotene) to 40mg from the 30mg I had been taking. But he said, there has been success in treating emotional lability using a combination of two drugs that are usually prescribed for other reasons. He said he would try this next if the increased paxil didn't work.
In the meantime, the letter my buddy (and fellow PALS) Norma Steck wrote to VNS from the perspective of a patient and a nurse of 30 years, seems to have had an impact!
Not only did a supervisor from VNS call about it, but there was a big change in Nurse Raisa's attitude yesterday when she came to pre-pour my medication - yes, she has been coming to do this weekly.
Thursday, August 3, 2006 8:54 AM CDT
I just wanted to put in a short entry to let everyone know that I have been consumed by a great big black cloud of helplessness, hopelessness, and despair. I hope this passes, but emitting from me is an anger that is frightening me. Yesterday I said something that was insulting to a friend. I didn’t mean it; it came out of frustration. She said she still loves me but I don’t think I am really convinced.
I don’t want to become my worst enemy. A weird wailing is emanating from me – that eerie inhuman-sounding crying that comes with the distorted voice quality of ALS. But it would scare anybody within earshot. I fear it will compromise my breathing and my teeth start chattering uncontrollably. I can’t seem to concentrate on anything and I don’t have the mobility to escape as I would in the past, with useless hobbies and obsessions disguised as “interests”. Could this be the first time in my life that I have been really forced to take a good long look at myself? My insistence to hang on every promise of “I’ll stop by” and “We will definitely have fun this summer” has turned into an anger, laying of blame on everyone but myself!
Did the disease make me suddenly progress, or am I stressing myself out to the point of eventually engineering my own demise?
They delivered a mattress that was too high, and now the mattress is too low and the aides can hardly lift me out of bed now. I know I need to buy a mattress topper but I cant get out of my funk to buy one. I am more bothered than ever by incompetence and cant get on the phone myself. When there is a change of plans, I am more disappointed than I have ever been. And yet on the other hand, I am afraid to have people see me in such a state! I have not been outside in this heat wave and yet I should be grateful I am not one of the thousands of homes without power.
It is no one’s fault I got this disease and yet I am angry that half the summer is gone and I can’t see the beach, central park, or even smell a barbecue! In the last few days even Seinfeld reruns have not gotten a laugh out of me. I made the mistake of misinterpreting some nice gestures and now it is almost getting more and more difficult to justify fighting to stay alive, Until I look at Hannah and know that I don’t want her to have another upheaval in my life
I know many of you are reading this and saying “Stop feeling sorry for yourself” but I am wondering how I could have been in denial all this time, thinking life could be meaningful and how I could have thought I would be surrounded by friends and “loved ones”? Whatever made me feel I could be entitled to this? I know now that I was not the person I couild have been, should have been. And the worst part is: I will have no chance to make amends!
Sunday, July 30, 2006 8:39 PM CDT
Well I got my wheels back. It is so oppressively hot here that I have hardly gone out. I got an invitation to the beach club and I faced another frustration. I tried to have my aide book a trip on Access-a-Ride connecting to Nassau Able-Ride to Silver Point. Haley did this for me last year and called Access-a-Ride to book the whole thing, including the trip on Nassau Able-Ride. But this time I had my aide Beverly call and Access-a-Ride said I had to book the Able-Ride segment directly with Able-Ride. Well, Able-Ride said I had to book the whole thing with Access-a-Ride, since I am an Access-a-Ride customer. We went back and forth with this, even speaking to a supervisor at Access-a-Ride, who even insisted we had to fax Able-Ride for eligibility, something I did last year. And to add to the confusion, my aide kept saying that Silver Point was in Long Island City. When I explained that we were going to Nassau County, I realized that she didn't know Long Island from Staten Island!
It is hard enough to deal with these frustrations when healthy; harder to deal with them when you can't speak and the person who is doing the speaking for you doesn't know Nassau County from Nassau, Bahamas! The upshot is that the aide didn't really want to go anyway, She would rather earn her $7.50 an hour in an air-conditioned apartment in my comfortable chair doing her needlepoint! Guess you can't blame her! So record heat- wave and I couldn't get to the beach! Oh well……
The summer has flown by and I wonder if it will be my last. I don't know how much longer I will be able to use my hands at the computer, or get in and out of a car. Or even how long before I am totally bedridden and completely paralyzed. I have gotten worse in just the last month. I need help doing almost everything now. It is hard to take life one day at a time these days. There are probably people I feel close to, that I will never see again. I am getting more and more frightened about how I will survive.
Friday, July 21, 2006 9:28 AM CDT
First, I have to say that, although I have had a very challenging 2 weeks or so, I feel extremely guilty complaining, when there is full-scale war in the Middle East and over 2000 homes in Queens have been without electrical power for 5 days in the middle of this severe heat wave. In the scheme of things, I consider myself pretty lucky.
Most inconvenient of all, my motorized wheelchair is in the shop. On Thursday July 13, I noticed that the on/off switch would not work. This meant the wheelchair was on all the time, and I could never recharge it, because the wheelchair will not recharge while it is on. No way around it; it had to be fixed! I called the company, Rehabco, and they said they would pick it up the next day. Well, they called the next day late afternoon to say they would not make it. They finally came on Monday to pick it up but have not returned two phone calls to ask when I am getting it back.
Although I have been housebound due to no wheelchair, it has been such a heat wave that I am lucky I can sit inside with the air conditioning. I spend more time napping however because it is so exhausting getting around the apartment. I had a great break on Saturday July 15 when I went to Chris Pendergast's house for the after-Ride (for Life) barbecue in Miller Place, Long Island! Chris Pendergast, who is living with ALS for 14 years, (very slow progression) founded Ride for Life. Every year, participants walk from Manhattan to Montauk in 10 days, the ALS patients in their motorized wheelchairs. I only went for half of a day, from Washington Square Park and over the Brooklyn Bridge to Grand Army Plaza in Brooklyn. I am hoping that I will be in sufficient shape next summer to do the entire ten days! Hotel rooms and food are donated and it is such an inspiring event. Check it out at www.Rideforlife.org!
The aide situation is a little more tolerable, when the regular aides show up! I am looking into Concepts for Independence, a program whereby I hire my own aides and they are not restricted to the constraints of agency rules. I can also have friends and certain relatives sign on as “Caregivers” and get paid for pitching in, if I want to. I also met a woman at my monthly support group meeting who runs a smaller agency out of Brooklyn who would see if I can switch to her agency. VNS is just too big and impersonal. By the way, Debbie Hirsch and Lawry (standing in for Louise) came to this month's support group meeting and enjoyed it immensely. Seven members of a Mexican immigrant family came with their family member who has ALS. They didn't know the first thing about getting home care, She has two small kids at home and her husband works. Her sisters have been helping out, but they need some additional help. We learned that there is a homemakers program in New York City especially for moms. They will actually take care of small children and cook meals.
Update: I suspect Nurse-Devil had a talking-to, probably as a result of a couple of phone calls on my behalf (and even a letter from fellow patient, friend, and former nurse Norma Steck. Nurse Raisa comes weekly to pre-pour my meds. When she came yesterday, I was napping with my ventilator on. She seemed a lot kinder and she even kept her voice down to an acceptable level. As for aides, Beverly called out sick today and I got a “Fill-in” who has come before - notorious for falling asleep in my chair and snoring! I now need help showering. I am getting stiffer and start sliding off the shower chair if I don't hold on with at least one hand. My legs stiffen up without warning these days and I have to have the aide bend my knees for me. This should be a fun day with an aide who has to be told what to do! I am praying for the safe return of my hostage wheelchair!
Sunday, July 9, 2006 9:02 PM CDT
Well today was the icing on the cake. Ellita called out sick and Gulshan, who was there all night, was stuck waiting for relief. Finally the agency called to say that they had nobody who wanted to come, so could they send Gulshan home to catch some sleep and a shower, and could I get a family member, friend, or neighbor to come and stay with me for the afternoon? Oh, and I had to tell them who was coming so they could verify and would check in later with me. I went ballistic. Not only could I not ask someone to do that, but I am sure if they wanted to spend a Sunday afternoon with me, I would have plans. I wanted to stay alone for the afternoon but the agency said that if VNS saw that I could stay by myself, they would take away my homecare!
Well I was livid and went into meltdown mode. I could not stop the emotions! It totally ruined any prospect of having a decent day! Finally at one p.m. a very nice aide named Christine arrived. I ended up having lunch at 3 with her, at the local Mexican place but I am exhausted and completely devoid of any energy I had!!!! Can you imagine calling someone on a beautiful summer day and asking them to put everything aside to come and babysit me?
I am feeling helpless. I now need help showering. When I don't hold on to the shower chair with one hand, my legs stiffen up and I start to fall off the chair. It is a frightening feeling and for the first time, I really felt that I wouldn't mind going to sleep and not waking up. Then I remembered Hannah and knew I have to stay alive for her.
But my quality of life is worsening and I can't imagine what will become of me!!
I have fewer laughs and more tears! One laugh I had was July 3, when I went to the Mets game with Jane. The wheelchair section is right on the field level!! I also saw “Superman Returns” at the movies. Apart from that, I see no one but the aides, and seem to be fighting for my right to stay on this earth and get cared for. It is getting harder and harder for me to find self-fulfillment and the people around me are busier than ever. I feel that my window of opportunity to enjoy life is slipping away and it won't be long before I am confined to my bed full-time. I am finding it harder and harder to fight this disease. I am thankful to still have use of my hands but my difficulty speaking is getting the better of me. I am not as good at weathering life's little snags. I melt down more often. I am no longer feeling "brave". I am feeling frightened!
Sunday, June 25, 2006 7:10 AM CDT
VNS “WE BRING THE AGGRAVATION HOME”
You know all those television commercials that say that the Visiting Nurse Service of New York “brings the caring home”? Well, don't believe it. At least the person who made that TV spot never met my nurse Raisa!
I asked her to come in and look at some scratches on my leg caused by the infernal itching. One of my night aides, Gulshan, is not quick enough and when I was itching, she didn't know to get the Aveeno cream quickly and then didn't rub it in fast enough. So my leg itched from the stocking being on all day and the hot weather, etc. PS I kept the stockings off for the next two days, and raised my legs whenever I could, and they hardly swelled, proving an experiment to see if I can go without the stockings for a day or two when I go to the beach.
But I digress. I asked Raisa to try to teach Gulshan how to treat itchy skin and also to tell me the proper treatment for the sores. She told me that the sores were from scratching and not from the aide. I said I knew that, and my point was to show the aide how to work quickly to allay the itching and prevent me from scratching up my body. She said “why don't you put the cream on yourself? Why are you depending on the aide?” I said “if I could reach, wouldn't I do that?”
So she says accusingly “well you had no problem reaching to scratch”. I showed her my wooden back-scratcher. “Oh, let me show you” she says as she takes a bed pad (chux) and wraps it around the back-scratcher and yells “Now you can apply lotion yourself”
“So why is my aide here?” I ask.
And then she nearly bowled me over with “The goal here, Ms. Cohen, is to move you toward independence! So you won't need the aide. See, you can do so much for yourself. And as you improve, you will need an aide less and less. As a matter of fact, we are looking to get you into a long-term program and I can't find one that will give you twenty-four hour care. So let's teach you how to live independently.”
I exploded. I typed out to her “How much do you know about my disease?” She responded “I know all I need to know”
“No it seems you know nothing” By this time I nearly lost it! This disease leads to total paralysis and death.” I told her about the fatigue that comes on with the tiniest of tasks and she said “Nobody is asking you to run the mile”
“ You have a lot to learn about ALS,” I told her “and u are not taking away my care. I cannot live totally independently and this discussion is over between you and me!”
She said “I will come Tuesday night to see the aide” and walked out slamming the door.
She knows all she needs to know? Apparently not! This disease is not MS and it is not stroke recovery! We DO NOT get better!!!! The visit from a nurse is supposed to be a comforting feeling! This one stresses me out every time she comes. She is forever acting as if I am trying to scam the system! Look who she is talking to! Would I not live totally independently if I could?
And additionally, we had a speaker at the all-day ALS Symposium yesterday at the Javits Center during a seminar about home care. Apparently, Medicaid is on an all-out campaign to cut home care to satisfy a deficit! They are getting after the nurses and social workers to cut more than corners. How many scammers are out there, especially with fake social security numbers? Do they go after those?
VOTE DEMOCRAT IN THE NEXT ELECTION. GET THOSE REPUBLICANS OUT!!!!!!!!
Tuesday, June 13, 2006 5:13 PM CDT
Well the weather is getting hot
Last week I couldn't look at one of my area rugs anymore so I had it taken up and bought a smaller but much nicer area rug. Nice and clean!!! Now the other one is bothering me and that one is next.
I am emptying out one of my bookshelves. The books are going on eBay and then when the bookshelf is empty, it goes on Craigslist. Then I have space to make a sleeping alcove and call Time Warner to change the cable wiring, so I can move the computer.
Sunday night I went for birthday dinner with Dad and Debbie and Andrew. We had a really fun time. Dad is very comfortable with having given his dog Cassie to them. There couldn't have been two better people to adopt an animal! I have to start looking for a dress for their wedding on September 17! This won't be an easy task! Michelle Auletta sent me a German dark chocolate bar filled with marzipan! I ate it all!
Last night I went to Annam Brahma restaurant with Louise and her two sisters who are here from Ohio. On Saturday I had a really nice visit with Warren. This Saturday, Jennifer and Judy are coming to take me to lunch for my birthday, which is nice considering that I had to be a no-show at Jen's birthday party at LIPS last Sunday when Ellita called out sick. I had a fill-in aide, and I couldn't bring someone I never met before, to a restaurant where all the wait-staff is in drag!
I wish some people could appreciate a little more, that disappointment in the way of broken plans, affects me more than ever before, and more than healthy people. Besides the fact that I am more vulnerable feeling-wise when it comes to disappointment, most of my social engagements, few as they are, have to be carefully orchestrated with such details as access-a-ride, aide coordination, and extra time to get ready! And, I cannot just pick up and do something else or go by myself anyway!! Birthday time and winter holiday time always find me at my most emotionally fragile. At holiday time it hurts to hear everyone talk about their plans. And, even worse, I heard about a birthday party for a friend recently - another friend asked if I was going - I wasn't invited. And an invitation to Chris Pendergast's house as an after-party for Ride For Life -(can't get to Miller Place without someone to drive me) - another reason for frustration. I can also do without "I will see you soon -- I really will -- but I have been so busy!" from some people who live really close! If I am low-priority, that's fine, but don't say anything! I can certainly understand as much as anyone, that life gets busy! And how do I answer "how are you?"
"Fine" sounds a lot better than "Still alive and not as scary-looking as you might think. And my doctors tell me I am not contagious!"
One last thing - Ellita and I went to the Queens Mall today and saw some of the most beautiful bedding for sale! I am using all kinds of mismatched sheets and pillowcases so I was tempted to buy some new pretty bed linens. I can't bring myself to buy anything nice for my apartment; it seems like a waste for someone who will have to go to a nursing home at any time (or worse). And beautiful things for the kitchen-as time goes by, fewer people come over anyway. I feel all the time that I should only spend money on practical comfortable clothing and that I should get rid of whatever I don't use so that there will be less to throw out when it is time for me to leave. I don't feel attachments to anything anymore and am trying not to get too attached to anyone, because they will run sooner or later, when they get “busy”!! It is called self-protection!
Wednesday, June 7, 2006 9:11 PM CDT
Today is my 51st birthday and I have to say it is bittersweet. I am happy to have lived this long so far but I can feel my breathing becoming more and more difficult. I was consumed with the “will this be my last birthday?” question I guess everyone with a terminal illness asks herself. It sometimes gets harder to live “in the moment”
Hannah is eight now. For almost a year I have given her a good life far surpassing her former existence in a wire-bottom cage. As I write this she is in her hiding spot under the ramp leading to my bed and looking at me as if to say “I am waiting for my treat mom.”
I hope I will at least live long enough to keep giving her love!
On June 24 is the annual ALS symposium at the Jacob Javits Center for ALS patients, their caregivers and families. It will be my third year going. It is enjoyable and the seminars are great! In the past year I have gotten to know lots of great people through the symposium and my support groups. Ride for Life is actually sending me a young woman who will come visit me on a semi-regular basis. I am grateful for all of the support I get from these groups.
But the emotional lability I was told might happen has finally grabbed hold. When I think of something funny I can’t stop laughing; this makes for some embarrassing moments. But the crying is worse. I can’t make it stop and the pathetic wailing that comes out of me sounds like a sick moose. It scares even me!!!! And I know it frightens anyone around me. It is a neurological symptom but try explaining that to people when you can’t speak and especially while you are crying. Today when Tyler called to wish me a happy birthday I was so overcome with emotion that the tears flowed! That poor thirteen year old boy!! I know he wished he could come and give me a hug! And poor Ellita didn’t know what to do either.
Just another development in my journey with this disease!!!
Saturday, June 3, 2006 9:09 AM CDT
Cb June 3, 2006
I am feeling overwhelmed with plans for living out the last days of my life
The first thing I am doing is clearing out my living space of things I have accumulated for hobbies and interests that I will never be able to continue pursuing – stamping, sewing, any large art projects, and other things I had developed an interest in the last few years.
In 2002, I adopted my first bunny and got involved with rabbit rescue. Then ALS struck and I know after Hannah, I will never be able to have another pet. And I can’t even volunteer in a shelter. I would do anything in the shelter if I could, just to feel that I am doing something worthwhile. I had bought a sewing machine and took a class in how to use it. Then ALS struck and I just don’t have the manual dexterity anymore. I had really begun to meet such an assortment of quality people through bunny rescue and my art courses. And I was looking forward to advancement in the education field, possibly moving into administration or guidance. Then of course I had to leave work. Every week, every month, every day sometimes, I have to face a loss or giving up something. Of course I had to give up my car and driving, so I have to wait for invitations and transportation to get anywhere. I can no longer just call someone and say “what are you doing today? I will come out there” Now someone has to come to me or pick me up!!
This week I had to give up on getting contact lenses in my eyes. I don’t know what it is – they keep falling out. For some reason my left eye won’t stay open long enough to get the lens in. I don’t know if my eye is too dry but any amount of saline solution doesn’t help, and maybe my left wrist doesn’t turn properly to insert the lens, but even when I get it in, it is so uncomfortable. So now I have to wear glasses all the time, and the only ones I have is a horrible pair of bi-focals with a three year old prescription which I can hardly read when I try to order prescription sunglasses online. And no one around here seems to take Medicaid and eye exams and glasses are pricey, but I just have to suck it up and use the trusty credit card. They don’t make it easy to find out how to use my benefits!!
I was alone last weekend – Memorial Day Weekend – until Monday when Jane came over and then Debbie and Andrew brought Cassie and we went to the dog run. Just the walk to the dog run was fun with them. Debbie and Andrew are two of the most life-savoring and positive people I know. They never fail to make me laugh. We ran into a group of senior citizens who talked our ears off about “old times” and we enjoyed it.
I always have a good laugh when I see them.
I am trying to educate people. This week I gave to Beverly, one of my aides, a pamphlet I received from the United Spinal Association on Disability Etiquette. There is a chapter on dealing with people with speech difficulties with tips such as “look directly at the person’s lips” and “let them finish their sentences”. And the big one for anyone with a disability: DON’T TALK ABOUT THE DISABLED PERSON WITH SOMEONE ELSE, IN FRONT OF HER” I had to raise Beverly’s consciousness about this. When people stop her and ask her questions about me, she is now going to tell them to talk to me. "How does she feel?" Only I know how I feel, so ask me, not my aide! "What is wrong with her?" Well, I have news for you lady! My aide only knows because I told her. And she is not permitted to talk about my condition without my permission anyway, so just save the middleman and ask me!! The agency is not allowed to divulge my condition. As a matter of fact, when I get a new aide or a fill-in, I have to let them know that I am not deaf and I am not mentally challenged despite my inability to speak!
We went to the beauty salon this week. I have been going there for twenty years and I was disgusted! For one thing they asked Beverly “does the headrest of her wheelchair come off?” Beverly has never gone to the salon with me before. Ask me – I can tell you that they put a towel around it!!
And when I was ready to go to the sink to get my hair washed, the woman yelled to Beverly “come over here and help us get her to the back!!” It is a motorized wheelchair, idiot!! I can get myself there. I just need to hold on to her to pivot and transfer! And here was the “piece de resistance!” As two women struggled to ineptly pivot me (even Beverly was surprisingly unskilled and I had to show her what to), two strapping, healthy, and strong male hairdressers (no, not gay) stood by and watched. And furthermore my hairdresser, whom I have used for a good part of the last twenty years, addressed my aide with all questions. I would respond by writing my response on my slate and he would still talk to my aide. Helloooooooo …….. I am not deaf and I am certainly not invisible! And furthermore, you took my payment of $97.00 ($82 for a color, wash, cut and blow + $5 tip for the rude shampooer and $10 for you!) with no problem! Time for a change of hair stylist –this is just too much to pay to be treated as a non-person!!
Dad came over yesterday and brought a 12-pack of Diet Coke—YAY!! Carmen sent another box of chocolate in her self-engineered “See’s Candy of the Month” plan!!" Hey remember when Ray Barone joined up his parents in the “Fruit of the Month Club” (“Too much fruit, Raymond!”) I finished my friend Jules Tragarz’ book and started “My Sister’s Keeper” by Jodi Picoult”…..okay a year after I got it as a birthday gift from Haley, who will finally be able to borrow it. I still have a beautiful bookshelf to read through and empty, in order to sell it and create some space!!
Thursday, May 25, 2006 8:36 AM CDT
BYE BYE LYNETTE?
I never thought this would ever happen and certainly didn't want it to happen so intensely. I have gotten attached to two of my aides so strongly that, when I heard yesterday that one may have to leave, I find myself grieving as I never dreamed I would.
Due to a decision relating to her family, Lynette may not be able to work nights anymore. Since I have had Beverly during the day for a while now, they would not give Lynette back her days with me, even if she asked for it.
Lynette was more than just an aide to me. She was a couple of years younger than me and we clicked. She loved Hannah, having had rabbits in Guyana. She went above and beyond the call of duty where Hannah was concerned, picking her up to brush her and clean her poopy bottom, and administering medicine when needed. I am going to see how this plays out, but I have a feeling I will suffer another loss. Lynette, if you are gone, I hope to keep in touch with you, and I will miss you around here.
ATLAS PARK GETS MY APPROVAL
I give a “thumbs up” for Atlas Park, which I had the pleasure of checking out yesterday. This is a brand new, and yet-unfinished shopping mall in Glendale. So far, there are Chico's, Coldwater Creek, a fabulous store for pet upscale pet supplies, and Steinmart. Coming soon: Cold Stone Creamery, California Pizza Kitchen, and lots of other restaurants and stores. It has a beautiful fountain, grassy areas, and WHEELCHAIR ACCESSIBLE RESTROOM!! My wheelchair fit neatly inside and the grab bars were such that I was able to do my entire bathroom thing with no assistance at all!!!! Complete independence gave me a big smile!!!!! The entire place is handicapped accessible and the stores are surprisingly upscale. You would think you were in Manhasset rather than Queens.
If you live anywhere near Queens, check it out!
ANOTHER HANNAH SCARE
Well, Hannah gave me another scare! On Saturday I noticed she just was not herself. She did not jump up on the bed all day and I noticed that she had only come to me once during the night for a short visit, and then left and stayed in her box the whole night. Earlier in the evening she had stayed in her box and hardly came out . The biggest shock was that she bit Lynette. She loves Lynette, so when she did this, I knew something was wrong! The next day I had Donna come in the morning to give her mylicon and reglan. Before that, Donna called Dr. Saver, who said to eliminate her greens that day and give her the medication in the morning and at night. In the afternoon I noticed that she was more back to herself so I felt comfortable going to a street fair in Forest Hills with Ellita, and Jane and Louise for a while. We got caught in the rain, but it was a nice day out. In the evening, Debbie came and gave Hannah her evening dose. It is always fun when Debbie comes - she amuses me with the stories of Casssie. Cassie was my father's dog whom Debbie and Andrew adopted. Well, they took Cassie to “doggie boot camp” and she is a great student. She now sits on demand, stays, and heels. She loves Debbie's bunnies Angel and Nickels. She gives Angel tongue-baths! As for Samson the cat, well, he hisses at Cassie. Hopefully they will work it out!
Well it is now 9:30 and no morning aide yet. Gulshan my night aide is still hanging out until my “fill-in”, Ellen, gets here. The advantage (or disadvantage sometimes) of the 24-hour aide schedule is that there is always someone here unless I release her. One aide has to be here until relief comes.
I am still working on signing up people for my “Walk to D'Feet ALS” team - “Fern's Fighters”
Friday, May 19, 2006 5:06 PM CDT
Yesterday I was watching the season's finale of CSI and one of the characters made a comment that in some ways was the silliest thing I ever heard. He was talking about the tragedy of being murdered and he said that he would rather die of a long illness because it would give him the time to do those things that he otherwise would never get to do. At the very least, it would give him the chance to say goodbye to family and friends.
I thought about that for a while and wondered what I would have done, if I had the time to “fit it all in”. I would have taken a trip to visit all the places I always wanted to, but never have, and revisited places that I love - England and Ireland. And among those trips, I would have fit in a drive across the country or to parts of the states I have never visited. I would definitely have taken a fun childlike trip to someplace like Orlando to see Disney World and Epcot, I would have walked around Manhattan every day while I still could, and I would have visited every museum. Unfortunately for me, by the time I had left my job, it was already too late to do this alone. There are ways to travel, as I have learned from other PALS (people with ALS) but they require planning, money, and most of all, someone to accompany me. ALS has zapped my money, and I am lucky if, every couple of months, I can convince someone to accompany me to a movie, an outing in Manhattan, or even some quality time exploring some place out of New York for a day-trip.
In retrospect, back in January of 2004, when I received my diagnosis, maybe I should have left my job then and taken a trip. By the time most of us are ready to accept that we are dying, we are too incapacitated to do anything on our own, if at all!! And I was shocked to hear this character on CSI say he would rather have cancer! Well how many people get cancer, get the cancer cut out, and then have to withstand treatments that zap their energy, and/or leave them in worse shape than they were before the cancer was found.
Do you have the opportunity to say goodbye to loved ones and friends? Yes, if they stick around long enough! I asked Warren Schiffer, when he visited last weekend “why are people so scared of ALS? If you have cancer or a heart condition, why does everybody seem to understand it and why does it seem more deadly and grim, even though there are treatments and hope for those diseases in a lot of cases, and ALS is always fatal, in most cases in 2-5 years after onset of symptoms?” He had the answer: awareness and familiarity. You would be hard-pressed to find someone for whom cancer or heart disease, or both, have not touched personally. Everyone knows someone who has had cancer, and a lot of people have had it themselves. Even AIDS has lost the stigma it once held.
And, a shocking fact is this: as many people are stricken with ALS as MS, but MS gets triple the research money. The reason for this is simple: ALS patients die faster so there are never as many people living with ALS. People need not be afraid of ALS. They need to learn about it, and know that the ALS patient can also benefit from quality time and entertainment from friends. And before we become bed-bound quadriplegics, or strapped to a respirator most of the day, we can leave the house for a while and enjoy ourselves and, yes, even take trips. Just ask Adele who is living with ALS for the last ten years - she and her mom just got back from Ireland and Paris!! And ask me after I go to the Mets game next month. There is a wheelchair section and my friend Jane was resourceful enough to find out and get tickets!! I am looking forward to it!
Thursday, May 11, 2006 10:39 AM CDT
Tuesday is the building's annual shareholders' meeting. It is also the night of my Beth Israel support group. Normally this would be a no-brainer -- give my proxy to a neighbor and go to the support group. It is going to be a non-election for the board; same old people and same old complaints from residents, answered by the building management with the same old defensive responses, and always topped off with "our board members work very hard for no pay. If you have so many complaintsz, why dont you run for a place on the board"
and then one of us reminds them: "you have all the proxies. you put your own people in. How is a new person supposed to get on the board?"
so I would prefer to skip this nonsense but, in answer to a claim by the Commission on Human Rights, they have arranged the meeting to be held in a newly remodeled basement meeting room. So, it really would hurt my case fighting for an automatic door and a ramp in front of the building, if i didnt show up for this meeting, so i am skipping the support group this month at beth israel.
I decided to try going to Long Island on the Long Island Rail Road which is supposed to be wheelchair-friendly. And guess what? It is! The ramp at Forest Hills leads right to the platform. However, if you are going east, you have to go to the westbound side to get the ticket. now the other negative is that, although i get a half-fare disabled ticket, I had to pay full-fare for Ellita. And it is essential to buy the ticket before getting on the train. It used to cost $2 more to buy a ticket on the train -- now it is double!!!
when the train pulls up the conductor sees a wheelchair and knows to put out a portable ramp. but you have to find the car with the handicapped symbol on it. once on the train, there is a disabled section for wheelchairs...Very cool
When I arrived in Rockville Centre, the elevator to the street was working perfectly (thank goodness)
to get to Oceanside --as a matter of fact all the way to Long Beach- is the N15 bus.
Ellita and I had lunch with Haley, who treated us to great food at Chadwick's, but then Haley bit into a bit of gristle in her hamburger and broke her molar in half!! it figures -- we were all having such a nice time !! oh well, now that i know what to do, i will go to long island again!!!!
I got a package with about a hundred cookies from Jana Byers (well it seemed like a hundred!) delicious!!! and some chocolate peanut butter fudge....yummy. the cookies really taste home-made!!!!
and Devra Milam sent me a box of Ketchi-kandies from Ketchikan Alaska...... hand-crafted candies and chocolates. And it included my absolute passion ------marzipan!
I still go back and forth between hope and despair. But when I am in my moments of despair, it is nice to know that i have my good moments too. I sit in my despair for a while and go through it, like a passing agonizing pain, and hope for some relief. the usual thoughts of uselessness, loneliness, and anger are part and parcel of this illness, or any terminal illness, I guess.
Tuesday, May 2, 2006 3:29 PM CDT
RIDE FOR LIFE, NEW WHEELCHAIR, AND CLINIC VISIT
On Saturday,with the encouragement of Norma Steck and Rich Kornak of my ALS monthly support group, I participated one half-day of the 10-day long Ride for Life. This is an incredible organization founded by Chris Pendergast eight years. Chris is a former teacher in Northport, LI who was diagnosed with ALS fourteen years ago. At the time of his diagnosis, he had young children that he never expected to see grow up. He has since walked a few steps down the aisle at his daughter's wedding and I believe I heard someone say that he even has a grandchild. Fourteen years with this disease, without a tracheostomy, is extremely rare; he has an incredibly slow progression
For my part of the ride, I rode my motorized wheelchair from Washington Sqaure Park and over the Brooklyn Bridge. I couldn't make it all the way to Prospect Park because we were more than an hour behind schedule and I had access-a-ride coming to the Brooklyn Public Library at Grand Army Plaza at 5:15.....a shuttle with a wheelchair lift whisked me to the access-a-ride spot right at 5:15 and Susan Wahlert even waited until the van came. What a great group of people and what an organized operation!!! They put sunscreen me as I was riding, checked up on all the patients every two minutes and were the most supportive people I could have ever imagined.
As I write this, they are on the road in Long Island and will arrive in Montauk for a candlelight vigil on Sunday.
check out www.rideforlife.com
On Thursday I went to the Helen Hayes Hospital for the final fitting on my own motorized wheelchair. They are putting on a mount for my Mercury communication device, and will deliver the wheelchair to my apartment late this week or next week.
Yesterday I had my quarterly clinic visit at Beth Israel.
I lost 10 pounds, which is what I wanted to do. I want to lose at least 20 more pounds. I discussed my "emotional lability" with Dr. Scelsa and he adjusted my medication, and also said there is a newer medication out which he will put me on, if this does not work. But I have been so painfully isolated and lonely! Every day I struggle with this, and my inability to get up and go as I did before.
Dr. Scelsa also said that my muscle strength is actually better since my last visit. We don't know how this happened.
I go through conflicting feelings -- on one hand I can't bear the thought of leaving this world and not seeing Tyler, Rianna, and Jenna grow up. On the other hand, I have really outlived my usefulness and can't bear the thought of' living too long, spending my days virtually alone and isolated. I am lucky I can still type and keep in touch by email, but what happens in the future? I guess everyone with a terminal illness goes through these feelings
Thursday, April 27, 2006 6:46 AM CDT
Word to the wise: this is for anyone with a serious illness needing home health care, or anyone who could one day be in this situation (which is anyone):
when you get a good aide, do anything you can to keep her/him!!!!
When I first got into this situation I never imagined I could have affection, or even feel close to, a home health aide. But yesterday Ellita called sick and I got a fill-in, the laziest aide you could ever imagine. I have had so many "Fill-ins" lately and some of them just want to sit and watch tv all day.
The aide yesterday was one of these. And why do they always fall asleep during the day? Yesterday I kept counting the hours until Lynette's arrival. When she walked in the door at 7, she looked at the aid and then at me and knowingly smiled; she knew I had been having a bad day. I also didnt eat or hydrate properly yesterday and I feel a little weak today. Harken back to my days of anxiety and depression and what I used to call my "mini nervous breakdowns". My eyes still feel sore from a crying jag I had on Tuesday. You see ALS has a symptom called "emotional lability" - fits of uncontrollable laughing or crying. Up to now, I have only had the laughing fits. Although embarrassing at times, those feel good. But the crying --that was scary!!!
I am going to Helen Hayes Hospital to do the final fitting on my own motorized wheelchair which was ordered about a year ago. Medicaid, and then changes in Medicare regulations managed to drag out that process. I am looking forward to the beautiful ride on the Palisades Parkway
Saturday is my half-day portion of the 10-day Ride for Life
I finally got my new printer/scanner/copier hooked up and ready to go. It was a free replacement for my dead printer which was still under warranty.
Wednesday, April 26, 2006 6:41 AM CDT
well, it gets harder and harder to stay positive these days
some people feel compelled to send emails that start something like "sorry I haven't been in touch but.. I am leaving for Europe (for the last six months?), i have been working so hard (okay i can relate), i have just been so busy!!!!!! but then they go on to tell me about the great things they have been doing : good movies, fun spring day outings, parties, dinners, outings in Manhattan, etc and the email always end with something like :"so write back and tell me what you have been doing !!!!!" I wish I had something to report, but I can only take my aides to medical appointments and such. And I have been thinking of cancelling the aide sometimes in the summer and go out myself but the inability to speak scares me!!
so I take advantage of the times when the aides do the laundry or go shopping to turn off the television, and have some quiet time. The tv is on non-stop, from 7 or 8am until 11pm!!!
I am thinking of the summer......will I get emails with the rundown of "Beach, picnics, days at the park, etc? and me? Unless someone comes to rescue me, it will be inside with daytime tv! I have been having crying jags that i can't stop and my poor aide Ellita assures me that "Everything will be fine" But the disease doesn't get better ...I keep saying I want to do things while I still can, but that "Window of opportunity" is passing me by and I cannot do it alone anymore. And the world is too busy.
The other night a patient came to my support group. He was wheeled in by two private nurses and accompanied by friends. He had a tracheostomy and was staying alive with a ventilator!! I would love to know what gives him such a desire to go on. I figure he must have children..
Tomorrow I go to Helen Hayes Hospital for my new wheelchair and Saturday I do a half-day of the 10-day "Ride for Life"
http://rideforlife.com... I am riding my motorized wheelchair from Washington Square Park to Prospect Park. That was the only day I had someone to accompany me. There are patients doing the whole 10 days -- the first day is this Friday starting at the Intrepid Air and Space Museum to Yankee Stadium and the first part of Saturday is starting at the birthplace of Lou Gehrig. Every stop has a cheering section, food, and there are donated rooms for sleepovers. After Prospect Park, the ride goes briefly to Queens, through Long Island to Montauk!!
Stacey Wogalter, my bunny-rescue friend from upstate wants me to come to Beacon to go to the Dia Center for the Arts and she offered to pay for ambulette transport all the way up there and back! The wrong people live far away!!!!
At least I am a real person who can do normal things, I can go out of the house! You just have to be patient with me, my talking machine, and access-a-ride! it is not that hard. I still manage to have sense of humor; I can still be good company!
Thursday, April 20, 2006 5:58 AM CDT
When you are a disabled person, you are subject to a myriad of humiliations and forms of disrespect.
--- handicapped bathrooms
the real handicapped bathroom should be a self-contained single-person bathroom with its own toilet and sink, or a stall big enough to fit a wheelchair, also with its own sink and a well-stocked seat cover dispenser. Just putting an outward-swinging door and grab-bars in a slightly bigger stall is not sufficient
On Tuesday night I attended my monthly ALS support group at the Phillips Ambulatory Center of Beth Israel Hospital in Union Square. Before my meeting, I needed to use the ladies room. I brought my wheelchair far enough into the stall to be able to hold onto the grab bars but the wheelchair did not fit all the way inside, so there i was doing my business with the stall door open, and sitting on an uncovered seat. There were no seat covers in the dispenser, and it is near impossible to put toilet tissue on the seat. Even if you are accompanied by a caregiver, let them try to step over your wheelchair, which is now blocking the door, to assist,
Enter a mom with two young boys, one about 2 and the other about 5 or 6. And the mom sees that I have the door open and that her two boys are fascinated by the sight of a wheelchair and a woman using the bathroom with the stall door open. Can you say "free show".. .Also when I try to ask them to step away, of course the words don't come out and I just sound like a crazy woman! And my efforts to tell my friend to ask the boys to step away only fall on uncomprehending ears, as much as I try to point and gesture to the two little boys. What am I getting so agitated about? There I am with my pants down sitting on a toilet with two little boys watching. Doesn't anyone understand how embarrassing this is? And what lack of privacy. I deserve the same privacy as anyone else when I go to the bathroom.
Talking about me to someone else, when I am there--
What does she have? How did she get it? Can you ask her to sign this? Can you get her to show me ID?
And these are people who have not even tried to talk to me yet., and don't know yet about my speech problems. Are they asking my caregiver to give me a biscuit so I can do tricks? "Here girl, give the lady your ID. Show her how you can sign your name" They see a wheelchair and they see something less than human? Why don't you ask ME?
And God forbid they already know about my speech problems. They yell at me, talk to me like an infant, or totally ignore me. I AM NOT INVISIBLE PEOPLE! and I can hear perfectly!!!!
Don't tell me you wish you had a scooter or a motorized wheelchair, someone to dress you in the morning, get you ready for bed or sweep up and wash up after you! And don't tell I am lucky to not have to go to work every day!!
I have had to give up a lot of money and independence to get these things. I would give anything to be able to clean my own apartment, dress myself, or go to work!!!!!
We don't have to talk about my disease. I am still trying to be a part of the world. I can still talk about politics or other issues.
Please don't ask about a future I cannot predict, or why am I not living with my sister or my dad,or how often someone visits. Please don't talk about things we are going to do together, unless you are serious about it, Nor ask whether I "take the aide" when I go out" Oh by the way, the aide is not "the woman" or "the girl" and she is not expected to tell you where she is from, if she is married, and how many children she has.
And don't act so surprised when I tell you I went to a movie, went to the mall, enjoyed a museum or attended a party! I am just like you in my mind and in my heart !!!!!!!!
Saturday, April 15, 2006 5:30 PM CDT
Life is getting harder and with the summer coming at least I can go outside more. But it is getting sad to think of all the summer fun, and how everyone gets even busier and goes away. I unfortunately am at the mercy of other peoples' invites to be able to do anything or see anybody. I am in a constant race to adjust to the changes in my life and the acceptance that I have become nothing but a burden. I have to be picked up and dropped off and then whoever is considering inviting me, has to decide if they will have the patience to deal with my disability, my speaking machine, or even their own feelings of seeing me "like this". It is getting more and more difficult to keep a smile or a sense of humor about all this, especially since I have two aides I have grown to love and respect, and the agency has sent such horrible ones to fill in the blank spots in their schedules.
I am especially leery of who have in my apartment at night while I am asleep, or even during the day when I am in the shower. It never seems to stop. Last Monday Ellita called out sick because her blood pressure went crazy and they sent a fill-in named Tracy,
As much as the agency is supposed to call before they send a substitute, they sent Tracey with no prior warning. I remembered having her before and thinking then that she is a disaster, but this time was worse. She had opened up a carton of drug items I ordered online and I saw her take my Plax mouthwash out of the box. Now this is an important item because the buildup of fluids in my mouth causes excess plaque. But, the next morning when Ellita reminded me that I was out of mouthwash and I told her I had received some in a shipment the day before, we couldn't find it. Did Tracey abscond with a bottle of Plax? But then we went out and I remembered that I had a $15 gift card from Marshall's. We went into Marshall's and the gift card was missing from my wallet! Do I need to bring the wallet into the shower with me?
the answer is a safe or a strongbox with a lock. IN MY OWN HOUSE!!!! It is getting more and more ridiculous!!!
Saturday, April 8, 2006 3:32 PM CDT
i have not updated in a couple of weeks because i have been too emotional and things have been in turmoil.
I am on 24-hour care now and Lynette is here at night now from wednesday to saturday nights. So that leaves an empty spot during the day from Thursday thru Saturday! well they have been sending a succession of fill-ins, each one worse than the night before. Well the icing on the cake was Sylvia ! I spit up all over myself and she was in the kitchen reading. We had just come in from outside and i was still wearing my jacket. I had puke all over my jacket and pants and top! and even a nice amount on the carpet! Well I called Sylvia and she kept saying "I'm coming. I'm coming" and finally sauntered in, looked completely disgusted, and asked if she should hang my puke-covered jacket in the closet!! she then took the rest of my clothing off, put it in the laundry basket and wiped the closet with a paper towel and went into the kitchen. I assumed she went in to get a mop or something to disinfect and wash the carpet. But when Lynette walked in a few minutes later, Sylvia was reading in the kitchen and clocked out and left! Lynette ended up cleaning the mess!
My pressure shot up to 135/90 and i have been aggravated. Thank goodness for jen who came last saturday and treated me to Starbucks, and Maddy who sent me the most "to-die-for" truffles!! also Jane, who came over with a Reese Witherspoon movie!
This weekend i am in some emotional pain. With Passover coming I am feeling the loss of having no seder to go to! When I see the matzoh in the store and the macaroons and all the other stuff I am reminded of seders in my past! And seeing all the bunnies in the store and Easter decorations, reminds me of Easter celebrations I have been invited to! Like Christmas and New Years, I try to forget it is holiday time!
Anyway I have had Ellita here for the whole week through because the agency had no one to come in Thursday thru Saturday but they say I will have a new aide on Thursday! I am so nervous to see who they send!
Sunday, March 26, 2006 7:42 AM CST
i have been stressed out this week about my sweet bunny who suddenly stopped eating, started breathing heavily and finally went limp in Lynette's arms.
A two day stay later at Catnip and Carrots Vet Hospital, she came home to a daily procession of bunny parents who gave her reglan, a motility drug, twice a day. Toward the end, both Louise and Lynette learned how to pick Hannah up and give her medication!
I don't know where I would be without the local bunny people I have met online through the nycbuns yahoo group!
Tuesday's support group at Beth Israel had record attendance -- 24 people!!! it was bittersweet though because as nice as it is to see new people, it is sad to see more people diagnosed with this disease
CHOCOLATE AND OTHER ATTENTION
Maddy sent me a box of the most sinful truffles, Devra in Alaska sent me the audiobook of "Alaska" by James Michener, Warren came last Saturday with strawberry-ginger smoothie, Louise came to do some of my bills for NYSARC, Donna brought me some Starbucks caramel cappucino, Jennifer Bush came for a great visit yesterday with some pudding and then treated me to a chai latte at Starbucks and a knish from Knish Nosh. Ellita, my day aide from Sunday to Wednesday surprised me one afternoon with potato latkes from Tov Caterers. And just a little while ago, Deb and Andrew came with Cassie Dog and brought me some Carefresh i needed for Hannah's litter box.
Well it seems I have a good regular aide for Sunday thru Tuesday nights -- Idit from Nigeria. Very quiet and considerate!! Lynette moved to Wednesday thru Saturday nights and that leaves Thursday thru Saturday days . I thought I had a regular aide for that slot because this week I had Sylvia for those three days and Leslie promised Haley I would have a permanent aide. But last night when Sylvia left, she said she probably would not be coming back. I think it was the compression stockings -- she told me she hated putting them on. So i am anxious to see who they send next Thursday.
Thursday, March 16, 2006 3:50 PM CST
I have not updated in more than a week because this has been a period of terrible frustration. Every day there seems to be a new challenge and/or frustration!
TO SLEEP OR NOT TO SLEEP
Thankfully, Lynette has taken the night shift Wed, Thurs, Fri and Saturday night! But that leaves Sunday, Monday and Tuesday nights.
Now I was told that I cannot have a "live-in" because I do not have a bed and a separate area for the aide to sleep. In the live-in situat ion , the aide is only paid for 12-14 hours and gets to sleep at night . Fair enough.
So the ALS clinic got the wheels turning for split-shift i.e. two aides a day for 12 hours each. The night aide, I was told, does not sleep. She can doze off, but must be alert to help me through the night if I need help going to the bathroom and to get in and out of bed
First of all, on thursday of last week, no aide until 9:30 and a strange face at that!! I come to find out that Lynette will be here at night..well thanks to the home care agency for letting me know I was starting night service! I was furious at this lack of respect.
The following Sunday night, I got Josette who immediately asked "where do i sleep?" I told her that it was my understanding that I did not have to provide sleeping arrangements.
The next morning Ellita did a favor and showed up at 7am to relieve josette so she could attend a training session
At 8:20 that night Ellita was still waiting for relief so we called the agency who did not even know the situation I was in. They called Josette and found out that she was tired and was not coming that night! Nice of her to tell somebody!! Relief finally came at 9:40.
Ellita told me she is only paid $7.50 an hour!! Not exactly a living wage -- no wonder they find it hard to get good people!!
An assortment of fill-ins and then a visit from the VNS RN who told me "oh! You have to provide sleeping accommodations!" I insisted she was wrong. She insisted she was right but would check with the home care agency to make sure
GUESS WHAT!!!! an email to Sue Zimmerman, my Social Worker at the ALS clinic at Beth Israel, and she called the nurse and informed me that i was right!!
I am exhausted and frustrated by all of this
I NEED CHOCOLATE!!!!
Monday, March 6, 2006 5:38 PM CST
what a surreal day of messes!
first, i woke up and went to sign on to my AOL account, only to find that AOL would not let me sign in and told me to call them on a toll-free number. Thank God for Ellita -- she called and found out that
aol had blocked my account due to "violation of aol's terms of service". And the violation? Apparently, 84 emails were sent from my account to the same 800 number while i slept!
Evidently someone hacked into my account and send these emails. The mistake I made is not to change my password in over a year. Word to the wise -- change your password every month or so. i did and i will keep doing it!! whew!!
SURPRISE! MY NAME IS ELLEN COHEN, I AM MARRIED, HAVE A JOB, AND AM INSURED BY AETNA!
Well, no sooner do I manage to sign on to my email than there is a message from my wheelchair vendor scolding me for not telling them that I am insured with Aetna and now my paperwork has to be started all over again! EXCUSE ME!? There must be some mistake. I am not now, nor have I ever been, insured by Aetna!!
"well, you are and we have to start your paperwork all over again"
I DON'T THINK SO
Literally an entire day of phone calls on my behalf and emails and aggravation! And finally at about 4:30 I learn that medicaid did a cross-reference to check that I didn't have any coverage I was not disclosing, and they came up with an Aetna account. But the Aetna client they came up with is an Ellen Cohen who is married and who is insured through her employer. Different social security number and date of birth, and different name!!
I hope we can get the wheelchair company to believe this and go ahead with my paperwork. Once they get this going, I am just weeks away from getting the chair. I am thankful to the ALS Association for the loaner chair I have in the interim
I had a quiet weekend. No visitors, I watched "Lost in Translation" on DVD and then the Oscars! I was shocked and happy that "Crash" won best picture! If you have not seen this movie yet, SEE IT! Oprah says it will change your life and it changed mine!!
Wednesday, March 1, 2006 8:22 PM CST
A week ago Sunday I got a wonderful visit from Haley, Claude and the kids, and a supply of groceries from my favorite place -- Trader Joe's!! We had dinner from Ben' s Best and the kids entertained me as always. Rianna and Jenna used my markers to do great artwork and Tyler borrowed my NY Times and thrilled me with his knowledge of current events. What was destined to be an afternoon of cabin fever turned out to be loads of fun.
thanks to Debbie too for visiting and cleaning Hannah's poopy butt and to Jane and Louise for their visits and Louise's help with bill-paying.
These are improving. The TED stockings are certainly helping the edema and aveeno anti-itch lotion with oatmeal helps the infernal and agonizing itching. My feet are starting to look more like feet again.
I really need this more and more! The application is in VNS' hands and should take a couple more weeks. My VNS nurse, Raisa, is going to check on the progress this week. on Saturday night when Lynette left she didn't close the window all the way and it was one of the coldest nights of the year. So, not being able to put the covers over me, I nearly froze to death. I could hardly wait for Ellita to come in the morning and close the window. And it is getting increasingly harder to get in and out of bed at night. The result is that I am not sleeping well at night at all, and have to make up for it with daytime naps!!
I look forward to these every month. Last Tuesday was the ALS Association group at Beth Israel and this past Monday was the MDA group at All Souls Church on the Upper East Side. I am happy to report that Access-a-Ride was flawlessly on time all four directions!! what a pleasure!!
Saturday, February 18, 2006 2:31 PM CST
SWOLLEN FEET AND LOWER LEGS
The correct term is "edema" and boy am I experiencing this!!
For a while now, due to inactivity and immobility, I have been suffering with edema in my ankles, feet, and lower leg.
Well, ,merely keeping it elevated didn't work anymore and, in the nighttime, they itched terribly and of course i scratched them, causing open sores. Next thing to happen is oozing and I will spare some of the details. On my last visit to the clinic, I got a prescription for TED compression stockings and Louise went to the surgical supply store for me but they said they had to measure me personally.
I became really concerned in the past week when they really began to hurt, and the scratching became wounds!! I emailed Eileen at the ALS clinic and her message was : "get those TED stockings on your legs NOW!!! So on Wednesday, Ellita called sick and in her place came Sandra, a cracker-jack twenty-year veteran of home health care, She took one look at my situation and off we went to the surgical supply, all the while warning me about the risks -- blood clots, ulcerated even-uglier feet and legs, possible death if the blood clots went to my heart and lungs.. etc. However, you can't put synthetic compression stockings over a leg with open wounds, so Sandra called the visiting nurse and insisted she come over ASAP! Raisa, my visiting nurse came, wrapped the leg in gauze and instructed me to keep them elevated. Two days later, she came and said the wounds looked healed and ordered the TED stockings put on. They have to be put on in the morning after i get up and shower, and taken off last thing at night. Problem is that I am still waiting for my night aide shift to go through, so the aide has to take them off at 8pm before she leaves. AND let me tell you how sexy these things are. I used to laugh at the little old Russian ladies in my neighborhood with the knee high stockings even in the warmest weather.. well now THE JOKE'S ON ME!!!
these are now another pleasurable part of my wardrobe repertoire!!!!
Warren came by last Saturday and got me registered with a books-by-mail service through the Queens Library. He also brought one of his signature fruit and ginger smoothies from the health food store in Long Beach.
Stacey sent me Valentine's Day chocolates,and I also got beautiful cards from Debra Goldstein and Patty White!!
This week I have my ALS support group meeting in Union Square on Tuesday night.
The second round of paperwork for my motorized wheelchair is making its way around the circuit
Friday, February 10, 2006 2:29 PM CST
everyone has dates in their life that are pivotal. one of my milestones passed this week. Feb 7, 1964. Forty-two years ago I went to JFK Airport on a field trip with my fourth grade class. It was the first time I would ever see the inside of an airplane. Was it this experience that whetted my appetite for a long airline career? Perhaps. But I am sure that seeing thousands of teenagers running around with black wigs carrying record albums with four strange-looking guys on the cover, was a sight I have never forgotten. And when I got home that night, my mother was feeding my baby sister Haley and the news came on. "Who are the Beatles?" I remember asking my mom. I would never ask that question again. I was at the airport the day they arrived on PanAm flight 101. And for three successive Sundays after that, we sat and ate Chinese food as we did every Sunday, and waited until Ed Sullivan announced them. I loved Paul but my mother said I should love Ringo because he was so ugly and nobody else would love him. And this week at the Grammys I saw my idol again, now 63, dropping jowls and all, and now with the title "Sir" attached to his name. And I remembered the eight-and-a-half year old that I was then. I didn't know at the time what a great day that was and how it would pave the way for music history, for my love of everything British, and even for an "affair" with another group a year later by the name of Herman's Hermits.
What does this have to do with ALS? Everything!! I think about legacies. I am trying to leave a legacy. Two of the Beatles are gone now. Paul and Ringo continue. I want to start something and I do not want to be forgotten. Certain dates change our lives. Another date, one that will go down in the infamy of my days, is January 27,2004 when I officially got my ALS diagnosis over the phone. Life is simpler now. Every day I only eat one meal by mouth. Breakfast is drunk; dinner goes through a tube to my belly. Food shopping is simpler. I can't just pick up and drive to Manhattan to escape whenever I want. Especially in winter, I can't just go out! I am inside with myself-- something I always avoided but now can't.
I relish the antics of my bunny, the changes in my nieces and nephews, my books, and everything simple. I am cleaning out my apartment and realize how much stuff I have held onto through the years and things I spent money on, that I never needed. Hobbies and pursuits and other obsessions I indulged in, spent money on, just to escape staying and looking at, and dealing with, me. Life has now given me no choice. I am not around other people most of the time, only me
Thursday, February 2, 2006 5:24 PM CST
ALS CLINIC VISIT
the topics of concern were my extreme fatigue and my need for more care because i exhaust myself just getting in and out of bed, and i also feel my safety is compromised after the aide leaves.
Here is a synopsis:
Respiratory: one breathing test is very low, but another, which measures my inspiratory pressure, was actually within normal parameters. Later, Dr. Scelsa, the neuro, said it showed that my diaphragm was still strong. He indicated that this was very encouraging news.
Anyway, the RT wants me to use the bi-pap ventilator during the day for short intervals especially when i nap. She also wants me to use the cough assist machine for 5 rounds of 5 breaths each!!
Dr. Scelsa: the neuro-- he said my muscle strength has not diminished since my last visit Nov 1, but the spasticity and spasms are still bad. So he added another medication-- zanaflex
He also ordered blood taken so he can have my liver function checked. Rilutek taxes the liver.
OT and PT :Acknowledged that it is getting increasingly dangerous for me to be alone and wants to push for 2 twelve hour shifts. They want me to walk around the apartment as little as possible and to use the wheelchair inside as much as possible.
Dietary and Nutrition: OKAY I gained ten pounds since my last visit!! Everybody loses weight with ALS and I gained!! so I am on a special diet.. First, no more deliveries from God's Love. their meals are very caloric. whenever possible, two cans of food throught the tube for one meal and soup or hummous or smoothie or something soft for the other meal.. Still Instant Breakfast for breakfast. I only need 1200 calories a day because of my low activity.
Social Worker: she is putting through the paperwork requesting 24-hour care -- two hours of 12 hours a day. She is very confident that she can write it up to justify the change.
We actually went home and then drove to the city again later for the MDA support group, which, as usual was wonderful. We had a speaker from a hospice agency.
I have been working with both aides to clean out the closets and kitchen cabinets and put things away from the living room. I hope to rearrange the furniture to create a sleeping alcove with a screen or partition.
Watched "Cinderella Man" on DVD this weekend with Louise
Louise's friend Lawry started chemo therapy this week for his cancer. He feels weak as a result and I wish him well.
The Walk to D'Feet ALS website is up and running. Deb and I decided to rename the team " Fern's Fighters" and it is already set up for walkers to register, and I have already received a donation from Donna Schletter! WOW!!!!!
Sunday, January 22, 2006 12:16 AM CST
So Debbie and Andrew take dad's dog Cassie on the weekends and will adopt her as soon as they get another apartment together.. today she has a playdate with a lhasa apso named Max. So far this is working out wonderfully!!
She is becoming quite the little bossy bunny lately! my two aides Ellita and Lynette, feed her, so now when she is ready for her evening meal, she bangs her bowl and looks at whichever one is here. Lynette has developed a good rapport with her. The other day I came out of the shower and I heard Lynette speaking in a high-pitched baby voice. When i came out of the bathroom, Lynette was talking to Hannah and Hannah was sitting at her feet just looking up at her. It was so sweet!!
I have my next appointment on Monday January 30th. Some nurse from the Visiting Nurses came in and was concerned about my swollen feet. She said "you need to be on water pills!" But she called Dr. Scelsa who said "no"! He was probably thinking "who is this woman who thinks she knows about ALS?"
I have been putting time aside each day to listen to the tapes that I receive from the Andrew Heiskell Library for the blind and disabled. I also make sure I work on the Sunday Times crossword puzzle and keep my bills straight. Louise comes over once a week and we plug away at all the bills I have to submit to NYSARC, and I do believe that I am finally in a rhythm, which is so important since it takes them two weeks for them to actually send out the check.
COMMISSION ON HUMAN RIGHTS
They are really following up on the building's promises to replace the side door with an automatic entrance. The co-op is really dragging their heels!
Sunday, January 15, 2006 12:58 AM CST
There is an ad for a new movie with Queen Latifah, called "Last Holiday" Apparently the premise for this movie is that she is told she has only three weeks left to live, so she does everything. Sky diving, shopping in expensive stores, etc. There is only one problem with this: I have never known anyone with less than a month left, who has been in any condition to do all these things. Certainly I am assuming that I have at least three weeks left, and I am very limited. But there is so much I would love to do: go to Europe again, eat at fancy restaurants, see Broadway shows I have never seen, like "Rent"..... oh well, even going out to see a movie is a chore.
I am losing my patience with people who think I am not entitled to some of the same courtesies as other people. Things they would not do with their other friends they think nothing of doing with me.
now don't get me wrong -- there are certain liberties with family and close friends, For instance I got a wonderful surprise visit from my dad and Tyler. They totally understood when I excused myself to go into the shower. Especially Tyler, I love to see his face anytime. He and the family and friends who are used to being here can stop in at 3am for all I care. But when my doorbell rang recently at 7:30 pm and it was someone I see on average 3-4 times a year, who walks in and says "hi" and proceeds to sit in my chair with nothing remotely resembling "sorry to drop in on you like this", I draw the line. The reason for the pop-in: " I was passing by and saw a spot in front "
Of course this is the only person in the universe with no cell phone so no phone call from the car and no inquiry as to whether this was a good time or not for a visit!!
And the people who finish my sentences (often incorrectly, which is super annoying).... do they do this with other people?
The more my friends and family are around me, the more easily they become familiar with my needs, especially the need for privacy at times, and other courtesies.
I feel, when people come by, that I should be offering a cup of tea or coffee and a piece of cake, but I cannot even get it for myself. Bless those (you know who you are) who come in and make some tea for both of us, or even pitch in to change hannah's food or litter pan.
I have been taking regular naps during the day and starting to listen to the talking books I get mailed to me free from the library. I am thinking of some new fundraising strategies for this year's walk, which is on Sept 30!! And welcoming the friends and family who do come, even with a few minutes' notice!! And especially the ones who get me outside. It becomes too easy to just sit in and never get fresh air.
Wednesday, January 4, 2006 2:52 PM CST
HAPPY NEW YEAR
My new year's eve get-together was great.. just the level of excitement i wanted.. they got me up four steps with the wheelchair and the house was beautiful. Lots of bunny talk and Nancy had a beautiful spread of Italian food !!!!!
Ironic that during my healthier days i almost never had anything nice to do on new year's eve and this year i get an invitation.. go figure.. every year i wonder if it is my last so it was perfect to have a good time!! An evening with terrific women and bunny moms beat anything else i could have done!!
WALK TO D'FEET ALS 2006
It is on a Saturday this year ----- September 30!!
I am hoping to get a bigger team this year and to figure out a way to fund-raise long before the walk!!
MY FEELINGS LATELY
i am trying to up the momentum on my reading. I remember having a pretty lonely childhood and reading always was my salvation. I received my first tapes from the Andrew Heiskell Library for the Blind and Disabled "Bodega Dreams" and "the Fountainhead" by Ayn Rand. In addition, Louise lent me "Tales From the Bed" by Jenifer Estess, who died of ALS and, with her sisters, founded Project ALS. Also, Jane gave me as a holiday present "700 Sundays" by Billy Crystal (who went to my high school) and I am almost finished with the Jenifer Estess book. I can painfully relate to everything she talks about, but envy her the opportunity to work on something worthwhile from her bed, and with the help of celebrities too!! But she seemed to progress really quickly and lost use of her hands early.
i find myself fearful of losing function and worried about what is going to happen next.. getting in and out of bed is extremely difficult, even with the rails and I am alone at night. I get up a few times a night to go to the bathroom.
I also feel sad that I cannot go out easily in this cold weather. I felt sad when i could not go into the building lobby for the annual christmas party and had to have an aide go down the few steps to get me food. I feel angry that people find it necessary to finish my sentences because they are too impatient to wait for me to type out my sentence on my mercury. Would they do this to their able-speaking friends? Would you go to the house of a healthy friend and check your voice mail literally every fifteen minutes? And why is it okay for my building neighbors to look the other way when i get out of the elevator, when just a year ago they didn't hesitate to talk my ear off with complaints because i was a board member?
I am still the same person inside, just with special needs!!
Wednesday, December 28, 2005 11:56 AM CST
First of all my new year's resolution is to update my journal more often!!
Secondly, i actually got an invite to a get-together on new years eve --at Nancy Schreiber's house in Great Neck complete with other bunny parents. my challenge will be getting there. i would need someone to pick me up and take me home with my manual wheelchair. the party guests are trying to work it out..
could not have been better!!!! Claude picked me up and took me to his and Haley's and later on we had my dad, claude's brother Gino and his wife Donna, their kids Joey and Regina, and Claude's sister Laura and her son Greg. Later on we were joined by my sister's friend Marsha, her husband Jeff and their two daughters Marni and Dari, who is rianna's friend.
Since my Nikon Coolpix 2200 was stolen, i felt badly that i didn't get any pictures but i am going to put some more items on ebay and save up to get another one. i am really feeling the loss and am dying to take some digital photos!!
i got some really great gifts too!!!!
i am having the urge to make some more art and crafts items
the respiratory therapist from Millennium Respiratory came and installed a humidifier on my bi-pap ..... felt a lot less drying .
this is a challenge at night!! it is becoming more and more difficult to get in and out of bed. i have to avoid kicking poor Hannah and pull myself up by the side rails of the hospital bed and, by the time i do this, i am totally exhausted. when the aide is here, she helps me but at night i have no aide!! needless to say i never get to the toilet on time,and i am talking about 2-3 times a night. never thought i would have to join the Depends crowd, but here i am!! oh well!!!!
and I cannot cover myself anymore.. so I wear socks to warm my feet but I miss the feeling of a comforter around my body. The truth is that I cannot get it around myself and then I would get all tangled when I get out of bed. I wish I had someone to put the covers on and take them off. oh the perils of being a single woman.....sigh
watch what you wish for. i used to say that i wished i didn't love eating so much. Well the act of eating is getting more exhausting and the tube feedings followed by smoothie or pudding desserts by mouth are going to be the order of the day before too long!!! it is just so much easier! those of you who have known me through the years, don't faint!!! Eating all but the softest food is becoming a hassle!!!!!
Monday, December 19, 2005 8:36 AM CST
NICE SURPRISE YESTERDAY
Tyler and Dad stopped by yesterday -- total surprise!! they ordered in a pizza and Louise stopped by and had a slice too. At 4 pm, Warren Schiffer came by and brought me a souvenir from Japan and one of his ginger veggie smoothies yum!!
I stopped by the building Christmas party in my inaccessible lobby. Well I enjoyed it from the top of the steps and some of the neighbors came up to speak to me. My aide got me my food so it worked out well!!
ADVENTURES ON A CITY BUS
So what do you do when your overgrown two-toned hair has gotten out of control and you have no time to call access-a-ride? You try the lift on the city bus!!
well it is a lot to get used to.. on my first trip, the lift was in the back and i did not know i had to go on backwards!! the driver was pretty patient and, considering the fact that he kept the other passengers waiting by the closed front door while he found an ice-free area to stop the bus, there was a lot of tolerance.
But coming home!! The lift was in the front and the wheelchair securement area a few rows back. I took a few toes with me, and heard some unkind comments from fellow passengers, all elderly, about how i should have taken access-a-ride and how i couldn't even speak and should stay inside, and how they are so sick and nobody knows how tough it is for them to live. Yeah I have no idea and I would love to live long enough to complain about being old!!
I AM OFF TO BUY A HOUSE!!
I received a check from the Board of Education in the amount of $9.60 (yes the decimal point is in the right place, and there are the right number of zeroes) for "home down payment assistance"
So I am trying to find a house which I can use this down payment for. So far I can buy a bird house, a dog house or a bunny house!!
PRAY THAT THE TWU AND THE MTA COME TO AN AGREEMENT AND WE CAN AVERT A TRANSIT STRIKE!!!!!
Wednesday, December 7, 2005 5:09 PM CST
FIRST THE GOOD NEWS
i got my medicaid card. It came in an envelope with an Albany address but nothing on the envelope to indicate that it had anything to do with Medicaid! With all the junk mail I get this time of the year, I am glad I opened it! And the card says "NYS Benefits" so I asked my aide if it was a Medicaid card and she said indeed it was. When I sent her to the pharmacy to pick up medication, I found out I need all new updated prescriptions. So an email to the ALS clinic and the prescriptions are on their way to me. And I promptly sent emails to all the medical companies that have been charging me the 20% on their equipment to let them know that now Medicaid will be paying that. And I sent off an email to Helen Hayes to let them know that they can now re-submit my paperwork for the motorized wheelchair
my week would not have been complete without some of those. So, the loaner wheelchair started acting a little crazy and i didn't want to use it until i had someone over to look it over. This happened on Thursday night and the mechanic came on Monday so I felt imprisoned all weekend, especially since the only visit i received this weekend was from a graduate student at Columbia who is doing a paper on ALS patients.
I must say that the interview was fun and Christiana was very nice . her uncle died of ALS a few years ago so we had a lot to share. She will come back one more time to complete her paper. I look forward to it, since she was very pleasant.
By the way, the wheelchair is okay. We figured out that I must have accidentally flipped the sensitive switch to recline the wheelchair, and then flipped it again to make it go forward. i got some valuable tips on how to avoid this. I was relieved that I didn't have to find room for that huge scooter again!!
MOUNT FOR SPEAKING MACHINE
This was installed yesterday on my wheelchair, so now I can have my Mercury machine on the front of the wheelchair when I need it..
FEEDING TUBE SITE
Very sore!! and there is an itchy rash all around it!!! Is it an allergy to something or an infection? And what do I do? I have an appointment with Dr. Cohen tomorrow. More Access-a-Ride adventures in the freezing cold!!!!!!
Monday, November 28, 2005 9:09 AM CST
sadly the day I entered my last journal I found $20 in cash missing after Doris' shift. i reported it to the agency and of course they said i couldn't prove it.. how can i? So I told them I don't want Doris back in my home and she is gone and I am out cash I desperately needed. I suspect she did it while I was in the bathroom, knowing that I take a long time in there and can't get out fast enough to catch her..
lesson to be learned : HIDE ALL CASH
I give thanks to a wonderful day spent with Haley, Claude, Dad, Tyler, Rianna and Jenna... wonderful food, nonstop entertainment from those talented kids and a relaxing no-pressure day of enjoying the family!!
Nice surprise from Claude the sunday before Thanksgiving.. He stopped by with the kids and yogurt smoothies.. !!
Jane came the same day and brought the movie "Spellbound", a documentary about the National Spelling Bee. This past weekend on Friday Debbie came by to visit me and Hannah and brought me goodies. She also took my hand vac off my hands...YAY
Saturday, Warren came by for another great visit. And Sunday, Flo and then Louise.
Tonight I am going to the MDA support group with Louise and tomorrow Maddy is going to help me clean out my closets and underbed boxes of old but good clothing that I cannot wear anymore. In turn, she is going to bring it to a charity in Harlem that helps people dress for jobs and start again after coming out of shelters. I also have some kitchen stuff to give her. She will be a liaison for Freecycle. Whatever I cannot sell on ebay or give to friends, she will give away on Freecycle. Time for me to pay it forward and give back. I have been blessed by peoples' generosity!!
I am grateful today to the people who stop by and visit and run errands and get me out to Starbucks, the clinics, support groups, and other appointments!! I am grateful for the people that take time out of their busy lives to put a little sunshine in mine!!!
Saturday, November 19, 2005 7:16 AM CST
just some words of caution for anyone in my position or anyone who could possibly be in my position at any point in time -- which is anyone.
First -- home health aides. I know they are poorly paid and it is a crappy job, but i compensate by not asking for anything non-essential and letting them watch tv all day, even when I am trying to take a nap. The agency and visiting nurses and the physical therapists at the clinic will insist that the aides are supposed to be there for your safety and to do your range of motion exercises with you. But take it from me -- it is like pulling teeth to get them to do your exercises with you. And even when you do get them to agree, they do them all wrong, despite the training they have gotten from the visiting PTs.. and you are told that if you have a problem with an aide, you should call the supervisor. Well, you have to be careful with this, lest it start to look as YOU, the patient, is the problem. Ellita is really good at keeping her eye on me when i am transferring and jumping up to help me out. But Doris, my new aide, and Oomah before her, could sit from the comfortable club chair and watch me struggle and not move until i yell "I need help" to which Doris replies "what do you want?" I asked for Oomah to be removed from my case because I was sick of her lauging at me when she didn't understand. She even humiliated me in CVS when she laughed at me and turned to the other people in the line, giggled, and pointed at me and rolled her eyes as if to say "look at this crazy woman I have to take care of"
But I am afraid I have gone from the frying pan into the fire with Doris, who substituted one day and really made a good impression. But she has been with me a few weeks now and gets comfortable in her chair and it is frustrating to convince her that she must straighten out the mat in the bathroom to prevent falls, or put the chairs in all the time to make room for me and my wheelchair in that small apartment.
And the second warning is about the "catch 22" of the pooled income trust -- in my case NYSARC!! i am getting to the point where I am very frightened because I have had to pay the 20% co-pay on all my durable medical equipment (DMEs) because NYSARC won't pay the expenses that medicaid is supposed to pay, even though it has been 5 months since submitting my medicaid application and still no medicaid number. I am being billed for 20% of my hospital bed rental, 2 respiratory machines
tube food, and other medical expenses, not to mention all my medications out-of-pocket!! Since my $670 a month won't cover these bills plus certain bills that NYSARC will not pay because they reflect old debt and not current charges, i have been delinquent on a lot of my bills, resulting in some threatening collection letters and phone calls.. Not to mention, of course, that my credit is virtually ruined! As someone who has had A+ credit all her life, this is incredibly stressful and even frightening for me.
I have to have the pooled-income trust in order to be eligible for medicaid, but medicaid is opposed to the pooled-income trusts, so they deliberately take a long time approving applications such as mine. So, I am saddled with insurmountable bills until medicaid gets approved!! I feel that I will never be able to get out from under this mess! Now, I am going to get a bunch of emails telling me that this is not fair!!!! Yes it is totally unfair!!
Tuesday, November 15, 2005 9:04 AM CST
well, i am noticing certain things getting harder to do and other modifications i have to make, not the least of which is throwing certain things out that are just taking up room, without regard to what they will fetch on ebay!!
i am finding it harder to go into my kitchen. i can no longer stand on my own without fear of falling. Ever try to carry a container or a dish in your hand while holding on to a grab bar with both hands? i have to have my aides leave certain things closer at hand when they leave. it is getting harder and harder to manage at night after they leave. i stay in the wheelchair as long as possible before getting out and using the walker!! i have to conserve energy as much as possible and stay as safe as i can!! i am beginning to appreciate having an aide and not as picky about my privacy issues anymore. i can read while they watch tv and i can even sleep with the light on and the tv on low.
warren schiffer came on sunday and brought me a great tempurpedic pillow which feels great under my neck. he also brought another one of his vegetable-ginger smoothies.. yum!!
on saturday night jane came over with a DVD about the italian-jewish artist modigliani. i love movies about artists' lives. this one was slow-moving but good. after my afternoon visit, i did not get to nap and so fell asleep at times during the movie.
watch out!! irwin cohen (dad) is online and sent me his first email.. at least we can communicate better now!! and i don't have to bug him about putting in his hearing aids!!
i am researching the medicare drug plans and it is daunting, but i have narrowed it down to about 3-4 plans. i have had to discontinue taking rilutek because it is just so expensive, even from canada, and i have money issues. i can't use my amex card until i pay off the balance. oy.. so i can only shop using the debit. as of this writing, i only have about $100 to use until dec 14, so i have to stick to as much God's Love food or the tube food which is sitting in cans in my foyer. it will be a sobering experience!!
my muscles are stiffer but dr scelsa says if he raises my baclofen any more, i will be zonked out!! ordered my first book on tape from the andrew heiskel library for the blind and disabled -- middlesex
Thursday, November 10, 2005 8:04 AM CST
BIG NEWS: WHEELCHAIR AND HANNAH'S HOSPITAL VISIT
Saturday: a great visit from Jen and Judy, my friends from my volunteer work at Broadway Cares. We went to Starbucks and I had a delicious mint frappucino. It was actually warm enough to be a "frappucino day" In the evening Louise came over and asked if I wanted to go -- guess where-- Starbucks!! But when she heard that I had been there, we made a pot of tea at home and went through some of my stuff that I needed to throw out to make room.
Sunday night : I noticed Hannah was not exactly herself. So Monday I got in touch with my Bunny Brigade and Nancy Schreiber came over and took Hannah to see Doc Saver at Catnip and Carrots. She hadn't eaten her morning greens and then jumped and fell off her ramp. Diagnosis : dehydration leading into gut stasis. Well she stayed in the hospital for two nights because Doc wanted to observe and give her baby mylicon and reglan for the stasis. Flashbacks to Penny but as of this writing, Hannah is back home. Mary Ann and Donna gave her medicine last night and this morning Hannah ate her greens and even jumped into bed with me last night!! MaryAnn is coming this morning and Debra tonight to give her today's meds.
Tuesday: the motorized wheelchair came and the scooter went bye bye. I can use the wheelchair around the apt (although it is a little tight). I need to make room so I will be offering many things for giveaway -- my own private freecycle list. If you want to be on my list send me an email to firstname.lastname@example.org, and i will periodically send you emails when I have something to give away. The only thing is that you must come to pick it up -- I can't ship.. I have kitchen things, small appliances, craft supplies and lots of other things that are new or in good condition that I don't need anymore or can't use because of my condition..
Say a prayer that Hannah gets continually better. After her, there can't be another bunny. I won't be able to give good care to a pet after this. Tuesday is the ALS Association support group in Union Square and this weekend Saturday Jane is coming over to watch a movie, probably purchased through pay-per-view.
Wednesday, November 2, 2005 1:36 PM CST
Wednesday, November 2, 2005 7:37 AM CST
on Saturday I had a wonderful visit from Warren Schiffer, whose wife Toni Diamond passed away from ALS earlier this year. He is one of the co-founders of Wings Over Wall Street, a fundraiser for the ALS division of the Muscular Dystrophy Association. It was a great visit and he talked a lot about his "journey" with his wife. He is a flight attendant for United Airlines, and so was his wife. Together they traveled the world and after she got sick, he took a voluntary furlough and became her caregiver.
On Sunday, I went to the Guggenheim Museum with Jane Greenberg and Ellita my aide. Despite problems coming home with Access-a-Ride, I enjoyed doing one of the many things I want to do before I can no longer do them. Some of my friends have promised to try to do these things with me. I want to be in Manhattan as much as possible. I would still like to take a trip, but I don't know if that will be possible, or if anyone will be willing to join me in that effort. I think of Adele Zinberg from my support group who goes all over the world in her wheelchair with her mom. She is more advanced than I in this illness, having had it now for 8 years.
In the morning I went with Louise in her car to the ALS clinic. It was time for my quarterly visit. We drove in because of our afternoon appointment at the Helen Hayes Hospital in West Haverstraw to get fitted for my loaner wheelchair.
Anyway, here is a synopsis of my clinic visit:
respiratory: very productive --I told Betsy about my dissatisfaction with Low Respiratory and she is switching me to Millennium Respiratory. As of this writing they have already called me and they are coming to install their equipment today at 4pm.
She is also switching me to a nasal mask instead of the full face mask I have now. This will give me greater ability to read and watch tv, and more comfort.
Physical Therapy: I am to walk around as little as possible
once I get the wheelchair. Also he wants me to stand up straight and stretch my back every 30 minutes.
Nutritionist: She is pleased I am keeping up the weight. No need to use the tube if I am still able to nourish myself by mouth.
Doctor Scelsa: gave me my flu shot
raised my paxil by 10mg a day to 30 mg daily
looked at my peg tube site and told me to apply bacitracin to the irritation
good news: only my speech seems to have deteriorated. Muscle
strength is virtually unchanged since my last visit. Spasticity (stiffness) still continues to be my problem.
HELEN HAYES HOSPITAL
After my clinic visit we went to Helen Hayes to adjust my loaner wheelchair which is almost identical to my permanent one, which will come after the medicaid is approved. The only thing it is missing is the seat elevator. I will be so happy to get rid of that scooter!!!!!
HANNAH AND THE RAMP
well the ramp is set up and Hannah figured out how to use it immediately!! the problem is that she shows me she loves me in a bunny sort of way --by peeing on my comforter. So last night I laid down a towel and she peed on that. also a bit on the comforter when the towel moved. But I can deal with that. Unfortunately my aide is having a problem with it and I don't want to lose her..maybe those disposable diaper changing pads? I will keep trying for solutions,as is my nature!!!!!
Thursday, October 27, 2005 8:43 AM CDT
it has been a while so there is a lot of news..
first of all no medicaid card yet.. the reason seems to be this:
when the NYSARC trust came into being as a way for me to shelter my surplus, medicaid was dead against it. it is obvious why: i get a social security check of way above the $670 per month that medicaid allows me to keep. Before NYSARC, i would just pay medicaid anything above that $670 and live on $670 a month!! very simple right? and who can live on $670 a month? that would make it necessary to move in with someone or go into a state nursing home. Good result for someone like me who worked like a dog all her life and contributed to society. So medicaid does not like NYSARC, because that allows me to submit my surplus and pay my bills. Therefore, they have developed a special unit just to handle NYSARC applications and they hold these up long enough to aggravate people like me. All this supports my opinion that, in this country, you either have to be very poor or very rich to get adequate health care.. once again, the hard-working middle class gets screwed!!
last weekend: on saturday evening, jane came over for a while. it was a nice visit, as always.
on sunday i went with debra goldstein and her mom to the annual Rabbit Care Conference in New Rochelle. I look forward to this every year, and i am grateful to deb for bringing me, wheelchair and all.. and here is the best part:
DEBRA BOUGHT A CUSTOM-MADE RAMP FOR HANNAH
so she can get up in the bed with me!!!!!
it is gorgeous.. beautiful wood and nicely carpeted!! since we have to move some furniture, she is coming over tonight to assist and we will set it up.. a few papaya tablets to lure her and i am sure hannah will learn to use it in no time flat!!!!!
i had a visit from a nurse practitioner from Visiting nurses hospice. it was a great visit. technically, a patient is supposed to have a prognosis of less than six months to live, but with the unpredictability of ALS, my doctor may approve visits from hospice. they are wonderful and provide not only medical care but also counseling and spiritual care. And here is the best part: they are opening up a home in manhattan where i can go later on. not my favorite way of realizing my lifelong dream of living in manhattan, but hey......
as the hospice services unfold, i will write more about it here.
more good news:
louise is taking me to helen hayes after my clinic appt on monday . they have a loaner wheelchair and i have to get fitted. it may even be possible to mount my mercury speech machine to it while waiting for my permanent one to come - when the medicaid is approved..
Eugene Bonos from my Herman's Hermits list sent me a whole bunch of CDs of peter noone concerts and pictures. anyone who knows me from way back knows what a herman's hermits fan i used to be, and what a big part they played in my growing up.
Well my fingers are really stiffening up so until next time...
Tuesday, October 18, 2005 8:59 AM CDT
A VERY LOVING CARING WEEKEND!!
i had an awesome weekend.
Saturday i got a semi-surprise visit -- she emailed me that morning-- from Sue Chichin. i met sue on the living with als yahoo group. she was caregiver to her husband victor who was diagnosed right before me. we kept in touch regularly and became good friends online. well unfortunately victor passed away recently and sue had all this canned tube food she wanted to give to me. her neighbor said she would bring it to me on her way to visit her sister in brooklyn. although sue was not confident about driving to queens from union, new jersey, she really wanted to meet me. so i emailed her some directions and she came over in late morning on saturday with a luggage cart carrying three boxes of feeding tube formula and a bunch of beautiful flowers. it was a great visit and i love her as a person. she wishes i lived in her neighborhood. she said her neighbors would all take care of me the way they all took care of victor. she was shocked when i told her that i had a building of 96 apartments and only one neighbor bothers to look in on me. louise said she would drive me out to sue's house after her play is over. i look forward to seeing her again!!
sunday.. this is an example of "when it rains, it pours"..literally and figuratively.. it has been torrentially raining for several days -- more on haley's flooded house later. sunday was the first decent day in a long time. at about 2, jane greenberg came over and shortly thereafter Flo Farrat came over with some smoothies from Baskin Robbins and some chocolate milk. we went outside for a while and had a great visit!! it was so nice to have friends over!! then at about 7, louise came over and we went for a slice of pizza and starbucks. she helped me do the nysarc deposit. you know it helps to have someone fill out the forms. my american express bill is really late. they have suspended charging privileges until it is paid. i am so slow to get these out to nysarc because of all the paperwork involved and all the receipts i have to fax over .. anyway it was a social weekend.. if felt very un-isolated and good.
there is a loaner motorized chair being shipped to helen hayes for me and i have to get up there to get fitted. louise is hoping to get a day off to take me up there. this is not an easy thing to ask people to do -- helen hayes is in west haverstraw in rockland county and it is basically a half day affair. louise has taken off two days already to take me up there. but it is a lovely ride and now the fall leaves will look beautiful. i also have to get some functions turned on in my mercury speaking machine so i need to try to see debra zeitlin on the same day.
i had my annual mammogram and visit to Dr. Schnabel at ny presbyterian yesterday . they did the mammo while i was seated in the chair, and everything turned out okay.. thank god, can you imagine me going through a mastectomy and/or chemotherapy and radiation? it would not be easy!!
and now for haley's flooding!! it was so bad it was on the 10 o'clock news.. the whole garage and basement totally flooded.and with claude in germany for a sleep conference she was basically on her own. i felt totally helpless that i could not even go there and keep the kids occupied while she pumped away. just another one of my frustrations -- i cannot be there for anyone else. i feel so selfish!!!
Monday, October 10, 2005 9:19 AM CDT
happy columbus day
haley went to a support group on long island last sunday and she said they talked about medicare part d which is the drug coverage, and it looks like i may need that if medicaid doesn't kick in by january.. i am almost losing hope that i will ever get medicaid and that i will ever get my wheelchair. in the meantime, it is getting harder and harder to walk around the apartment with the walker. i get exhausted just walking from my bed to the kitchen.
finally we had a really nice nurse -- not my regular one-- come by and show me how to do a drip feeding.. it is incredibly easy and i can sit up and do whatever i need to do while i am being fed.. in the meantime, i ordered the chopped menu from god's love we deliver and it is surprisingly unpalatable. i am better off eating hummus and other soft foods.
speaking of hummus, jane greenberg came over yesterday afternoon and brought hummus, tahini, and middle eastern food and we went for a walk outside. i have not been outside since last week and i forgot how much i love to be outside in the autumn. the leaves are so beautiful and the air is so crisp. i only go out with the aides when i can convince them that i need to go out on an errand and so i depend on friends to come over to go out with me. everyone is so busy with their lives and it is difficult for them to find a couple of hours in their day to take a walk. i sometimes think it is a curse that i was hit with this disease while i am comparatively young because my contemporaries are so busy with work, boyfriends, careers, schooling and small kids. the irony is that they have the energy but not the time. there are things the aides do not do, like help me arrange my apartment. and unfortunately the aides are not people i enjoy spending time with. louise is coming today to help me organize my papers and submit my bills to nysarc, something i am finding it more and more difficult to do. i was supposed to have another friend come over to visit today but we had no contact in the last few days and she has no internet access at home. maybe she will call and speak to my aide, but a lot of people have promised to come in the last few weeks and crapped out. i keep thinking how horrible it would be in a nursing home, but i feel sometimes like i am anyway, just me and an aide. i have a lot to think about, and maybe i will try to look at extended care facilities and see if i can pick out a nice one, before someone has to place me in one in an emergency..
Saturday, October 1, 2005 2:04 PM CDT
MY PEG TUBE
Well I am home with my PEG feeding tube. I went into the hospital on Wednesday with Ellita my aide and went into surgery at about 12:30. I was awake the entire time and I had a plastic thing in my mouth pressing against my lips to hold my mouth open. Well now I have a big fat lip . All I wanted in the hospital was my trusty chap-stick.
The staff was nice and I was in a monitored unit so they were right near my bed, but it was lonely and I couldn't speak to be understood, so I spent time writing and yelling. Louise came to see me on Wednesday night and I know Maddy tried but they couldn't find me in the computer. I don't know how Louise managed to find me but she did.I didn't get a bed until 7:00 pm so I laid in recovery until then from about 1:30. The Jewish chaplain came to see me but I lay there as each person either left with a family member or went to a room. I was the last one there.
Anyway my back was killing me. I still don't know why, but it didn't calm down until I got into my own bed Thursday night. I kept telling the nurses my back hurt and the pain killers I had helped my belly but not the back!! Oh well.
On Thursday Lisa came to meet me at 6pm and the ambulette came at 6:45. They didn't tell us they would have to stop to pick up somebody at Sloane Kettering and to buy potato chips .
So we didn't get home until 8:20 and I didn't know that Louise had come by to feed Hannah so I was afraid she was starving. And poor Lisa had to go feed and walk her dogs and couldn't find her keys, which turned out to be in my bag!! She was great enough to come back down and then Louise came over and got me ready for bed at 9:00..What a day!!! My dad was supposed to meet me in Queens but we all thought I would be home in the afternoon.
Where am I now? Totally overwhelmed!!! I can't seem to flush out this tube without getting smelly food residue all over the floor so I emptied it in the shower this morning and that seemed to work okay!! And the aides are not permitted to help with feeding tubes. So what do I do? I am petrified that I will not be able to get this right and I have no one who can help me. And what happens if I lose use of my hands? Is a nursing home my only option? Someone help me here .. there are so many questions!!
Monday, September 26, 2005 8:25 AM CDT
THE WALK TO D'FEET ALS
Yesterday was the walk to d'feet ALS in Eisenhower Park on Long Island.. What an uplifting experience!!!
The team (not in any special order)
Haley, Claude, Tyler, Rianna, Jenna, Louise, Lauren, Lawry, Debbie Goldstein and her parents Mr. and Mrs Hirsch, Donna, Gino, Regina, and Joe Albertario, Carol Creamer and her nieces Erin, Jenn, and Kate Gerrato, Marie Scafidi and Aisha, her adopted daughter, Florence Farrat, Michelle Auletta and her friends Susan O'Conner and Emma Pearce and one other friend Monica (please forgive me if I got the name wrong),and Maddy deLeon who was at the advocacy booth getting people to sign letters to their legislators.
Everyone was so awesome!! The Albertarios rigged up a scary foot that they pinned to the back of me! And they made a beautiful team sign. Florence also made a team banner with her computer. And after the walk, Haley and Claude invited everyone to their house for lunch, which was outrageous!! Dad was at the house holding fort while the food arrived. Jenna gave tours of the house, and Rianna gave a gymnastic performance that dazzled!! Debra Hecht and Jane Greenberg came to join us, and so did Debbie Goldstein's parents, who were as special as she is..
It was so great of Haley and Claude to make a nice day for everyone out of it all!!They really made it so special .. thank you to the family..
pictures to come!!
Tonight I go to the support group at MDA with Louise and Wednesday I go for surgery.I have to pull myself together to submit my bills to NYSARC today. I have been so tired and depressed lately that I can't seem to do these things, but I must; also, filling out the disbursement forms and sending the faxes is tiring for me. My hands get exhausted from trying to write..
Wednesday, September 21, 2005 8:00 AM CDT
First of all, everyone, please be reminded that the guestbook is public. Anything you say about someone could be read by that person. So, anything you feel should be private, send to me by email email@example.com.. thanks.. i don't want the guestbook to get like some of the message boards and chatrooms. I don't want arguing and fighting going on.
I have been down in the dumps lately. The delay in medicaid is further delaying my wheelchair and even the trip to the bathroom or from my computer to the table to eat lunch, has been tiring. I really need that wheelchair to conserve energy.
And it is more evidence of my powerlessness.
The Walk is this Sunday. I have about 15 people on Team Fern and lots of donations. But what is really uplifting is the chance to see friends and relatives support me and my cause.
And my PEG feeding tube surgery is a week from today at Beth Israel. I spoke to Eileen at the ALS clinic and expressed my fear and being alone with my immobility and my speech problems. She suggested putting a sign up above my bed explaining that I have ALS and cannot speak but have normal intelligence and hearing. I will bring my Magna-doodle with me, but not my Mercury because I don't want it to get stolen. I also have to bring my bi-pap and my medications. I will go on access-a-ride with my aide, and Lisa will take off work early and meet me upon my discharge and ride home with me. Eileen says I may be able to get an ambulette to go home. But Lisa will still have to wheel me into the building. They are concerned because I won't have home care until the next day, but I can have local people look in on me like Louise, Lisa and Debra. Aside from the pain, I don't see any real complications. Everyone on my Living with ALS list says it is not too bad. The nutritionist at the ALS clinic gave me a plan for feeding with recommended formula and I think I will switch to pureed food from God's Love We Deliver for eating by mouth.
On Sunday I went with my aide to an Open House for the Initiative for Women with Disabilities at the Hospital for Joint Diseases. I signed up for two classes-- yoga and art .. I went to yoga yesterday, and it was so relaxing that I began to nod off. I go to art on Friday.
At the support group last night I learned of the death of two of the patients whose family members who attend the group. Rich, whose ex-wife (and best friend) Andrea attends, died after 8.5 years with the disease. And Seth, whose Uncle Brian went to Cape Cod every weekend to help care for him, also died. Rich died in his sleep, with no warning that anything was amiss. I hope to go the same way.
I have to admit that I go back and forth with this feeding tube thing. I wondered if I am doing the right thing trying to prolong this life. I don't have a whole lot to look forward to and for someone who loves to socialize, it is getting harder to convince anyone to hang out with someone who has to use a wheelchair to move around and a machine to talk. And I cannot just get up and go as I used to. But the people at the ALS clinic tell me that starvation is a lousy way to go and that I will feel better when I can hydrate myself properly. So I will trust them on that.
Thursday, September 15, 2005 7:15 AM CDT
I went to Dr Cohen the gastroenterologist, Dr. Cohen, on Monday, to set up the surgery for my feeding tube.
Since eating by mouth is becoming more difficult, they need to put a tube above my navel through which I can take nutrition. I can still take food by mouth, but it will be less of a burden on me, since I cannot chew or swallow thin liquids. I am sure that I am not hydrating myself enough since I am afraid to drink too much water. When the tube is in, I will probably switch to pureed food from God's Love We Deliver, and then just take the liquid formula through the tube.
It is endoscopic surgery. The surgeon puts a long tube down my mouth with a light on the end of it. That helps him find a spot on my belly to insert the tube. I will thankfully be asleep the whole time.
I go into Beth Israel at 11:00 on Wednesday September 25 and stay overnight. I just have to get someone to feed Hannah on Wednesday night and Thursday morning. I will check out of the hospital on Thursday.
My dad is coming over today to discuss the plan of transport. He wants to take a car service from my house into Manhattan, but I think I will call access-a-ride from my house on Wednesday.I only hope he can park his car at my house on Wednesday morning. That will be stressful for him. He will then take car service back to my house and get his car. He plans on repeating the same procedure on Thursday to pick me up, but we can't call access-a-ride for the return because we have to give them 24-hours notice and I will not know what time they will release me. Whew.. I guess I will have to leave my manual wheelchair in my hospital room. I have to bring my own bi-pap vent machine and my medications.
I am not looking forward to this, but it has to be done before my breathing gets so bad that it becomes more risky, or cannot be done at all. As it is now, it is risky enough. My family asked if it could be done on LI, but it is important that my whole team be available from the ALS clinic, especially my neurologist Dr. Scelsa and my pulmonologist Dr. Ahquah..
As for my home care situation,it seems to be going well.I have two aides,one on Sun-Wed and the other Thurs-Sat and they seem to be semi-permanent for now. But Leslie, the supervisor at this agency is not on the up-and-up.. she tells lies and pits one aide against the other. I cannot wait until I get my medicaid number and can change agencies or hire my own aide.
Thursday, September 8, 2005 9:36 AM CDT
i don't usually update so soon but feel as though I must because
1) I need feedback and
2) I need love and hugs
Yesterday I had a very uncomfortable (to say the least) incident with my regular home health aide. She is good at what she does but she watches tv and sits on her cell phone gabbing all day.. And, she has been walking out an hour or two earlier than she should. I have put up with it because I liked her. But when I realized that half the food in the refrigerator is hers that she is storing, I started to get annoyed. But again I put up with it. I am new to this aide thing and didn't want to "make waves" And to top it off, I found my new digital camera missing.On Tuesday my physical therapist came and told her she must do my exercises with me and she kept saying "she can do it herself".
Anyway, this week Ellita has been coming in with a bit of a hostile attitude.. On Tuesday, she came in holding her neck and saying she had a stiff neck. When I asked her to do certain things she made an angry face and sucked her teeth. I didn't know if something was bothering her but didn't bring it up. Well on Wednesday morning she was sweeping by Hannah's area and she went off on me about how she isn't supposed to be doing this and that and how I don't appreciate all she does for me. Well the clincher came when she said "now get on the bed and we will do your exercises. This is my last day here because I won't work with someone who talks behind my back and doesn't tell me to my face what she thinks" I was stunned!! It seems that someone complained at the agency but it wasn't me!! Probably one of the other aides that she didn't do the laundry or that the apt wasn't clean.. well I started to cry out of frustration and my breathing got really bad and I started to hyperventillate. This can put me in respiratory crisis and I began to get scared. I think it scared her and she softened up and said she will keep coming. But after she left I did some thinking and decided to tell the agency not to send her any more.
Enter Haley to the plate. She called the agency this morning and they are going to take Ellita off my case. In the meantime it is after 11 and I have no aide. They didn't know that no one showed and are sending someone else. I am still sitting here with sleepshirt and no shower yet. And my nurse Angelica is coming later so I can tell her about the problem..
I have been lonely and depressed. I could use some social visits.. hint hint.. keep in touch everyone.
Monday, September 5, 2005 6:49 AM CDT
Still no medicaid number or card.. the law firm says my case went to Albany for review, which apparently is standard procedure when you have a surplus which is going into a pooled-income trust. Evidently they scrutinize cases like mine. My aide, who just found out she is pregnant, tells me that she is going to apply for medicaid this week and they tell her she will get her card in 5 days!! Where is the justice in that?
The only good news (if you can call it that -- read on) is that my home care will continue and there will be no gap in service. Home care is really very stressful for me. Now I understand why some families would rather take care of their relatives. I have a studio apartment and an extra body there 12 hours a day. They sometimes sit there with the tv on the whole time and don't have the courtesy to turn it off when I fall asleep. They sit in the only comfortable chair I have and some of them are on their cellphones for hours. I am at a loss as to whether to complain to the agency because I don't want angry aides and also I would complain about a lot of them and it would start looking as if I were the problem rather than they. But yesterday my regular aide called out sick and I got the worst of the worst. I needed help in the bathroom and called for her. She was on her cellphone and didn't hear me.. more on this to come
My heart is breaking for the refugees down south. I don't believe this is happening in the greatest nation in the world! I have been glued to the tv and I feel so helpless. I want to go down there and I at least want to give money which I don't have. All I have are my thoughts and prayers. I cannot stomach George Bush! The very sight of him makes my skin crawl. The fact that it took so long for the National Guard to respond, I blame on him and this horrible war we are in. Some of our refugees have done duty in Iraq and say that we are doing more for the Iraqis than for our own people!! Bush is an evil man!!!!!
Last Sunday Haley and Claude and my dad and the kids came over and we all went to dinner at Pizzeria Uno. I get such joy out of seeing those kids!! They are growing so fast and becoming such mature human beings. It was my first time out of the house in a long time and we capped off the evening with Cold Stone Creamery! My next time out was a week later -- last night!!
The wedding: I went to Desirée's wedding last night. What an affair! At the Woodbury Country Club- food was fantastic, the reception at the beginning out in the garden was gorgeous, and the people were nice. But my favorite part was when the dj played Indian disco music and the guests danced Bollywood-style to the music. I wanted to get up and dance and it depressed me that I couldn't. Desiree and her husband are from Guyana and so there was that mix of British, Caribbean and Indian!!
I cannot say enough about Louise. She drove me to the wedding, and had incredible patience. She is the only one who doesn't try to finish my sentences and lets me move in and out of the car and in and out of the bathroom stall at my pace. She doesn't act impatient and is gentle and understanding. This comes from being around me enough to know my daily struggles. She has also taken a sincere interest in my condition. She comes to support groups and clinic visits with me, and checks in with me every day, sometimes several times a day. I am truly blessed to have her in my life. A really unique person!!
Friday, August 26, 2005 12:09 AM CDT
Still no medicaid approval and card, and I am reaching a crucial point. On Wednesday, my physical therapist told me that today was supposed to be my last session but he was extending it two more weeks, and this would give me two more weeks of home care! I didn't know my home care was attached to my physical therapy! And, the Visiting Nurses called later that afternoon to see if I had my Medicaid number yet. I emailed Eileen Mullarkey at the ALS clinic and she said that, until I got my medicaid number, my home care was dependent upon a "professional need" such as a nurse or physical therapist. Once my medicaid was approved, it switched to a different agency. So I am emailing the law firm but so far no response.I came close to losing my home care as of today!!
Ron Arroyo from Assistive Technologies came on Tuesday to train me in the Mercury. That thing has become a life saver. I even called Haley and Dad on speaker phone and they understood it. I will have to send it to the company to have a part put in so that I can plug it in directly to the phone. I also have to go to Helen Hayes soon and have the "blocked" features reinstalled. Since Debra from Helen Hayes is on vacation until mid-September, I will have to wait until then.
The other crucial deadline looming is my wheelchair. If I don't get my medicaid number this week, I have reached the expiration of my wheelchair approval and will have to re-submit the paperwork and wait probably another couple of months.
I sent a letter to the NYC Commission on Human Rights saying that my condition was still such that I could leave and enter the building independently. The building management is claiming that they don't have to accommodate me because my condition has worsened and I can no longer move around independently. I guess they all got medical degrees since I left the board! Anyway, HR wrote to them and now demanded that they submit their plans and a realistic timetable with which to satisfy the required accommodations. Maybe some day........
So, that is where I stand. I finally got home care but may have it taken away, at least for a while..
Oh one more thing:
Jennifer and Judy, two ladies from my volunteer days at Broadway Cares/Equity Fights AIDS came on Saturday. We had a great visit. And yesterday aunt Debbie came to cut Hannah's nails. We had a great visit too!! And Team Fern is still collecting money, with Deb Goldstein really going out of her way to send letters to people for contributions. And Maddy is volunteering at the Walk to give out tee shirts!! Go Team Fern!
Saturday, August 20, 2005 8:03 AM CDT
Well my home care was increased due to a scary episode that I will talk about later. I have Ellita, who has been my regular aide, for 12 hours a day 4 days a week,and Shameeka 3 days a week. The hours are 8am to 8pm and I know this won't help me at night, but I have to increase bit by bit as the condition worsens.
The co-op management tried to claim that I am no longer independent and that my condition has worsened so that they no longer need to provide me with any accommodations. Well I answered that in a letter to Human Rights that said that I have still been using my scooter and the doormen and super know this - they have been opening the door for me all summer. And just this Tuesday night, Peter the super had to come out of his apt at 9:30pm to let me in when I came home from my evening support group. Furthermore, I gave them the phone numbers of Eileen Mullarkey and Allison Gurwitz from the ALS clinic for verification. Bob Tilley of HR wrote to them saying that their allegations of my condition are obviously inaccurate and told them they must present positive evidence that they are taking care of this, and they have to present a timetable of action. I am so glad the board have all obtained their medical degrees since I left the board, and now consider themselves qualified to assess my condition. Mind you, never once has one of them come and talked to me about it.
I got delivery of my Mercury™ augmentative communication device. I am trying to hook it up and get it running before the rep comes to train me on it.. Long time coming.........
Jen and Judy, two ladies I did volunteer work with, at Broadway Cares/Equity Fights AIDS, are coming for a visit today. I am looking forward to it. I also ordered food this morning from Fresh Direct, because I can put it on my charge card and then pay it through the pooled income trust.
The heat wave is calming down and heat is not as oppressive.
Oh, the nighttime episode:
On Tuesday night/early Wednesday morning, I got up to go to the bathroom only to find that my legs wouldn't work. My left leg especially, wouldn't work and I couldn't bend it. I could not get out of bed. Basically, I pushed my medical alert button and told the operator to call Lisa, who came down, got my legs working, and got me out of bed. I stayed up from 3am until Ellita arrived at 9. I was afraid to go back to bed!! Solution: Yik-Ming, my PT is ordering a semi-bar on one side of the bed and a trapeze overhead for me to grab onto. And, the increased home care hours to eventually morph into 24-hour care..
whew -- good news bad news but more good than bad. Now for the arrival of my medicaid card and number!!!!
Saturday, August 13, 2005 8:18 AM CDT
I went to Silver Point yesterday to Haley and Claude's cabana. As if I needed more evidence that the sea air was beneficial to me, I noticed that I didn't cough or wheeze while I was there. It was as if my lungs just opened up!! And, I slept through the night last night!! I cannot believe how quickly the summer has flown by!! I think Haley and I thought I would be out at the beach often and yesterday was only the second time!! The time just runs away sometimes. It scares me when I think my time is limited and will run away from me.
I have been more depressed than usual. I think I realize that it has been so hot that I can't go out much of the time and the summer is running away. I never know if this will be my last summer. Also, having no future to plan for, I begin to question my value. I can no longer be an aunt to my nieces and nephew. I can't have them over to spend the night, and otherwise participate in their growing up. I have become the additional child of the family. Friends have all but disappeared and I can no longer pick myself up on the spur of the moment to go enjoy an event in the city or take a class. I rarely see people and when I do, I cannot speak to them. I have begun to wonder why I am pursuing the feeding tube route, because I wonder if it is even wise to want to extend this life. With all the opposition to stem cell research, the hope of a cure or even better treatment seems more elusive. The management of my building is fighting my effort to modify the entrance's accessibility by accusing me of deceit. They have told the Commission on Human Rights that my condition has worsened and I can no longer move around independently, thereby justifying their refusal to make any changes. And, I have still not received my medicaid card, and have had to pay for more medication out of my pocket. The state tax board called this week for my 2004 tax payment and said it is going to legal action!! What are they going to do? Put me in jail? But I have to admit, I have never been in a position like this in my life and it makes me very uncomfortable.
Team Fern is underway for the Walk to D'Feet ALS.. I got awesome commitments from Debbie Goldstein, Michelle Auletta, and Stacy Wogalter, and donations from others. You can see the progress on my team website. My team is 5 people so far and I hope more will sign up. It will mean so much to have friends and family walk with me. Louise is of course signed up,and so is Haley. Debbie and Michelle are signed up and Maddy may go too.. the website is www.als-ny.org and click on the link for the walk.. go to Team Fern.. and please sign up and join us on Sept 25 at Eisenhower Park!
Thursday, August 4, 2005 9:36 AM CDT
Whew it's been a long time since I updated this
I have a permanent (?) aide now named Elitta.. She has been coming for about a week now, so she knows the routine. She works 9-5 M-F and 8-4 on weekends. She has off every other weekend. I am assuming I get someone else in her absence. It is nice to have someone picking up after me, helping me dress, and even help with Hannah.
I am told that medicaid coverage will come thru in August so I am checking the mail every day. I had to order another refill of my rilutek from England via Canada and I am hoping this is the last time I have to pay $400.00 since I had to put this one on a credit card -- no more money left.. oh well...
Yik, my physical therapist has been coming 2x a week and I have exercises to do to loosen up the spasticity and improve range of motion (ROM).
I have been staying inside a lot due to the humidity but I have terrible cabin fever.
The Commission on Human Rights contacted me. The co-op board came up with some ridiculous call button system as a plan for my access. I told them this would never work for the same reason I have challenges now -- half the time the doorman is out to lunch or away from the door to clean the floors, and the super is out of the building. Nothing short of a button which will open the door automatically, will do! The whole idea of all this is "independence" -- not having to rely on the availability of other people. We all see how that has not worked to this point.
Anyway, the battle continues, although I have to admit that I lose the will to fight sometimes. A life of staying inside and almost seeing no one but the aide does not add up to a good quality of life for me. I have even to ask myself sometimes what I am contributing.. if I didn't have Hannah to care for, I don't honestly know sometimes. I feel very disconnected much of the time.
Friday, July 22, 2005 8:03 AM CDT
Hi everyone.. I realize I haven't updated in a long time but I will make up for it with news:
after a lot of following up and glitches, I finally have home care -- 12 hours a day. Now, there are some things I have to work out, like the home care attendant is only authorized to accompany me on medical visits. So if I go away for the day on a social visit I think I have to cancel the home care. I am not totally sure how this works, but I am sure I will work it out. But, I seem to be having less and less social visits anyway, so maybe it won't be much of an issue.
And then there is lack of privacy. I am definitely not used to having someone here all that time. Disabled people are entitled to privacy despite what some may think.
Hannah is pretty much free-run although she voluntarily spends a lot of time in her enclosure anyway -- it seems to be her comfort zone. She is very friendly to the people who come in and out of here. She is pretty much litter trained now.
My bi-pap mask has to be changed. After two attempts to fix the hissing coming from it, the respiratory therapist says I need a different kind of mask.
My clinic visit was on Monday, July 18. Nutritionally, I am switching to the vegetarian meals at God's Love We Deliver because they are easier to chew, but I have since learned that they have a chopped and pureed meal plan as well.
I have to have some blood taken for my evaluation for my PEG feeding tube, which I estimate will be put in sometime this autumn. It will be done at Beth Israel and I will just stay overnight.
Dr. Scelsa says there doesn't seem to be any significant deterioration in my muscle function. I seem to be at a plateau there, which is a good thing.
I will begin having home physical therapy in the next couple of weeks. Mostly for transferring and range of motion.
Devra sent more chocolate from Alaska. She knows how to get to my pleasure zone. And Louise invited me to her church barbecue/picnic which was lots of fun and a good opportunity to get out.
I bought a Magna-Doodle which is a child's writing tool. It helps me communicate until I get my aud-comm device. I am also going on ditropan-XL for urinary urgency. Let's see if this helps.
I think that is enough for now.. until next time...
Saturday, July 9, 2005 10:43 AM CDT
So Haley invited me to the beach club last Sunday. She booked the Access-a-Ride to Nassau Able-Ride Connection for me. I was picked up by Access-a-Ride in front of my building promptly at 9:30am, and dropped off at JC Penney at Green Acres Mall at 10:00, which was my connecting point. I didn't know what time LI Able-ride was picking me up at JC Penney. In the meantime, the store was due to open at 11, and all the employees were coming in. I called Able Ride and found out that my connection to Silver Point Beach Club was between 11 and 11:30. So I prayed I wouldn't have to go to the bathroom while I was waiting. I called Able-Ride when they didn't show at 11:30 and they said he would be there in 10-15 minutes. Long story short: he arrived at 12:15pm, and I got to the beach club at 1:00. I figured out I could have been in Florida by then. Oh well, the beach was beautiful and Haley's cabana this year is in a great place, up on a raised deck (fully accessible by ramp). Her neighbors are also great. My return trip was better. I left by 6, my connection at Green Acres was early and I was home by 8.
Kudos to Lora Frisch who came over on Wednesday to help me food shop. Lora only met me once at a class at the Ink Pad, and then again when she came to purchase some of my rubber stamps. She took the subway from the Bronx. Help comes in some surprising forms. Sometimes those who are in the neighborhood, some of whom know me for years, don't have 20 minutes to stop by and just help with garbage and marketing, but this woman takes the subway from the Bronx!! I was touched!! As you can guess, still no home care, even though the law firm has completed my application for medicaid and home care. With a disease like ALS, I could literally be dead by the time they send someone. oh well, some things are out of my control
Louise's cousin suddenly died in Ohio, so she had to drive out there and attend the wake. She left on Sunday and came back on Tuesday. What an angel. Her sister Barb sat at her cousin's bedside for something like 2 days!! I can see that compassion runs in that family. On Tuesday, Lauren came over and did my laundry and some cleaning for me.
And another grim reminder of my limitations. My neighbor Desiree invited me to her wedding on September 4th. The church is around the corner but there is no way I can attend the reception at the Woodbury Country Club. I am invited with a guest, but someone would have to transport me and my wheelchair and then wheel me around. And attend a wedding with strange unfamiliar people. Not to mention that "guest" means date, not just someone to give me a ride. And go shopping for appropriate attire? That is real funny!! It is a shame because it sounds like a lovely affair, but once again reality bites!! I am honored to have been invited. Desiree is selling her apt and moving out too so I am losing a neighbor. Life keeps changing, and people go on with their lives. I keep being reminded that I am coming to the end of mine. Sometimes it is all I can do to motivate myself to keep going. I always valued my ability to socialize. I just ordered a Magna Doodle, a children's magnetic erase board, so I can write down key words in what little conversation I have these days.
Sunday, June 26, 2005 9:10 AM CDT
I am getting extremely frustrated with my inability to speak clearly. I have to IM friends to make phone calls for me. At the symposium last weekend, I ran into the woman from Helen Hayes who is supposed to be getting my speaking machine for me. Guess what? She said she was waiting for a "go ahead" from me. I thought I gave her the "go ahead"..and when she didn't hear from me, why didn't she follow up?..sigh.. now I will probably get the machine at the end of the summer. Don't they know they are dealing with someone who singlehandedly has to worry about doing little things like throw out the garbage and maintaining a ventilator and a cough machine?..aarrrghh
The activities of daily living are getting to me, since the law firm seems to be dragging their heels with the home care and the medicaid. Just when I think I have all my documentation straightened out, they send me a letter asking for something else!!
But, on the positive side, Hannah arrived yesterday. She is a 7-year old lop bunny who right now broke out of her pen and is hiding under the bed. I guess if she wants to eat her breakfast she will have to come out sooner or later. She has been through a lot. Her owner in Garden City died and the niece wanted to let her and her sister loose. So I have a new pal. And the surprise of my life!! Dr Saver tells me that an anonymous benefactor paid for my bill for Penny!! I have an idea who that might be... I was driven to tears.. there are apparently those who care about me out there..Sometimes I think that no one knows I exist anymore.
Those of you who are saying prayers, please pray that I get home care and medicaid soon. I have one person who comes by regularly to check on me-- Louise. She calls or emails me every day more than once and comes by every weekend to help with errands and chores. And I am hiring her daughter Lauren to come by as well and do laundry. But it is too much for one person. She is a single mother and full-time employee herself. And she has Lawry to look after, who has had health problems of his own. But I am lucky to have her.. she is a special person. Everybody has his/her own life, and that is why I need this home care, and why I paid practically all the money I had, for this law firm to take care of this. I have always taken care of everything myself. To be at the mercy and kindness of other people has been the hardest thing for me to deal with.
Monday, June 13, 2005 7:26 PM CDT
This was a crazy weekend. On our NYCBUNS list on Yahoo, there had been a woman who, two weeks ago, posted a message that her aunt in Garden City had died suddenly, leaving behind two seven-year-old bunnies. Well, all the shelters and bunny foster homes are full but she tried to get them adopted. On Friday she posted that she was moving to Virginia the next day and had to "dump" the bunnies. She was going to let her dad "deal with it" She already had two bunnies of her own and couldn't take two more. A while later, she posted that her dad was going to set them loose. She was so cold, saying that she was leaving tomorrow and she couldn't deal with the bunnies anymore. Well, letting them loose is certain death, so Deb and I were panicky. Bottom line: Deb got Dr Saver to agree to board them at half-price until they found a home. Of course this woman said she has no money and she is not paying. So now Hannah and Angel are at Dr. Saver's and we are all donating what we can to keep them there. This is tugging at my heartstrings. I see a little bunny in my near future. I can't take them both.
In the meantime, Mary Cotter posted that there were a bunch of white lab bunnies due to be euthanized on Saturday unless they found homes. If Hannah and Angel hadn't come about, I would have taken a lab bunny right away. So many bunnies in need!! The shelters are overflowing and MaryAnn Maier got 300 calls just this week for bunnies in need on Long Island.
I received word today that the pooled-income trust was opened this week and soon my bill-paying will all be taken care of. My rilutek that I ordered from a Canadian pharmacy arrived from Surrey, England. For $390.00 USD. I paid $940.00 for the same amount of pills a couple of months ago at CVS.
Lawry offered to go with me on Saturday to the annual ALS Symposium at the Javits Center. Louise is away at a retreat Friday to Saturday and nobody else could go. I thought it was wonderful of Lawry; apparently he wants to go. However, he is in the hospital with gall stones!! He will have to get his gall bladder removed in a couple of months. In the meantime, he insists that he is going with me if he is out of the hospital; otherwise I will have to go alone like last year.
I feel isolated. I try to get out on the scooter at least once every day just to get out in the neighborhood. But in the hot, muggy weather it is difficult to breathe, so inside with the a/c is best for me. Louise and I were supposed to go to the beach today because the sea air will do me a lot of good. But we went to see Lawry in the hospital, which is right by my house. Then we came back here for the usual cup of tea. Louise is still catching up on sleep she lost when she spent all night in the emergency room with Lawry on Friday night until 5am on Saturday morning.
Monday, June 6, 2005 10:22 AM CDT
Although I am beginning to accept the loss of my dear Penny
bunny, I am taking this opportunity to rearrange some things
so that my apartment works better for me and for any new
bunny I take in.. I am getting rid of the dog crate and I will
put up an x-pen so I can have a more fluid sanctuary for the new bun, and it can be more adjustable and mobile. I can then put a rug or sheet and cleanup will be a lot easier. I think my
new bunny will only be out when I am home, and the rest of the time, can relax in her new space. I not only spoiled Penny but put her at risk to too many hazards that could have hurt her. And, of course my new bunny will be a shelter rescue from the House Rabbit Society, already spayed or neutered and socialized. I am going to go through the summer bunny-less so I can devote the cooler inside house time to my new baby.
As for my situation, it is finally coming together. The social worker was here to evaluate me for home care and, as soon as my doctor signs and returns the forms, the Visiting Nurses will be here for a formal evaluation and I will have help. As soon as NYSARC pays my bills and my bank account goes down, my Medicaid will go through , although it may take a few months for me to get drug coverage. I ordered rilutek from Canada and it will take about a week if it doesn't get held up in Customs. Last night there was a segment on Sixty Minutes about why drugs are so much cheaper outside of the US, and it was mind-boggling. I can't recap the segment, but how many of you saw it? Apparently my rilutek is coming from a supplier in London! And it is one-half of the price I paid at CVS!!
Penny's ashes are in!! The vet called. And my bill for hospitalization, euthanasia, and private cremation is only $350.00!! I have pet insurance, so maybe I can even get some of that reimbursed! Goes to prove that Dr Saver is certainly the honest compassionate vet I always knew her to be!! Lisa said she wishes she cared for dogs so she could bring Tucker and Smitty there! If you have cats or bunnies or other small pets, go to Catnip and Carrots in New Hyde Park
Saturday night I went out for my birthday (50 on June 7) with Haley, Claude, Tyler, Rianna, Jenna, Dad, Louise and Lawry!! It was so nice.. the food was great and it was nice to see everyone. the new photo is of the four kids I love the most -- Penny, Tyler, Rianna, and Jenna, the night before Penny crossed over the Bridge. I can't wait to get Penny's ashes and put them in my apartment. When my time comes, I want her urn to lay alongside me.
Once again, thank you to everyone who has been writing to me, and a special thanks to Louise who comes over and throws out my garbage and otherwise straightens out my mess, Louise and Lawry who push me in my manual wheelchair and get me out, and Lisa who brings me my pizza from J and D (your garlic powder awaits on the table, and fights off the legendary Rego Park vampires in the process).. and to Debbie G -- my bunny godmother,for being there for Penny and me, and checking in with me during my bunny shiva. And Dr Saver for being a compassionate vet! Not to forget Maddy D., Donna S, Nancy S, and MaryAnn M. for being there too!!
Soon to come: feeding tube evaluation and intermittent catheterization.. Bet you can't wait to read those entries!!! I will go await my deliveries of hospital bed and God's Love We Deliver meals.
Wednesday, May 25, 2005 9:34 AM CDT
To Penny on her first day in heaven,
I had to send you back to your creator. He began calling you last week when I noticed that you didn't want to leave me. I should have known when you started peeing on the bed and outside your litter box. I knew something wasn't right, but I thought you were just freaking out from the loud construction going on in the apartment across the hall.
When you woke up on Sunday and didn't jump on the bed begging for breakfast I knew there was a big problem. So I called all your aunties. Aunt Nancy caught you in your sanctuary under the bed and brought you to Dr. Saver. That was why you were in a cage. I hated to have you cooped up because you were always so free hopping around at home. You had a stone in your kidney which moved into your ureter and caused a blockage. You couldn't be saved or I would have done anything I could. So I didn't want you to suffer.
Doc sent you home on Monday with Aunt Deb and the doc called me and told me I could send you to heaven that night (she would come over to the house) or I could bring you the next morning and we could spend one more night together. I wanted to have that one last night with you, and I am so glad I did!!
Tyler, Rianna,Jenna,Haley, and Claude wanted to come over and take pictures of you and say goodbye. Rianna put a picture of you in her locket. Tyler had tears for you. Their home was your first home before you came to live with me. They thought I would enjoy your company so they sent you to me. We had a bond nobody could break. Even when I got ALS and Poppa told me to rehome you and go live with him and the dog, I couldn't do it! We had to stay together!! I am so glad we did.
Aunt Louise and Aunt Lisa also came by to say goodbye. You were a very special bunny to them. They will miss you too.
And Aunt Deb and Nickels and Samson the cat -- what a lovely 2-week visit you had with them. They missed you so much when you came back home. And Nickels loved you -- I am so happy you had a romance for a while!!
Other people miss you: Crystyna the cleaning lady , Juan, the building porter, Peter, the building super, Jimmy the doorman, Lauren Foisy, Lawry Smith,
But most of all, I will miss you!! I am crying as I write this. Your stuff is still here. Come back and visit if you like.. play with your toys. And soon, when I open my home to another bunny in need ( the shelters and rescues are full to capacity!!) come visit and tell the new bunny what a loving mom I am.
I hope you had a good trip across the rainbow bridge. And I hope heaven is even better than my home. I will always have you in my heart long after your stray poopies and fur are cleaned up.
I WILL ALWAYS LOVE YOU
Monday, May 16, 2005 11:25 AM CDT
I had a very eventful weekend last weekend. I almost lost Penny. I knew something was up when I slept until 9am without her coming up on my bed and rubbing against my face, which she usually does at about 6am. Rabbits are crepuscular, i.e. most active at dawn and dusk. They usually sleep during the brightest part of the day, when their predators are out and about. So Penny wakes up at dawn and goes down for her nap at about 11am or 12 noon and then wakes up again about 5 or 6pm for her dinner. Then at bedtime, she comes up into bed with me to get petted and when she is satisfied with that, jumps down and sleeps on a yellow and white blanket on the floor, or on one of the area rugs.
So I knew something was really amiss when I gave her breakfast at 9 and she didn't touch it. She was hiding under the bed, and a little while later, she came out, went into her abode, looked at her breakfast, and went into her litterbox in the kitchen, where she laid down listless. I panicked, called Lisa and Louise, and thought she was dying. Her ears were cold. Lisa called the vet, who said it was probably gas (which is ultimately fatal to bunnies when it causes them to stop eating and moving their bowels -- a condition called "gut stasis") We had to administer infant mylicon, warm her up with hot towels, and give her belly rubs.. we did and she perked up in a couple of hours. That evening she ate her dinner and even begged for more. By Sunday she was fine.
Sunday I had a great Mother's Day dinner (compliments of Lawry) with Louise, Lawry and Lauren at our favorite place, Annam Brahma in Jamaica. It is owned by followers of Sri Chimoy and it is great. I got a loaner manual wheelchair from the ALS Association and we folded it up and loaded it into Louise's car. They wheeled me around and it worked out perfectly.
I am being evaluated soon by a gastrointestinal specialist for a PEG feeding tube. I can still eat soft foods by mouth, but they have to do this surgery before my breathing gets so bad that it is risky to operate. i am not thrilled abou t having a hole in my belly with a beachball-like tube and button coming out, but I also don't want to miss the window of opportunity, as it is better to do it sooner than later.
Lauren is coming today to act as my aid and do laundry and light chores. My new vacuum stopped working while Louise was vacuuming my living room on Saturday. So she came on Sunday and returned it to Bed Bath and Beyond. It was out of stock , but will be delivered within a week. My printer died last week and I bought a new Epson all-in -one at the low price of $99.00 .. such a deal!!
Saturday, May 7, 2005 9:20 AM CDT
I am kind of lonely and down lately.
After ten days of not hearing from Stephanie (she said she was going into the hospital),I got a surprise phone call from her asking "Do you want me to come today?".. I was stunned .. No "sorry I haven't called" or explanation about why she hadn't called. I also got a little tired of her looking at things inside my apt and asking if she could have them or send them to poor people in Trinidad..So this last phone call really set me off! I just told her not to come anymore. And she had said derogatory things about Jews, about how Jewish men were perverts, etc, which made me feel uncomfortable.
Louise said Lauren would be available at the same pay to help out so I will hire her. But in the meantime, my place looks like a mess.
I slept until 9 today which is highly unusual for me and when I put food in Penny's dish she didn't touch it.I am really concerned about this because when rabbits don't eat it usually means trouble. I hope she goes for her pellets and veggies soon or I will have to get her to the vet.
I guess I am just going thru a "poor me" time. Hopefully, it will lift..
Monday, May 2, 2005 7:22 PM CDT
Well another week has gone by..
I received a copy of a letter that NYC Human Rights sent to the lawyer of my co-op, acknowledging that the co-op has agreed to have an engineer come in and survey the building for accessibility. The HR Commission follows up to make sure that there is compliance within a reasonable amount of time.
I got a note from the ALS Association that they are ordering a cough machine for me to use twice a day. One thing I am worried about is the fact that my breathing is below 50% and usually they don't put in a peg (feeding) tube when the breathing is below 50%. So when Eileen calls with the summary of my visit, I am going to express that concern to her.
The missing part of my Medicaid application, the check from the Teachers' Retirement System for disbursement of my retirement money, came on Saturday. I put in a call to Juan at the lawyers' office to see how I deposit it, and he is going to get back to me. I can't wait until I can get my hands on the money to pay some overdue bills.
After a week and a half of not hearing from Stephanie (she called me 10 days ago to say that she was in the hospital for her optic neuritis), she finally called and just said "Hi, do you want me to come today?" No "I'm sorry I haven't been in touch" or anything like that.. I really have been baffled by her erratic behavior so I said "No, don't come" and she slammed down the phone. As an interim measure, Louise's daughter Lauren will come to help out and make some extra money. Louise stopped by yesterday to give me a hand with some things, and Lisa came by in the evening to take me to JD for Italian food.
Next week I should get the hospital bed, and I have to make arrangements to pay the doorman or the super to take out my old bed. On Mother's Day, Lawry invited me to go out with him and Louise to my favorite place, Annam Brahma, for Indian food. But on Saturday we are going to the surgical supply store to buy a folding wheelchair so I can be wheeled out to her car .. I can't use the walker anymore out in the street.
Thursday back to Columbia Presbyterian for part 4 of my 5-visit marker study -- a study to determine certain characteristics of ALS and changeover to PLS..I have a transcranial conductor study, EMG, and 75-minute MRI (I fall asleep in the tube)..
And......... Rianna now has her own screenname. I look forward to IMs and emails to my gorgeous baby... !!!!!
Tuesday, April 26, 2005 6:12 AM CDT
Yesterday I went for my quarterly evaluation at the Beth Israel ALS Clinic.
Neurolgist Dr. Scelsa: after doing my strength evaluation, he determined that my progression is still slow and my upper body has not lost strength but my lower body has lost a little strength, but not much. I asked him about my urinary incontinence and he said that this is usually not a symptom of ALS but more of the PLS upper motor neuron component.Took a urine sample to rule out an infection, but also is referring me to a urologist to talk about intermittent catheterization.
He said I am still upper-motor-neuron dominant, which is good.
Swelling in my feet: this is happening from the lack of movement. I need to elevate my feet more.
He also gave me a prescription for a pain killer for the pain I am having sometimes in the back and the legs.
Dietary and Swallowing: Lynn and Karen
I am maintaining my weight, which they were happy to see. I reported to them that I am eating softer foods.
Physical and Occupational Therapy: Dave and Allison
I really need that hospital bed even if it means I have to pay the 20% deductible on the rental until Medicaid kicks in. When Medicaid kicks in, Dave is going to get a physical therapist in my apt to assess for grab bars, and to teach me and any care attendant a stretching and range of motion routine.
I updated Allison on my progress with the speaking machine and the wheelchair (I am going to Helen Hayes on Thursday), but she and I are in constant email contact.
Respiratory: Betsy Thomason
This was the crucial part. My forced vital capacity is only 33% so I have to watch my stress level (ha! that's a good one -stress has been my middle name) and I am getting a cough assist machine. We talked about the possibility of a a tracheotomy and vent and I realize this is not an option for me since I don't have the necessary support system for that and Medicaid will never give me round-the-clock care. Nursing homes have very limited vent units. So, the bottom line for me is this: if I go into respiratory distress, I probably go bye-bye because I cannot go on a vent. So, I have to do everything possible to avoid that. I have to limit my stress level and maintain use of the bi-pap and use the cough assist. I also have to be careful not to exhaust myself.
Louise called my dad to update him because it is not possible to have a phone conversation with him. He was happy with that but I don't know how much he absorbed, or wanted to absorb.
Friday, April 22, 2005 10:38 AM CDT
Well, onward and upward.. struggles and triumphs
On Tuesday for the first time I attended the ALS Association Support Group at Beth Israel.. I was glad I went. I was only one of two patients there.. the rest were friends and family of patients.. The other patient was with her mom. Everyone remarked about how wonderful it was that I came alone. But the reason I never went before was because I didn't want to go alone. And I hemmed and hawed every month. Well this time I called the access-a-ride and there was no turning back.
The meeting was about Advocacy Day in May in DC, and the Walk to D'Feet ALS .. I want to go to DC but I cannot go for three days. Even in a handicapped-accessible room it would be difficult to stay in a hotel room alone. And I couldn't afford it. So I may take Amtrak for the day if I feel I can have the strength, but that will be tough too!!
As for the walk, Donna told me she is interested and that she spoke to Haley about it. Louise said she will try to get a team together from her church.
But the nicest thing that happened was that there was a rep there from Aventis, the company that makes rilutek. I was telling her how I didn't know how i was going to pay for more rilutek until I got on Medicaid. Well at the end of the meeting, I went to the restroom and there was a lady who came to the meeting whose husband had recently passed away. She gave me a whole bottle of unused rilutek -- One month's worth. I just paid $940 for a month of the drug ($800 from dad and $140 of my own money)!! What a blessing!! It was meant to be that I would go to this meeting..
Prayers to Donna on her health crisis. Happy trails to Haley and Claude and my darlings -- Tyler, Rianna and Jenna-- who are going to Florida for the week. She is trying to give them the childhood we never had. I used to come back to school after spring break and envy all the kids who went away. A one-day trip to the Catskills to see my aunt and uncle who ran the coffee shop at Brown's was all we had (we usually didn't sleep over either). I am still bent on taking some kind of a last trip before I leave this world. Not sure what kind of trip I can do alone, but I am sure I can figure it out.
Passover is eating at me. No seder to go to, and no way to celebrate. No money for one of those paid seders, and my Dad doesn't do anything. We really didn't have much of a Jewish tradition in my home. But later in life I really liked following some of the traditions. It gave me a cultural identity. I am losing a lot of my identity anyway with this illness. More next time..
Monday, April 18, 2005 11:08 AM CDT
The weather is beautiful today in NY. Right now it is 68 degrees and it is supposed to go up to 75,
With the coming of summer come new feelings for me. I love to be outside, but I am so limited. My mind races in my usual obsessive ways -- maybe I can go into the city and ride around on my scooter, and do all the things I used to do when I was healthy, just not walking. But then reality hits -- I can't talk to people, I can't eat like most people, and people's lives are even busier in the summer. Suddenly people go visit others and take little excursions. Nobody will have the time to stop by and visit when they can go to the beach, the park, the city. I have always known how to do things by myself but last summer I was able to drive. Now I can't go anywhere that is not accessible. I go back and forth between feeling that I can do things for fun, and then I feel that I have nothing to look forward to except a feeding tube, catheter and possibly vent (if I choose). I try to let the positive hopeful feelings dominate. On the other hand, I don't want to constantly run around all summer to escape myself.
On the practical side, I am closer to having all my documents in order for Medicaid, and I actually booked the access-a-ride to take me to a support group at the ALS Association tomorrow night. The subject is activism. They are recruiting PALS (people with ALS) and caregivers (called CALS) to go to DC in May for an awareness day and to meet with our local Senators. I would have the opportunity to meet Hillary Clinton.I would love to be able to go, but I have a feeling I would have to pay for a hotel room, and that I would have to take a caregiver (don't have one).. but I will go and see if there is any way I can help out. Mr. Tilley from the Commission on Human Rights called on Friday to say that the official letter will go out to the management company advising them of the ADA violations and telling them they must respond within 10 days.. I will try to keep the faith. Maybe some good will come out of this. I would like to leave a legacy.
Monday, April 11, 2005 5:19 PM CDT
Oy.. they don't make it easy.
The only place I can go for my wheelchair is the Helen Hayes Hospital in West Haverstraw, NY. I went there for my speaking machine evaluation, and Louise drove me up there. Now she has been nice enough to agree to take me up there again for two visits for the wheelchair evaluation and fitting. I come to find out that there are three necessary visits!! But the woman up there offered to consolidate two visits into one by having the wheelchair supplier there for the first visit. Normally he is there for the second visit. So I am hoping we can make an appt soon because after that visit, it takes another 2 months until the next appt when I actually get the wheelchair.
Ok, good and empowering news!! I had a meeting last week with Robert Tilley with the Dept of Human Rights of the City of New York. He came with tape measure, door-pressure tool, and camera. My building is in violation on many counts of the ADA. The elevator doors need to have the pressure reduced, the back entrance needs to have a railing all along the slope. And, there has to be a button (I would get a remote control) on the back door (and the pressure has to be reduced).. as far as the front entrance, there is nothing that can be done with the steps going from the apt to the lobby, but I expressed a need to have access to the lobby as shelter while waiting for a ride. So, they need a small ramp for the two steps going up the front.
Next step: a letter goes to the management company telling them they have to comply. I expect them to fight this. So then it goes to arbitration and finally, if necessary, to a jury trial. So we will see how far the coop will take it before they finally comply.
Otherwise things are coming along with my medicaid application. I should have home care soon, and the drug card after that.. One day at a time.........
Monday, April 4, 2005 8:14 AM CDT
I don't even know where to start
more chocolates from Stacey, my bunny rescue friend, and a box of truffles from Devra in Alaska.. (did I mention the chocolate from Disneyland and the cocoa from Alaska previously?)!!!!!!
First, my bathroom is done from a contractor's point of view.. he came back to put in the grab bar and now it is much easier to get in and out. I have even been taking some quick showers in the evening too. It is wonderful. The super came in on Wednesday to fix the hole in the bathroom ceiling and left frustrated. He said it was still leaking. So he called a plumber who came back the next day to change pipes. Again, workmen in my bathroom making a mess. They cleaned it up pretty well but, the whole time it was going on, I had this déjà vue feeling of "here I go again". On Friday, the super came in and put in new sheetrock and the first coat of plaster. He is coming in this week for another coat of plaster and paint. And then it is all fixed.. whew!!
Penny's aunt Debbie came on Friday to bring back her blankie and to bring some hay from Dr. Saver's. Penny hid under the bed the whole time and wouldn't come out. She was thinking "Oh no. The last time I heard that voice, I left my mommy". No amount of coaxing, even shaking her treats, could get her out. Five minutes after Debbie left, she came out. Smart bunny!!
Louise came over on Saturday and we watched the movie "Monsieur Ibrahim" and hung out. On Sunday, Stephanie came and we went out to the big Associated supermarket. It felt so good to get out!!The weather is getting warmer. Sunday evening Lisa brought pizza!! yay!!
Oh, and I am at the mercy of the Board of Ed again!! The attorney advised me in a conference call on Wednesday, to collect my pension money. So I had to resign and send proof of resignation to the pension, and they say it will take up to four months to get my money! The lawyer says she can probably arrange for the care before all that, because the care agency will wait for payment from Medicaid. But the drug card will be another story. She said I can collect my receipts and apply for reimbursement later on. I cannot get the rilutek because I don't have $800 a month to lay out.
This week, I have an appointment at the pulmonologist on Tuesday. On Thursday, Robert Tilley from the Human Rights Commission is coming to do an inspection of the building to see if they are violating the ADA. Then the Independent Living Center of Queens. And I am in the process of getting my $2000 allocation grant from the Muscular Dystrophy Association for my wheelchair and augmentative communication machine.
LOTS OF PAPERWORK THIS WEEK!!!
Sunday, March 27, 2005 9:44 PM CST
Well, the bathroom finished up on Friday and I had my first shower in almost two weeks. It looks beautiful but it is almost too big. I have to put together the bigger chair that I have because I have a heck of a time stepping in and getting into the small shower chair I have. The plumber is coming in sometime this week to put in a grab bar. Right now I hold on to the sink and the faucet to get in, which is not a good long-term plan.
Penny is home!! I missed her, but I think she is readjusting to home, because she isn't eating much.But I wait for her to jump into bed with me tonight so I can pet her and love her. Debbie was the best auntie she could have. She brought her back with some new toys, including a stuffed bunny that looks like her, and a roll of pictures of Penny and Nickels(her new bunny boyfriend) and Samson the cat.
Louise came over this evening with spinach souffle, champagne, croissants, and cake.. it was great!! I am so grateful for the friends I have. I got another wonderful Godiva package from Stacey, the bunny mom upstate, and then yesterday another surprise: a box of chocolates from Disney and some cocoa sent by Devra in Alaska.. how did they know what to get me? I wonder.
My dad came over yesterday and I tried to explain to him about the pooled income trust I worked out with my attorney because he went to see an attorney about what to do with my part of his will (that is in case he pre-deceases me, which will probably not happen). But anyway, he doesn't want medicaid to eat it all up so he is trying to make provisions. And I am going to try to set up a guarantor trust so that my co-op stays with me and if I sell it I can keep the proceeds or leave it to Tyler, Rianna, and Jenna. I have a conference call with someone in the attorney's office on Wednesday to discuss what I have to do with my Board of Ed pension. I am entitled to a lump-sum payment upon resignation, which I planned to do after my leave is up in November. But they may want me to resign now and collect the money and protect it .. if I resign now, the entire challenge with the Bd of Ed medical insurance will be a moot point. In the meantime, I only have enough rilutek to take me to tomorrow and then I have to discontinue it until I get coverage. I have visions of this disease progressing faster once I go off of it, but I cannot pay $800 a month out of pocket to buy it. After the bathroom, and the lawyer, I am wiped out. I owe about $1500 on my taxes, not to mention the CPA's fees to do the taxes, and no money to pay. So I have to call the tax bureau and the IRS about a payment plan. I have never been so money-less in my life, and I have to have the cleaning lady in for an extra session this week to clean up after the construction, and I hope Stephanie comes this week.. life goes on and I take it one day at a time. I have to go and pet my Penny bunny -- she feels neglected
Saturday, March 19, 2005 8:49 AM CST
When you are a person with ALS, you feel like a non-person. But try living with no way to bathe or shower, and having to wash up in the kitchen sink -- the same sink you do your dishes in. I am thankful for my dishwasher. At least I know my dishes will be sterilized.
My bathroom was ripped out on Monday and it will take at least another 10 days to 2 weeks before I can take a shower like a human being. On Monday, they ripped out the bathtub and put in the shower body on Tuesday. Luckily the inspector came on Thursday. This step can sometimes take a week or two, but I think Wellbrock Plumbing has some connections there. Yesterday, Friday, the cement floor was laid. Now I hope it dries over the weekend, but I noticed water dripping out of my bathroom ceiling last night which is wetting down one part of it. The super said that problem was fixed, but I guess not. Now I have to find him and figure out what is going on. When the cement dries, they have to put down a layer of sand and then build a lead pan. Only when that dries and sets can the tiler come in, lay the tile, then grout. Only when the grout dries can I take a shower.
Debbie Goldstein still has Penny and I really feel like I am imposing even though she says Penny is a pleasure. Penny is playing with the bunny-boy Nickels and the cat Samson. I wonder if she even misses her mommy. I cannot have her in the apartment until it is well cleaned-up. There is junk blowing onto the floor. My feet are filthy and I feel so unclean. I don't even want to go near anybody.
To make matters worse, Stephanie has been showing up at erratic hours. On Monday she called to say she would be a "little late" and instead of arriving at 1, she arrived at 3.On Thursday she was supposed to arrive at 10am and came at 6:30 -- no phone call except in the morning to say would be a "little later" On Friday, I made her promise to come early so the laundry room would be empty.. she showed up at 3:20. I told her I expected her at 10 and she seemed unfazed. I asked her why she hadn't called and she said she forgot. All this is exacerbating the tremendous chaos I feel in my life.
And, on Wednesday God's Love We Deliver never showed up with my food for Wednesday and Thursday . When I called at 3pm, they said very matter-of-factly "Oh there won't be delivery to that area today. Our volunteer didn't show up. Sorry"
I went to an attorney on Tuesday recommended by the ALS Association to handle my assets and put into a trust so I can get on medicaid. It was a wonderful appointment but between the legal fees and the bathroom remodeling, I am now broke. I don't like the feeling. I am beginning to feel very depressed about all of this. And the Board of Ed is still not resolved but someone promised the payroll secretary they would pull my paperwork out of the pile and work on it. I have a tremendous feeling of having no control over anything.. no place to wash up, never knowing when the aid will show up, unsure about my meals, and having mixed feelings about my beloved Penny whom I will eventually have to re-home. Is she in the right home now? Should I offer Debbie the option of adopting her? Will she want to adopt her? Will I feel a bigger void in my life if I give her up?
Saturday, March 12, 2005 9:28 AM CST
Okay, things are moving.. and there are some good news/bad news scenarios going on...
First, my board of ed debacle.. on Tuesday Karen Carter emailed me that my leave of absence has been formally approved. It seems she found a diligent and compassionate man at the board named Arthur Alex who personally walked my form over to the physician on staff and got it signed. The next hurdle is reinstatement onto the medical and drug benefits.The last two days Karen has been calling and the computer system has been down. I think the board of ed server is from the 1980s!! I have about a week left of my rilutek, so there will probably be a gap in my coverage but I can restart it. I have paid $350 out of my own pocket to get 3 months of baclofen filled, because that drug actually improves my quality of life and cannot be stopped suddenly without some dire side-effects. And the drug plan gave me my paxil for some unknown reason, so i am okay with that. The physical and occupational therapists at the ALS Association told me to stay on medicare at least until I get my wheelchair and aud-comm device because medicaid is very stingy with those.
I have an appointment with the eldercare lawyer on Tuesday. Louise took the day off work to come with me so she can help communicate, or just to lend moral support.
And the bathroom: the workers are coming Monday to rip out the bathtub and start putting in the floor for the shower. Desiree gave me access to her apt so I can take a shower but I am bringing Stephanie in with me to help me in and out and to bring the shower bench in for me. As for Penny, a hardship turned into a blessing! Louise was supposed to bring her to Catnip and Carrots for boarding while the work is being done, but she has to fly to Chicago on Sunday for a work emergency. So I contacted Debbie Goldstein who once came over to clip Penny's nails, and not only did she offer to transport Penny but she wants Penny to stay at her house! She sadly lost her bunny Cosette a couple of weeks ago and her boy bunny Nickels is lonely, and Debbie is looking for another bunny to care for for a while!! She has an x-pen with plenty of room and she will see how Penny and Nickels get along.
So, things are looking up but here is the most disappointing news of all: I owe a bunch of money on my income tax because of the IRA I liquidated last year. I think around $1500 between the IRS and the state..oh well, thank god I have it but I thought I would get a load of money back due to almost $6000 out-of-pocket medical expenses..It's only money....
I have to pay the attorney $590 for initial consultation but I hear they are very good and in the long run I need the advice to protect my most valuable asset -- the co-op.. more later...
Have a good weekend everybunny...
Sunday, March 6, 2005 8:50 PM CST
Just a quick note to say that I had a wonderful weekend. On Saturday Haley and Tyler came over with Dad (Dad was fairly well-behaved -- he took his coat off but the hat stayed on)
Haley and I went out with my scooter to the bank and it was nice getting out. She also brought me a big bag of goodies from my favorite place -- Trader Joe's
Then today Louise and Lawry came over and we went to Louise's house for dinner. It was a beautiful day weatherwise. I am getting a lot better with the scooter getting it in and out of the elevator -- took me long enough!!
I am going to follow up with the contractor tomorrow to see when the work on my bathroom will be started and will check with the Board of Ed once again to see about my insurance coverage. I am at the end of my rilutek and I am torn about whether or not to get a month's supply and in the meantime apply for a grant thru NORD (National Organization of Rare Diseases) to get them to subsidize me for the rilutek, which is about $800 a month. That would mean I would have to lay out that much this month. I could use a good Lotto winning. Maybe I will buy a ticket tomorrow!!
Monday, February 28, 2005 5:24 PM CST
First of all, I just went to the door and it was the UPS man with a box from GODIVA!!!!!! My bunny-rescue friend from Pleasant Valley, Stacey Wogalter, sent me biscuits, cocoa, and coffee .. how can someone better please this chocoholic??? Thank you Stace, for thinking of me and pleasing my sweet-tooth too!! What a sweet (!) thing to do!!
Talking of sweet things, Louise put up with me for the whole day on Saturday . we took Access-a-Ride to see the "Gates" in Central Park.. I posted a picture in the photos section. Just don't look at that tired-looking creature on the scooter.. I must go back to wearing eye makeup so I look like I have eyes rather than slits..
We had a debacle at a bathroom in the Plaza.. the employee told us it was accessible, so I got my scooter in but almost didn't get it out.!! We finally found the accessible (well only really semi-accessible) one and almost couldn't get the scooter out of that one. Once again, I need a real motorized wheelchair, which brings me to my Board of Dread status. I am now on "Leave Pending Medical Approval".. what the hell does this mean? The secretary told me to wait a week and she will check again.. the "pending approval" is something I don't like the sound of.. I hate them!!!
Till next time
Friday, February 25, 2005 2:41 PM CST
I am excited because Louise and I are taking the access-a-ride tomorrow to Central Park to see "The Gates". I hear it is awesome. But the real point is that this is what I really needed. I can no longer just drive into Manhattan myself and walk miles and miles anymore so when Louise suggested this, it was the perfect answer to everybody's comment "Let me know if there is something I can do for you" . I have Stephanie to do my errands (except for a couple of fill-ins in between) and Christina to do my heavy cleaning. But I need to still feel that I am part of the world.
When I see events on tv now, the immediate thought that comes to my mind is "I will never be able to do that". Sure I could have taken the access a ride by myself and rode my scooter through Central Park by myself, but it means so much more when someone else asks me to share in the experience.
I would like to take one more trip before I die or get totally quadriplegic. I don't know where, or when, or if it will happen, but I want to do it. But in the meantime, I want to still enjoy New York. If I am still able when the warm weather comes, I want to go to the museums and ride my scooter down the waterfront, and go all the places I used to go.
The ALS Association sent me a Dynawrite™ speaking machine.. I type and it speaks.. I am fooling around with it now. If my medical insurance ever gets straightened out, I wil get my Mercury™ machine which is much nicer. I got a call from Helen Hayes Hospital yesterday and they want me to come up again for another eval on my Mercury™.. I told her I don't know how I am going to make it up there again. Last time Louise was good enough to take the day off and take me, but it is not something I can ask someone to do again. But she volunteered again!! And they want me to have my wheelchair eval there too at the same time so that they can fit the Mercury™ with a wheelchair bracket.. But then I need to go up there once again!! I tell you they don't make it easy, although the Helen Hayes is top notch and the people are the best !! Sent two emails to Tashira Edward at the District about my medical benefits, and no reply!! I hate the Board of Ed!!
Tues, Feb 22, 2005 11:36 AM I have had better days
The building porter just came in for his every-other-day re-tacking of the garbage bag covering the opening in my bathroom ceiling. I am very angry and frustrated. I got into the shower yesterday but had a hell of a time getting myself out. It is just too dangerous. And another person cannot even help me. My left leg stiffens up and I cannot get it over the rim. But I cannot get the tub-to-shower conversion done until the bathroom ceiling is fixed. And this cannot be done until the owner of the apt upstairs fixes the floor with the crack in it. The renter in the apt upstairs isn't inconvenienced; there is no damage to her apt. My super contacted the owner and he keeps promising to send someone over.. in the meantime, I cannot afford a lawyer to sue him and by the time it goes to court, I could be dead..So I sent an email to Rachlin Management and I don't know if that will do any good.
I also sent an email to Tamika Edward at the Bd of Ed to please take care of my insurance situation. I am running out of medication and am facing out-of-pocket pharmacy costs. I am also trying to decide if I should go ahead with the wheelchair evaluation and the speaking machine at a 20% cost to me. These things are out of my control and they are making me angry.
It isn't like I can just go to the gym or a neighbor to take a shower like the old days. So I have some stuff called "no-rinse" to give myself a sponge bath, but how to wash my hair.. that is my next hurdle. Maybe Stephanie can help with that.
I feel so gross that I don't have the desire to do anything but crawl into bed. I am so at the mercy of these people and it makes me feel helpless! I also have developed a pain that shoots down my back; I understand this is common with ALS.. this too shall pass.. hopefully
Sunday, February 20, 2005 1:24 PM CST
I should clarify for those of you who read these pages and don't know me well.. Penny is a little gray bunny rabbit. When I talk about litter boxes I guess everyone assumes I am talking about a cat. I will post a picture of Penny on here soon
It is supposed to snow again tonight.. not a big snowstorm but about 6 inches. My neighbor Lisa just came by to get my ATM card so she can withdraw cash for me to pay the aid and the cleaning lady.
The garbage bag and duct tape started to come down and the super came by to tack it up again. My bathroom looks like those news reports that expose living conditions in the South Bronx. The people upstairs have to fix the floor and they are also responsible for fixing the damage in my bathroom too. That means that the remodeling job in my bathroom has to be on hold for a while. It seems everything is on hold. Because of the medical insurance snafu, the wheelchair and the speaking device are also on hold..
Lisa was the only human being I have seen since Stephanie left on Friday. Until the warmer weather comes in, I have not been going out with the scooter.. and during the week, I am happy just to see Stephanie, the meal delivery person from God's Love We Deliver, and the UPS man. It gets very lonely around here at times. I just read about a woman with ALS who has 40 friends who have rallied together to form a support system for her. They take turns keeping her company and doing things for her so that she never feels alone. I wonder how special this woman could be that she has 40 friends willing to pitch in!! I wish I had 5; I am lucky to have the three or four I have. But people are busy and we don't always get to see them. and of course, I have had friends, colleagues and lots of acquaintances that I have not heard from since I got in this condition. Some have come to see me and never returned. I know it is a hard thing to handle, but maybe I never made solid friendships. I just heard Dr Phil on tv say "to have a friend, you have to be a friend".. Maybe I wasn't a friend to enough people.. or maybe I looked for the wrong qualities in my friends.Either way, I am grateful for the ones I do have who are still sticking around. I can't imagine having 40 friends caring about you though.. that woman is surely blessed..
Saturday, February 19, 2005 9:34 AM CST
Well it is a long weekend and if I were still teaching, I would be starting a well-deserved week off from school.
I am behind in my work on my Barnes and Noble online courses so I think I am going to catch up on my reading.
There is snow in the forecast for Sunday night. I bet the kids are angry that they don't get a "snow day" off from school.
The other night I had a disaster when I answered the phone while I was eating dinner. I began to say hello and didn't realize I had food in my mouth and starting coughing which led to choking and i couldn't tell my sister on the other end that I was okay but I needed to catch my breath and call her back. So she got all panicky and thought I was going to choke to death. I managed to get out "I'm okay" when my dad got on the line, but in the meantime, I spilled some coke on my area rug, the phone had gotten all tangled in my nighttable drawer (the cordless was on the cradle recharging)..
What did I learn from this ? Better to let the machine pick up and call back. Just as I am writing this, the phone rang and it was on my cart-walker away from me. I got to the phone when I could, and of course the caller didn't leave a msg.. some 585 area code I didn't recognize so it was probably a garbage call..
I moved Penny's litter box out of the bathroom to eliminate the step of moving the box when I have to take a shower. She is a little confused and left some poopy balls there anyway, but I guess she will get adjusted after a while.
My life is a series of adjustments...
Wednesday, February 16, 2005 11:17 AM CST
Okay another case of "just what I don't need".. my bathroom ceiling right above the tub has been leaking.. sometimes a drop every second and at other times, it almost seems like it's raining in my bathroom. Well the other day I had to wear a shower cap to protect my head from the drip while I was washing my body.
This has happened before and my old super used to tell me I was imagining it. Well the new super was stumped because none of the pipes seemed to be leaking. Today he found that there is a crack in the floor of the old lady upstairs so the landlord (she is renting from the sponsor) has to have her floor replaced.
In the meantime, my ceiling is removed and I have a wonderful
scenic view of the inside of the ceiling. They are coming later to tape it because my biggest fear is that some critter living up there will jump on my head..So now I am anxiously awaiting the plumber to start my big work -- removing the tub and putting in the stall shower. As the late Gilda Radner (as Roseanne Roseannadanna) would say "it's always something
Tuesday, February 15, 2005 6:43 PM CST
Well it was 60 degrees today and I was planning to go out on my scooter but time just ran away from me. I still haven't mastered getting that thing out of the elevator.
When I was out with Tyler on Saturday he bought a rose for a girl at school for Valentine's Day yesterday.. he is such a sweetheart. I am so proud of him and of Rianna and Jenna, my nieces. They're great kids
Sunday Louise came over and brought me an ottoman that Lawry had.. an animal print suede with great legs.. It is soo cool.. I can sit on my chair now and put my feet up.
I ordered some new toys from Dynamic Living .. two different kinds of reachers and a device that you put the toilet paper in and it reaches back to wipe. sounds like such a basic thing but it is hard to reach.
Sunday, February 13, 2005 10:35 AM CST
Yesterday was a pleasant day, albeit exhausting.
Dad came over with Tyler .. and they had flowers from the family for Valentine's Day (gorgeous) and a nice care package from Trader Joe's with some of my favorite things to eat. I miss not being able to go to TJs..
Well once Tyler and I convinced Dad to take off his hat and coat and "stay for a while" , Tyler helped me get the scooter ready and we went for a walk (while I rode) and I went to mail my missing form to the Bd of Ed and get my cash out for the week (for groceries and to pay Stephanie), and lunch at Ben's !! Well the kid who never ate wanted everything on the menu!! Tyler said the next time he comes he is going to order the chicken breast and fries and he was marvelling at the chicken in the pot and the sandwiches!! He said he is 100 lbs now!!
Anyway I had a big bowl of matzoh ball soup with noodles which caused an embarrassing situation when I got home. I had an incontinence accident.. all over the bathroom floor and all over my jeans. Okay, I have two males in my living room and I had to take my bottoms off and wipe the floor.. They must have been wondering what I was doing in there for so long . I couldn't walk out and put my undies and pad on, which I usually do on the bed. Thank goodness for long sweaters. I was wearing a sweater down to my knees and walked out and thankfully they were getting ready to leave. I don't even think they noticed I had no pants on!! Oh what tribulations I have just in daily living!! Anyway, I think Dad would have dropped off the flowers and the food and left if not for Tyler and I finally convincing him to go to Ben's.. he wanted to get chicken soup for me, bring it in and then leave! But Tyler really wanted to visit with me.. I was glad he did!! The only thing is that we have to keep his visit a secret from the girls.
Friday, February 11, 2005 1:37 PM CST
Okay.. I don't have a good picture of myself.. I may add a picture of me from before and I also may add pictures of the family.. give me time guys
by the way, I am taking a course on Barnes and Noble University on writing poetry.. as you all know, I am an award-winning author.. LOL.. recently I won $10 in the Oxbow Hay essay contest.. hey I am an author and I won an award - so that makes me an award-winning author, okay? So I have written poetry from time to time and now I am going to take a class on poetry writing.
My aid, Stephanie, also turned me on to a website where HP gives computer courses for free.. Hey, it's cold out and it's a pain sometimes to recharge the scooter and take it out so I am keeping busy. I am also going to watch some of my Webflix movies this weekend.. I have Mystic River, Vanilla Sky, and Monsieur Ibrahim. I already watched The Station Agent, and Frida..
and I bought Gangs of New York and Catch Me If You Can..
I also want to buy A Tree Grows in Brooklyn.. by the way, I hear that is a new musical on Broadway!! My favorite book of all times.. I want Rianna to read it when she is up for it.. and, by the way, Rianna expressed an interest in composing a family tree, which I am going to help her with.. maybe we can sneak into Poppa's house and steal some old pictures.. maybe Rianna and I can actually make a website.. till next time
Friday, February 11, 2005 8:12 AM CST
thank you everyone for viewing my page and thank you Haley for adding me to "share the love"..
update on my insurance and the lovely Dept of Ed .. as some of you know, they cut off my insurance due to being on an "unauthorized leave".. that sounds terrible, right? Kind of like I am AWOL from the armed services.
Well, God bless Karen Carter at the Educational Complex at JHS 99!! Her persistence in contacting people and trying to get to the bottom of this mess, paid off.
Despite her asking the district if I needed some form called an OP 160 (you don't know how many forms I have filled out and sent out to the ALS Assoc to complete), now they say I am lacking that form - - the OP160! So Karen is mailing it to me today and hopefully I will be able to complete this by next week and be reinstated..
This time, I will make sure Karen follows up and calls the district afterwards to make sure that this is corrected!! One would think that the district would have called to say I was missing this form, but NOOOOO.. with the Dept of Ed, the saying "one would think" had to leave my lexicon.. .what "one would think" is not what the Dept of Ed would think.. As my dear friend Louise once told me in her many words of wisdom to me "Fern, don't try to apply logic to illogical people!"
Now let's keep our fingers and toes crossed that I can reinstate my processes to obtain my motorized wheelchair and aud-comm (speaking) device.. Have a good weekend everyone.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Thursday, March 22, 2007
Posted by Fern Ellen Cohen at 7:51 PM
Labels: ALS, bureaucracy, healthcare, homecare, NYC
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