Wednesday, December 26, 2007

New Year

I’ve been through a very weird two weeks. First I was broadsided by a crisis with one of my aides. It was about something the new “fill-in” aide said that was totally twisted around and led to one aide thinking I betrayed her. She threatened to walk out and I had to have a long “talk” with the fill-in aide, which isn’t easy when you have to type out everything and your hands get tired. And it is virtually impossible to talk over an angry aide who is raising her voice. It would have been a daunting task for a healthy person, but for me, it was just too overwhelming. I had a day-long crying jag, and at times I had trouble with my breathing. But it’s blown over for now, and I really hope it stays that way, because that stress is something I don’t need.

The bright side: some awesome gifts from friends near and far. I had Christmas dinner with the family yesterday and got more nice gifts. I gave giftcards to the kids, and I filled the tip envelopes for the aides and the building staff with what money I have managed to put aside this year from eBay sales and surveys, etc. So I need to raise money if I am ever going to have a renovation, and a shower and hair-washing again. I am trying to find all kinds of ways to make cash here and there. I’m sure this will never happen, but at least I have a goal, because G-d knows all the dreams I had last year at this time are shot to hell.

So I have my eye on a new prize: I am going to do anything to accumulate cash for new rugs, a paint job, and a renovation. I am glad the stress of Christmas is over. I am grateful to be here another year.

Last Saturday, I had a visit from the nurse at Consortium hospice. We both decided that I am not ready to sign a DNR because I can still fight an infection. Somewhere in this misery I find the strength to keep living. I still think I can make a difference, Maybe I am still delusional. I think that I have learned to accept this life a little longer while I can still write. As depressed as I get, there are still bright spots. The attorney who handled my apartment sale sent me an invoice for $840.00. For months I have been staring at it and wondering what I should do about it. Finally, I bit the bullet and sent him an email telling him that I would have to pay in $50 increments. He wrote back and told me to forget it. It’s nice to see some people have a heart.

Thursday, December 6, 2007

Dusting Off My Boots

I am going to try to get through the day from now on, and count my blessings. I am not going to expect anyone to bring me along with them anywhere. Most people feel uncomfortable with disability and it isn’t their fault. Our society values beauty, athleticism, and strength. We do nothing to teach our children to deal with differences, especially in appearance.

My life can’t get better, so I have to deal with what is now. If there were a grant to modify my apartment, someone would have found it by now. As usual, I am chasing something that doesn’t exist. My goals have to be simple – clean out the apartment from all the stuff I have been “meaning” to sell on eBay. I will read books I have been “meaning” to read. I will stay where I am; I have no strength to move. And when it gets impossible to be cared for at home, I will go to a facility.

I will continue to write, but I don’t think I will publish a book. I don’t know what I was thinking when I thought I could actually sell a book! I don’t know what I was thinking when I thought I would move to Manhattan; I don’t know how I thought I could ever do something like that..

There is a part of me that imagines people laughing at me, thinking “well, yeah…….helloooooo”. Well, go ahead and laugh. I had dreams. They gave me something to obsess about and, okay, waste time and energy. So now I am getting up and dusting myself off. I read about people who raise money with the help of friends and associates. Okay, so that won’t happen here. I hear of people who have formed “Share the Care” groups, and think “hey, I can do that!. Well, I guess I can’t.

My aides are employees; they are not friends, and probably shouldn’t be. They come in, do their hobs, and go back to their lives. They don’t want to go out with me; they don’t want to go out to eat with me; they have their own people to hang out with. They sit near me and talk on cell-phones and text message people in their own lives.

I do have things to look forward to. I can’t wait for Sunday at 8 [The Amazing Race] or the third Tuesday of the month [Beth Israel ALS support group] or the first Monday [MDA/ALS support group. I look for an email from a frien when I open my computer each day, but don’t expect a visit or an invitation to anyone’s house. People promised to take me here, there, and everywhere. They didn’t realize how hard it would be, and neither did I. And yet, it’s actually easier than people think, for me to get around, and it doesn’t take much to entertain me. But they don’t know to find out if a venue is handicap-accessible. Or maybe they are afraid that, if they give a little, I would be thirsty for more. Or maybe they just don’t have the patience or time, like my friend at Dunkin Donuts, for someone who takes twice as long to do anything.

It’s not my fault that I got this, but it’s not their faults either. They have enough stress to deal with, and want a relaxing afternoon or evening. They don’t need someone around that they have to worry about.

All this does not mean that I love the situation. My apartment still stinks. It’s small and it’s dark. My mini-blinds are filthy, and the blind in the kitchen is broken. I haven’t had the urge to change them. My neighborhood still makes me feel as if I am in some foreign country. I am still isolated. I still can’t get into the kitchen or the bathroom. But that’s the way it will be for a long, time, and maybe for the rest of my life.

Monday, December 3, 2007


On Saturday afternoon, a friend I have known on and off for about 20+ years, came so we could go to Dunkin Donuts. It was about 2:30 by the time Ellita got my coat and scarf on, and my Mercury talking machine mounted on my wheelchair. She left to do some shopping because she likes me to have privacy with my friends. My friend let me know that she had to leave by 4, to go down to Macy’s, and then she had an appointment to get her hair blown out before she went out for the evenng. Okay, I was grateful that she found time in her busy schedule to spend some time.

Let me relate the events and tell how it feels to be in my position. I am not trying to be ungrateful, but I am definitely the first friend she ever had to get ALS, so she doesn’t realize how it feels to be me.; most people don’t. I hear that it’s kind of similar when a friend gets cancer, although I have the added accoutrements of wheelchair, diminished hand dexterity, and inability to speak. But I’m hoping someone will read this and know a little bit more of what to do/not do with a friend who gets a disabling disease. In fact, I hope with all these entries, someone somewhere learns how to comfort a sick friend. It’s too late for me; I’ve scared everyone away already. But, chances are that we will all have a friend with whom we will have to deal, with cancer, AIDS,MS, Parkinson’s , or any host of diseases in this age of treatments and cures that help sick people live loner.

So we get to Dunkin Donuts. I want to order a chai tea and a donut. I can do this; I have done it before. I have a miniature version of my Magna Doodle that I keep in my purse. I write “chai tea latte and gingerbread donut”. Te clerk nods; no problem. He is perfectly comfortable with it and so am I. My friend yells “Go to the table” I go to take out my money. I am slow, but I can do it. The clerk is patient, as I find most counter people in my neighborhood to be. My friend is noticeably agitated. She orders me again to go to the table and insists on paying. I feel this is a little infantilizing and then I remember that everybody always wants to pay, and it feels weird. So I go to the table, and she helps me get the straw in the chai tea, which ids help I always need.

So I remark that I haven’t seen her since the spring and wondered where she was all summer.

“Oh, I went to Long Beach so many times on the Long Island railroad with [she mentions another friend]
I say “this was the first summer I never saw the ocean. I really miss the beach”
“Oh, it was so nice. Too bad you can’t go anymore”
“But the LIRR is totally accessible and there are matted paths on the beach now for people in wheelchairs”
“Okay so next summer, you should pick yourself up and go with the aide”
She didn’t get it. Aides are emp;oyees; they’re not friends. When the do their twelve-hour shift, they go home to their own friends and family.
She gets up and puts on her coat. She is afraid of being late for Macy’s, or maybe the conversation was too difficult.. I am not finished with my chai tea, but she is standing over me and pointing to her watch.

I am grateful that I got to go out and be in the world, but I wish everyone realized that trains, beaches, theaters, many restaurants, cinemas, etc are all accessible since the Americans With Disabilities Act was passed more than 15 years ago But they are nt comfortable with taking me along. Maybe it’s the talking machine and how long it takes for me to do thins, like pay. Maybe they feel they have to pay my way, which they don’t have to do. Whatever it is, it is. If just one person reads this and remembers it for that time when she finds out that a friend or family member is disabled, by a stroke or other illness, then I’ve done my job.

I try to be grateful for one thing a day. This week I am grateful for a Chanukah surprise from my high school friend Marjie, to Louise for coming to do this month’s bills. I am also grateful my brother-in-law Claude did the four-way trip to pick me up to take me to Thanksgiving dinner at his and my sister’s house, where I got to see the kids. And for Ellita who got a fifth aide, Keter, in my care rotation. So now we have more flexibility if someone gets sick, or goes away. And, yes, I am grateful to the friend who took me to Dunkin Donuts, even if she didn’t take me along to the beach this summer.

Friday, November 23, 2007

Reality Check!

Reality check!!!! The estimates for this remodeling are coming in at about $6500.00, which is a good $5500 more than I have put aside. One look at my finances revealed that I can’t spend any more money that I don’t have; my monthly charges are higher than they should be already. I have to explore ways to raise funds, and this is all stressing me out, as if ALS wasm’t stress enough. I’ve cancelled Netflix and I just cancelled my audible.com membership. I am trying to figure out what other corners I can cut. I am going to resign from NYC Metblogging this morning, because it is getting harder and harder to write about the city when I can hardly get out anymore. And if I am feeling overwhelmed, I fully empathize with the people out there who have jobs, children, etc. I am totally understanding why people just can’t come around anymore.

My eBay stuff isn’t selling as well as I thought it would. My energy level is going down, down, down. And two of my aides in particular are burning out; and even if they admitted they’ve had enough and want to leave, it would be too difficult to orientate a new person or two. It is I who have to do the training, since there is nobody who is here often enough to know the daily routine. And that is exhausting for me, especially since I can’t speak. Everybody is sick of emptying the portable commode and giving sponge baths. And I still have not found a good way to wash my hair. The dry shampoos and “no rinse” shampoo caps make my hair look like straw. And the local salons want from $30-$40 for a shampoo and blow-dry (nobody just does a shampoo). Inquiries at several local salons showed me that the $32 I paid for the shampoo/blow-dry last month was in the ballpark.

So I don’t see life getting better for a while, if at all. And by “better life”, I mean the luxury of a shower and shampoo!! As much as the aides wash me down well, I never feel really clean. I have been researching government grants, but have come up with nothing. I thought I had something last week through United Cerebral Palsy, but found out it doesn’t apply to Queens. I feel so drained and hopeless.

I went to Haley’s house for Thanksgiving. It was so good to see the family again. But I found myself very emotional when it was time to leave. I could not bring my bi-pap because it was too much for Ellita to carry with maneuvering the manual wheelchair. My dad is still struggling with colitis and the bladder cancer. I should be helping HIM out. I should be doing “aunt” things with the kids. I should not be the one who has to be cared for. I think that was the reason for the tears.

Wednesday, November 14, 2007

RIP Roberto, You're So Vain (You Probably Think This Blog Is About You)

We lost Roberto this morning. He had been intubated and it was time to remove the tube, so he chose not to go on mechanical ventilation. The choice of whether or not to have a tracheotomy and live with mechanical ventilation is the decision ALS patients all have to make well before it becomes an emergency issue. I will really miss Roberto. He and his sisters were a big comfort to me. His sister Rachel was his main caregiver until a few months ago when he got home care through hospice. Rachel and Roberto’s other sister Ivette regularly attended both of my monthly support groups. I hope I still get to see them. I am waiting to find out when and where the wake/funeral is.

I had a contractor here yesterday. I liked him and I was excited about having him do the work. But this morning he emailed me, and I realized that he wasn’t planning to take down the wall going into the bathroom, and I need that down so I can get on the other side of the pipe to reach the toilet, and so I can have better access to the refrigerator. Suddenly I’m frustrated again. The contractor who was supposed to call me on Monday, finally called tonight. He’s coming Saturday for an estimate. When it rains, it pours. I just can’t wait to get a little dignity back, with a shower, a shampoo, and even a little food prep. Basic stuff.

I am just so tired of getting emails where people judge me because I write about the emotions that go with this disease. Just because I mourn the things I have lost, it doesn’t mean that I don’t appreciate what I have. When I say that I feel lonely and isolated, it doesn’t mean that everybody needs to send me emails about how they are thinking of me and praying for me. I don’t need to be told that I sound too angry and the anger and frustration may not make for a pleasant read. Nobody twists their arms to read this. They can choose not to. I KNOW there are people worse off than I, children with cancer, people dying. Because I mourn the ability to get in my car and drive, or to talk on the phone, it doesn’t mean that I a not thankful that I can use my hands, for now anyway. I don’t know why everybody thinks I am talking about THEM. “I know you were talking about me in your blog when you said nobody comes to visit. You made me look bad…….etc etc” Feelings are feelings, ALS or no ALS. If I’m angry, I am allowing myself to be angry, disappointed, frustrated. It doesn’t mean I am like that all the time. But sitting here with my aide, TV, and laptop in a studio apartment, where I can’t get into my own bathroom and kitchen doesn’t cheer me up either. Andrea Bryant is coming on Saturday, so I’m looking forward to that.

Anyway, I am totally bummed out about Roberto. But, at the same time, I am blessed to have known him. Evidently, he had a lot of friends, who came to visit him until the end. He was always grateful for that. I’m sure I will meet them all at the funeral.

Sunday, November 11, 2007

National Caregivers Month


November is National Caregiver Month! So I am going to talk about caregivers, because the focus is always on the patient, and caregivers are our “unsung heroes”

But first, I ask everybody to keep David Deutsch and Roberto Rosado in your prayers

David was the recipient of an award at this year’s Wings Over Wall Street fundraiser. He was a teacher at Northport High School before ALS. He is in Stony Brook University Hospital with acute pancreatitis.

Roberto has become a good friend, and a big inspiration to me. If you watched the Jerry Lewis MDA Telethon last year, you might have caught Roberto and his two sisters profiled. Roberto was a recipient of an award at Wings a few years ago. He is in Lenox Hill Hospital.

Three women who were also great comforts to me online, have passed on. Edith, RuthAnn, and Cookie were on my “Living with ALS” yahoo group. In some of my darkest moments, their love came through in powerful emails. I am especially sad about Cookie, whom I had the pleasure to meet in person in DC. I am still in shock over her death because when I saw her in May she had traveled with a friend, and was managing with minimal help. A month later, she wrote to me, excited about the wheelchair van her husband bought for her. She was driving herself! And in July she took a cruise. She was full of life and in DC in May, she was talking perfectly!

It is always very difficult for me when another ALS patient dies, but even harder to take when someone dies who was diagnosed the same time as I was, or later. Both Cookie and RuthAnn lived with ALS about as long as I have. But the end can come suddenly, with an infection or, more commonly, with pneumonia. Of course this is true for anybody. So I am reminded all the time how we have to cherish each day, and appreciate the people we lovem because we can lose them in a minute.

Back to caregivers

Giving care to me, and other ALS patients, seems the ultimate in thankless work. Even though I have paid caregivers, the pay is pitiful. I bought each of my caregivers some nice bodywash to commemorate National Caregivers Month, because it was all I could afford. But I wish I could do more. My caregivers do everything for me, right down to the most personal tasks. It can’t possibly be gratifying, either monetarily or spiritually. And especially since I became unable to get in my bathroom to shower or toilet, and can’t even get into my kitchen to get a snack, they have had to work extra hard. I am lucky because I was able to qualify for Medicaid, which covers aides 24/7. I made up my mind at the beginning that I didn’t want to burden family, who have their own lives to manage. I have always been so independent. Few people know what a huge burden it is to care for an ALS patient. I also didn’t want to go to a nursing home until I absolutely had to. So I did what was necessary to qualify for this coverage. When I look at exhausted caregivers at my support groups, I am happy I went this route.

And, by the way, my discussion here does not only apply to ALS. Many of us will be faced with the care of an elderly parent some day. Many people are already in that position.

Not everybody qualifies for, or wants to do the “spend-down” to qualify for Medicaid. Medicare does not provide for round-the-clock home care, and most private insurance does not, either. And, a fact I just recently learned – long-term care insurance, which is very expensive, will not cover certain illnesses. I met a man recently who paid through the nose for this insurance while he was young and healthy. When he was diagnosed with ALS, he went to activate his benefit, only to find out his policy didn’t cover neurological diseases! If the patient doesn’t qualify for Medicaid, the burden of care falls on a spouse, parent, child, significant other, or close friend. Medicare will only pay for home care if the patient is also receiving a skilled service, such as physical therapy, occupational therapy, or wound care. Those skilled services are usually only for a limited period of a few weeks, and the home aide is usually only authorized for 2-4 hours a day, 2-5 days a week. The exception is hospice aka palliative care for which the patient must be expected to only have six months or less, to live. Hospice will provide home care for 6 hours a day, as well as visits from a doctor, a nurse, a social worker, and a member of the appropriate clergy. The only caveat here: hospice will not pay for equipment such as wheelchair, ventilators, or cough-assist. So the patient has to make sure s/he has all that before getting hospice services.

More often than not, the burden of care falls on the family, I have seen some arrangements whereby a close friend is a caregiver, but this is rare. There is also something called a “share the care” group, in which a team can be formed to split up the care of a patient. This is rare too, and only works if the patient has a very large social network, or belongs to a tight-knit religious community. Family caregivers really suffer. I see spouses of PALS who can’t even go for a salon appointment or just for a relaxing walk or social event, because they cannot leave the patient, I have a friend in New Jersey whose husband is a severely-disabled stroke survivor, and whose parents are both ill. In order for her to go to help out her parents, she has to dress her husband and load him in her van to take him with her. She can’t leave him in the house alone. There is a married couple in my support group – P. and S. P.’s ALS has affected his upper body and he has no use of his hands. Luckily, S. can speak, so he has a program on his computer called “Dragon Naturally Speaking”. This is a voice-to-text program, so he speaks and the computer types. It is the reverse of my Mercury, which speaks what I type. But S. can’t wipe his nose or feed himself. So P. doesn’t want to leave him alone. Lately she has hired an aide out-of-pocket to be with S., and she can finally get out for a few hours a day for “me” time.

“Respite care” or relief of the caregiver is extremely important. One of the nicest things you can do for a caregiver, is to offer to sit with the patient for a while, so that the caregiver can relax. If the caregiver is exhausted, sick, angry, or resentful, s/he is no good to the patient, If the burden of care falls on one member of the family, as it usually does, the other family members, or friends, should provide respite care to relieve the caregiver whenever possible.

And lastly, let me say that “care” is not only personal care of a patient. Beyond bathing, dressing, toileting, and cooking, there are other ways to “care” for a patient. Depending on the abilities of the patient, you can take him/her out for coffee, bring a DVD to watch together, read to him/her, or just sit and talk over a cup of tea. So many people freeze up when a friend or family member gets sick. “I don’t know what to do/say”, they think, especially when the disease is devastating. But little things go a long way. And, when that patient has an unpaid caregiver, a visit can mean the world to that family member or friend who finally has the chance to have some “me” time. If you know someone who is taking care of a loved one, do what you can to brighten their day. If you can offer to visit with the patient for a couple of hours, this would not only give the patient some pleasure, but would give respite to the caregiver. Or maybe offer to do some housework, bring a meal, or watch any young children that may be in the house. Caregivers need care too.

Thursday, November 1, 2007

I am trying to find a contractor for the renovation. If anyone knows a contractor s/he can recommend, send it on. They have to have all NYC licenses. I have the plan drawn out by Antoinette of the ALS Association.

I always get a little melancholy this time of year. I didn’t even put the “Trick or Treaters Welcome” sign on my door and didn’t buy candy. Just couldn’t get into it this year. Some mornings I can’t wait to get out of bed because I have so much to do, and other mornings I think “why bother”. Sometimes I value what little solitude I have, like when the aides go to do the laundry or shopping. And other times, I am agonizingly lonely and count the days to my next support group meeting or my next visit from my Jewish Federation volunteer. Sometimes I can live in the moment, and other times I worry – about whatever holiday is coming and whether I will have to go through it alone, about bills that need to be paid, about the “what ifs”, or sometimes I create something to worry about. Or even worse, I obsess about the “shoulda”, “coulda”, and “woulda”. I am now thoroughly convinced that if I had sold the apartment and moved to an expensive rentals, I would have been consumed by thoughts of “when the money runs out….”. When you own a house, condo or co-op, it’s hard to give up the “owner” mentality and become a renter, especially when the monthly payout of mortgage and maintenance is a lot less than rent, even in this area. It was probably a fantasy I was living out, and I guess I needed to go through it., and get it out of my system.

Twelve years ago, my mom died on October 29, and she was buried on Halloween, which happened to be her favorite holiday. So I get very melancholy this time of year. It always seems like everybody is having a lot more fun than I am. I am finally getting my rubber stamps and other craft supplies that I don’t use for sale on
eBay. I need to get rid of the stuff to make some room, and I also need to raise funds for the renovation.

Every once in a while, I get an unexpected surprise. Two of my former students sent emails. One did a search and found my blog, and the other found me on classmates.com, where I am listed as a faculty member for the
Academy of Environmental Science in Manhattan.

Saturday, October 27, 2007

Emotional Lability AKA Pseudobulbar Affect

EMOTIONAL LABILITY aka “pseudobulbar affect” is actually a neurological symptom of ALS. It is uncontrollable fits of crying or laughing. Sometimes the laughing comes after the crying or vice-versa. Or sometimes there is just laughing, or just crying. It can be embarrassing, because sometimes it is inappropriate. But once it starts, it is so difficult to stop. It can be scary too, because it is something you have no control over.

When I get on a crying jag, I sob really loudly and then my breathing suffers. Prolonged laughing is healthier, but it affects my breathing if I can’t stop.

There is medicine, which helps. Mine is a liquid compound of quinidine and dextromethorphan, which is found in most over-the-counter cough medicines. My neurologist says that nobody knows why or how it works. This statement puzzles me because I don’t know how they discover a drug if they don’t know why or how it works. Oh well; however they found it, I’m glad it’s around.

Michael Zaslow, the soap-opera actor who died a few years ago of ALS describes this symptom at length in his book “Not That Man Anymore”. He talks of long and embarrassing episodes of crying, and of laughing in inappropriate situations. It had to be so puzzling to everybody around him to see a man blubbering for no apparent reason, especially since he was out in public so much. There is a very good discussion of emotional lability in Wikipedia at http://en.wikipedia.org/wiki/Emotional_lability
“While not as profoundly disabling as the physical symptoms of these diseases, labile affect can have a significant impact on individuals' social functioning and their relationships with others. In a disease such as Motor Neuron Disease, the majority of patients are cognitively normal; however, the appearance of uncontrollable emotions is commonly associated with learning disabilities. This may lead to severe embarrassment and avoidance of social interactions for the patient, which in turn has an impact on their coping mechanisms and their careers.”

Anyway, just another thing we people with ALS deal with.

Friday, October 19, 2007

flashback 2003

So I have not touched a biology textbook since 9th grade, when I was 13 – I was in the honors track so I took Biology a year ahead, and I skipped a year in elementary school so I was a year young for my grade. That was 39 years ago. And I am on the research committee of Ride for Life, responsible, with about 10 others, to decide where the research funds are going. And, toward that end, Norma is forwarding a bunch of articles on cells, neurons, and viruses. I have learned that there is a subset of viruses called “prions”, which are similar to proteins. Some of the researchers think that prions might be a culprit that causes ALS.

Let’s flash back to 2003. Evidently, it was in the summer of 2003 that I noticed that something was very wrong, even though I had been treated for asthma a good ten years before, had a clumsy accident in 1993 and broke a toe, had another stupid accident in 1998 that resulted in a nasty sprained ankle, and started wearing a mouth guard in 1991 for jaw stiffness which the dentist figured was due to clenching and grinding my teeth at night. But in the spring/summer of 2003, strange things happened way too often. It didn’t take as long as some others to diagnose me. In the end, I diagnosed myself. You see, doctors don’t like to give this diagnosis because they like to be able to offer hope—a pill, a medicine, a surgery, a change of diet or lifestyle, chemotherapy, physical therapy, any therapy, radiation, or any other treatment.

I made it very simple for Dr. Rubin at Weill=Cornell. I had done my research on the internet, so I said “I have ALS”, and he responded with “Let’s hope not. Call me in two weeks when we get the results of the blood tests. Hopefully, something will come back positive, and we’ll find out you have something else.” ‘

“I hope we don’t find out I have something worse”, I said
“There is nothing worse than ALS”, he answered.

In the next two weeks, I tortured myself. I read everything about ALS. I read how there was no cure and no effective treatment. In the 150 years since ALS first identified in France, and in the 60 years since Yankee Lou Gehrig was diagnosed, they have only come out with one drug – rilutek—and that is supposed to have minimal effect.

I was in my school’s computer lab two weeks later. It was January Regents Exam week, so we weren’t teaching; we were proctoring exams, and I was on one of those long breaks between proctoring assignments. I called Dr. Rubin and got the bad news over the phone., despite the fact that doctor’s are advised, I learned later, to never give bad news like this any way other than face-to-face. My blood tests came back negative – negative for autoimmune disease, negative for Lyme Disease, and negative for anything else it might have been. I didn’t have anything better than ALS. The doctor told me to call Dr. Mitsumoto’s office at Columbia to “get into a drug trial”. His parting words to me were “good luck to you”. I remember going into that combination mode of shock mixed with “let’s forge ahead and see what I have to do”, There were other teachers in the computer lab who knew that I had just come off an important phone call, so I turned to them and said “I have a fatal illness. I’m going to be in a wheelchair and then die”, before I walked out.

I went into my classroom and called Haley. She called back a little while later and said she had called the ALS Association. I guess there is a certain amount of denial that kicks in. You make phone calls, you go on the internet, you do anything you can. The inevitable is not an option at that point. So when, a year later, I had the bathroom renovated, the tub was pulled out and a shower stall put in, but one day I knew I would not be able to get into the bathroom because I would be totally wheelchair-dependent, and a wheelchair wouldn’t fit. On to renovation #2.

Monday, October 8, 2007

Walk to D'Feet and Apartment Renovation

Antoinette submitted her three designs for the apartment renovation. I am so glad she came, because I would never have known that the floor in the bathroom is slightly higher than the floor in the kitchen, so the flooring needs to be done. That means a contractor, and it also means board approval. I am going to have to get estimates. The guy who did my previous renovation – taking out the tub and putting in a stall shower—will be one of the ones I call. But it’s hard to know who else is honest. I have to ask around. I will have to send Chelsea to board, because she can’t be here with all the banging. And, depending on whether my bathroom will be out of service, I may have to go somewhere too; or at least I have to arrange for my aides to be able to use another bathroom. So I don’t know what I will do. Knocking down walls will create a lot of dust, but I may have to deal with that.

Money is another hurdle. I think a home-equity line of credit will be the way to go, and at the same time, I can consolidate some of the old debt that has been looming over my head, and making it tough to hold onto the $720.00 a month that Medicaid allows me to keep every month.. So this might end up to be a good turn of events in more ways than one.

A last trip into the shower on Thursday was a disaster. It made Lynette late for her day job, since she didn’t want to leave Ellita alone to get me out of the bathroom. So, I really can’t go in there anymore. Sponge-bathing is permanent, until I get the bathroom modified. Since hair-cleaning is an issue I had to order a dry shampoo online. Not the way I wanted to live, but I have no choice. I have had no desire to do much, and I think I am just very depressed. Just a few months ago, I was full of hope to improve my situation, and now reality comes to slap me in the face. I am extremely self-conscious about not being able to take a proper shower and shampoo my hair. When I have to sit on the portable commode in the middle of my living room, it depresses me. And now I am again at the mercy of six people who can hold up, and even stop, any renovation. I don’t know how in God’s name I am going to deal with contractors when I can’t speak, and I am scared as hell that they will take me for a ride because I am disabled and defenseless.

Anyway, it was in this spirit that I had to attend the Walk to D’Feet ALS last Sunday. But I had a good team, which consisted of Ellita, Lynette, Debby and Andrew Wolfe, Cassie the dog, Louise, Haley, Claude, Tyler, Rianna and her friend Darie, Jenna, Gino and Donna and their daughter Regina, Michelle and her friend, Michael, Flo, Judy, and Jane. The weather could not have been more perfect, since we are having a weird September and October; as I write this on October 7, it is 79 degrees at 5:37pm! So it was a great afternoon at the park. After we all got back to Queens, Debby, Andrew, Jane, Ellita, Lynette, and I regrouped at the local App;eby’s for dinner; an appropriate choice, since they were a sponsor at the Walk, and provided the hotdogs afterwards.

Monday was my appointment at the ALS clinic at Beth Israel. Dr. Scelsa said I am an unusual case because I progressed rather quickly at the beginning and I am settling into a plateau. He see no change in strength since my last visit in June. So that is good news. The PT suggested that I get an athletic ankle support at a sporting goods store, to stabilize my ankle during transfers. I f that doesn’t do the trick, I can try leg braces. Other than that, the visit was uneventful. I.ater, Louise redeemed her auction prize from Wings Over Wall Street. It was for fish and chips at “A Salt and Battery” and then high tea at “Tea and Sympathy”, both down in the West Village, my old stomping ground (from when I did my masters degree at NYU, studied acting at HB Studios, and then took craft classes at The Ink Pad). So, aside from great food, it was a nostalgic trip down memory lane for me.

Friday, September 28, 2007

We Can't Go Back and Change the Past

There is a new TV series called “Journeyman” You can read my review at http://www.associatedcontent.com/article/395381/fall_tv_journeyman.html. The subject of time travel has always been a passion of mine. And it is not for the science-fiction aspect of time travel; it is because I love history, and I would love to have been around in the early 1900s, and I would love to go back to the 1960s as a more mature adult, rather than a child and pre-teen who really couldn’t go out on my own and be a groupie. But I think the reason time travel is so appealing is that we would all like to go back to the past with today’s wisdom. Then we could change the outcome of the present and the future.

But, since we can’t do that, we have to live from our mistakes and errors in judgment. Hopefully, we learn from the past. When we don’t, we repeat destructive patterns. We can live in a world of “shoulda’, coulda’, woulda’” , or we can dust ourselves off and move on. I have thrown out so many things in the past few months to remind me of money spent on frivolous things, or delusions I had. I took acting classes and performed in community theater and had headshots taken with the delusion that I would do it professionally one day. I took art classes to unleash my creativity. I unleashed it, but I don’t even want to think of the money I spent on classes and supplies, and time. I was looking for pleasure outside of myself.

And my latest delusion – that I could find a “better life” if I moved out of here. I learned that selling a co-op and moving were more than I could handle. I got another offer this week, and turned it down. In fact, I took the apartment off the market and Antoinette, the technology expert (and a degreed engineer) at the ALS Association, came over to assess my situation. I will have to have the good part of a wall removed, but it’s do-able. I can make the bathroom and kitchen accessible. I will pay the super to do the work; but the board could stand in my way once again, because they have to approve the work. However, I have grounds to exert rights if they prevent me from alterations for accessibility. With the apartment sale, I was up against a brick wall, and I couldn’t fight it. In the fall newsletter of the building, there is a statement, which goes something like this “although ________ Management [which manages this building] is also a real estate agency, this has no bearing in the board’s decision to approve a buyer. All applications are reviewed equally, and decisions made without building management present”.

So there it was. Hiring the management company as my realtor would not give me an advantage; they could keep rejecting applicants. I couldn’t put myself through that again; it was too stressful, and my ALS has gotten worse in the past few months. And the moving! Sure I had people who said they would help, but in the end, the burden falls on me; people have their own stuff to take care of.

So now is the time to fix up my living space and make it “home”, because my next move, if there is even a next move at all, will probably be to a hospice residence. And again, if I knew then what I know now, I wouldn’t have wasted the last nine months trying to sell this place, not to mention a $35 charge to the building for each open house (there were 6), and exhausting trips (4 of those) to look at rentals. That is time I can never get back.

Monday, September 24, 2007

please read my article about the reality show "Kid Nation"
Here's the link
you can access all my articles there.

Still moving toward holding on to my apartment. After all, it's a good investment and I have equity. I could remove the wall between the kitchen and bathroom, and put in a moveable partition. It's worth it. I think moving will stress me out. And if I live three more years, I could run out of money. Makes me nervous. Now, how to break this to the realtor, and deal with the board, who may not approve any modifications....another story

Sunday, September 23, 2007

dirty hair

I watched a TV show last night called “Kid Nation” about 40 children between the ages of 8 and 14 who were dropped off on the middle of a ghost town with no running water.

Although I do have running water in my house, I can’t get to it. So my day aide has to run back and forth with basins of water to wash me. Very nineteenth century!!! And here is the disgusting part: I have not been able to wash my hair since my salon appointment over a week ago. So Ellita and I set off for the salon yesterday. It started to rain, so we had to turn back. We have rescheduled for today, and I will literally go nuts if we don’t get there.

Well, as I write this, my hair-washing plans have just been trashed. The elevator has broken on my side of the building, and I have to get to the basement in order to get out to the salon. We have no idea when it will be repaired, since it’s Sunday. It is so frustrating to know I live on the ground floor, but I still can’t get out to do a basic thing like get my hair washed.

Friday, September 21, 2007

filthy hair

I am looking at the possibility of reconstructing my apartment for better accessibility, since I am so totally disgusted with this sales process, and I don’t know if this board will ever approve a buyer, when I do find another one. A woman from the open house a couple of weeks ago, made a lowball offer. I asked the realtor to negotiate her up in price, but I haven’t heard from him.

I am so totally exhausted, and my breathing is getting worse, and I don’t feel as if I will survive the turmoil of a move at this point. I have loads of people who have offered to help, but I have no reason to believe anyone will be able to come through. Lives all seem so crazy these days.

So I am thinking of renovating, which would also have to be approved by my board. But I feel I will be more capable of a legal fight if they try to stop me, because I think if I were trying to do construction to make the apartment accessible, I would have the right to fight them.

Of course, there is the issue of where I am going to find the money for such a job. I seem to remember that there are organizations that have grants for this kind of thing. The work has to be done by a licensed contractor, and all licenses and plans have to be approved by the board. When I had my tub removed and the stall shower installed, it was a long process – a few months, in fact.

In the meantime, since my fall a week ago Thursday, I have not been in my bathroom. This means sponge-baths for 9 days now. My hair was washed at the salon last Saturday, when I had it cut and colored. But tomorrow will be a week of no hair-washing. This is the longest I have ever gone without washing my hair in my entire life. I feel terrible, and the hair is starting to smell. I can’t get close enough to a sink to wash it. So tomorrow, I have to get to a salon. It’s Yom Kippur, but I have lost all Jewish identity with this disease. Even if I wanted to go to a local temple, I don’t see an accessible entrance on any of them.

All I keep thinking of at this moment is my filthy hair, and a body that hasn’t been properly showered in 9 days, and may never again see a shower if I don’t move, or get my apartment fixed up, both of which would take months anyway. I never dreamed that my needs could ever be so basic and primitive.

Friday, September 14, 2007


Yesterday morning, Lynette was able to get me into the bathroom, but when I had a problem making the turn into the shower, I suggested she wash me down while I sat on the toilet. But she was insistent that I should get into the shower. She helped me, and I got in, but I could tell that I was weak. So, when it came time to get out, my ankle twisted and my feet gave way. Somehow, I lost me balance and my handhold on the sink let loose, and I fell into the shower so fast that Lynette couldn’t catch me. At that point, Ellita had walked in, so they both got me up and on the toilet. I was totally exhausted, but eventually we got me out of the bathroom. It’s clear now – no more bathroom. If I am strong enough to get in, there’s no guarantee that I will get out. This morning, Lynette gave me a bed bath, but I couldn’t breathe while I was lying down. And it was so difficult to turn me over, and harder still for me to hold on to stay turned over. Then, I had trouble loosening up to bend my knees to get up off the bed. We are going to have to bring the Hoyer lift up from the basement.

It is so difficult to tend to me now. I feel the aides are really beginning to feel the strain, and one of them seems angry and moody. I have stopped asking her if she is okay, because she just nods her head. I never know if she is unhappy with the work, or me, or something that has nothing to do with me—something from her personal life that she has carried to work with her. All I know is that I don’t like to ask for anything when she is like that. I have expressed to a few people that I feel “shut in” and they tell me to go out to the store with my aide. But when we are out, she walks behind me talking on her cell phone. So I stay inside, because there isn’t even a place to sit outside near my building.

The new realtor brought a woman over yesterday who had seen the apartment during the open house on Sunday. She came with a tape measure. So she is very interested. But then there are those six board members. As if I needed another reminder that my life is not my own, I have to hope that those six board members don’t reject her too, forcing me to stay in a world of bed baths and asking for snacks from the kitchen like a three-year-old. And maybe I had better lay off the snacks anyway and lose some weight so I can be moved.

I joined a group online yesterday to support Barack Obama for president. But then Carol Creamer reminded me that he is not a great friend of the middle class. I don’t feel that I belong to the middle-class anymore. I am definitely a member of a disenfranchised underclass right now, but it was the disregard for the middle class that put me there. So, yes, I still see the need to advocate for the middle class. This leads me back to Hillary, although I don’t think she would give a hoot about my situation. On the surface, I am well cared-for, and my basic needs are taken care of, even though my spirit is destroyed.

Wednesday, September 12, 2007


I had the first “open house” with the new realtor/management company. So far, no firm offers, so I am resigned to being here for a while. In the meantime, I may have to do more to make it all look presentable. Like finally getting rid of the desk, and getting wireless set up here so that I am not confined to this one desk. I

In the effort to make life somewhat tolerable, we have instituted new strategies. First a new morning routine. Now, the night aide wakes me at 6:00am to get me out of bed and into my wheelchair, We hve also raised the bed to make it easier for me to get out of it. Then, slowly and carefully, we get me into the bathroom and, hopefully into the shower. If not, the aide sponges me down outside the shower. At about 6:45 the day aide comes. So for about 15 minutes, I have two aides to get me out of the bathroom, when I am most exhausted.

If I don’t find a buyer for the apartment this fall, I probably won’t find one until spring. So I am operating as if I am staying at least another 6 months. And, most of all, I have to pray that my feet don’t totally give out and/or I don’t become totally bed-bound.

I am also operating on the assumption that I will be alone with myself at least until the spring. There is literally nothing to do in my immediate area, no real parks and certainly no pretty places to sit outside. So I am finding things to occupy my time solitarily. If I am going to be stuck inside I am aiming to write more o my book and scan more photos. I am trying to get through an on-line course in Photoshop Elements, and I am getting totally frustrated!!! I wish I could get myself to a class, but I don’t see that happening.

And IO am conflicted about what world I belong in. My two monthly ALS support groups are my social life, but I also want to go places where I am not just about ALS. My mind and my intellect still need stimulation, and I still appreciate art and beauty.

We lost two people in the ALS community this week. Both people had reached the point where they just couldn’t take it anymore, and refused nutrition. I will miss them both, but I am glad they were able to choose when it was time to go,

Wednesday, September 5, 2007


Before I post this, let me give a disclaimer. I appreciate everything everybody has done for me. Yes, I know there are people out there worse off than I – children with cancer, people dealing with ALS who have small children at home. And, finally, I acknowledge that people have lives, that the world owes me nothing, and that it is nobody’s fault that I have ALS. So I am just going to express what I feel. It is not directed to anyone in particular.

I am finding the need to reinvent myself. Due to Louise’s driving, and an aide accompanying, I was able to go to a Fourth of July party and a post-ride celebration. But, aside from those two afternoons, I have been stuck inside this apartment. Summer came, and summer went. This was the first summer of my life that I never saw the beach or the ocean. I don’t fit into normal society anymore. Despite everybody’s well meaning offers to come and get me out, to the beach, the park, the museum, it isn’t going to happen. So I have had to discover solitary activities: learning digital scrapbooking, reading, TV shows, etc. I am trying to find ways to get to the movies and other activities, without depending on the friends from my past.

That said, it was all the more frustrating this summer because I am hating this apartment, and this building. When I went to work every day, and came home at night, it was tolerable. Now that I am stuck inside, it is maddening. When I get out to go to the ATM or the grocery, I am reminded again how all the Americans are moving out and how Russian this neighborhood is. It hurts to know that 6 board members, my neighbors, hold my destiny in their hands. They decide whether or not I can move out. Two of them know me for the 23 years I have lived here. When I sat on the board, and even before when I was healthy, my neighbors stopped me in the hall, the elevator, in front of the building to to talk. I listened to their problems, exchanged stories with many fellow teachers who lived here, and fielded their complaints as a board member. Now, some of them look down when I pass, or talk to my aide about me, while I am sitting there. And now, six of them could give a rat’s ass tat I need a more appropriate place to live. There is some secret reason they rejected my applicant, a doctor with excellent financials. I don’t know why, and they refuse to tell me. I have hired the building manager as my realtor, and I hope that helps. Maybe he knows more of what this board wants. Maybe it will be more difficult to reject a buyer that he presents. I can only hope. This whole thing has been a mystery to me.

So I am finishing up a chapter in my book, which will NOT be about ALS. I have no heroic feats to write about – I am not brave or heroic. If writing has anything to do with my ALS, it is that ALS has forced me to stay still enough o finally write things down. I still feel lonely and sad, and hope soon I will have a bathroom I can get into easily, and a kitchen where I can get MY OWN snack, or my own cup of tea. And, most of all, I hope to find peace within myself and with myself, because someone in my condition can’t make new friends, and I can’t socialize any more with the “normal” world.

A friend who has been battling cancer asked me recently how I can stand going to my monthly support group. “I want to go places where nobody knows I have cancer”, he told me. I explained that I can’t do that, that the ALS community has become my social life because I can’t move in normal circles anymore. I can’t hide my ALS; it’s out there in everybody’s faces, and it causes fear, discomfort, and even disgust. I wanted to make him a tee-shirt that says “I have cancer” and dare him to wear it for one day, to see if the world doesn’t suddenly treat him differently. I wish I could walk around in a world that doesn’t know I’m different.

Friday, August 31, 2007

Co-op board woes, still

I can’t remember the last time I felt so despondent, frustrated, and just plain powerless. I will never know why the co-op board rejected my buyer. He is a doctor with a six-figure salary and a debt-to-income ratio of 15%. I had to let go of the Roosevelt Island apartment. It had been so hard to find a landlord who would take me with my only income being my disability check. I was close to a beautiful apartment about three weeks ago, and I didn’t get past the final approval. So I was ecstatic that this building would work with me.

So now I am back to square one, showing the apartment all over again. My realtor is going to re-submit the buyer’s application with additional assets this week. But I don’t know what my board wants. They are not obligated to tell me either. My email to the board members re-explaining my situation, and asking for their help in telling me what they are looking for, was ignored. I have lived in this building for 23 years, and these are my neighbors!

For someone in my condition, there are even more complications with going to stay somewhere else temporarily. If I went to the family out of NYC, the bureaucracy involved with getting my case transferred, would be a mess. By the time it was straightened out, I would probably have the apartment sold, and ready to come back. And I would lose my CD-PAP (consumer-directed care plan), and the aides with whom I have an established relationship. They would all get different jobs while I was away, and I probably would not get them back. Ditto for the social worker’s suggestion that I go to a nursing home for “respite care”. Not to mention that other people’s homes aren’t modified for accessibility, and NOBODY KNOWS how disruptive the presence of an ALS patient is in the home.

So I met yesterday with the real estate division of the company that manages my building. Maybe they can find a buyer more “suitable”, that the board will approve. Maybe they are in te “inside track” and can figure out what this board, who rejected my buyer without even an interview, wants. And it seems that I can get into the bathroom and/or shower every few days or so; on the other days, I get sponge-bathed. As this disease progresses, I begin to accept things that, just a few months ago, were unacceptable to me. Like bathing outside the bathroom, or sitting on a portable commode. Things I am happy no one ever told me would happen. Things I would never have imagined I would think are normal and okay.

Sunday, August 26, 2007

Co-op Sales Woes

ferncohen.comSunday, August 26, 2007 7:51 AM CDT

I've had a terrible blow.
After nine months of open houses, viewings, and numerous measures to make this apartment more attractive to buyers-- not to mention a couple of price-drops, we finally found the perfect buyer. He is a physician, single, excellent credit, and very low debt-to-income ratio. My realtor, Tim of Citi-Habitats

It had also been a long road to find a suitable apartment. There too, Tim and Peter from Citi-Habitats had some frustrations. So imagine my relief when we found the perfect apartment in Roosevelt Island, where everything is wheelchair-friendly-- it was purposely designed that way! As far as I was concerned, this was a disabled person's utopia!!!

About the same time we found this place, my buyer submitted his application package to my co-op board. A few days later Tim received an email from my management company, the language of which indicated that my buyer had been approved.
Excitedly, I arranged for the lease-signing on Roosevelt Island.

I was literally sitting in the Access-a-Ride van to sign the lease, when Tim called my cell phone to say that he called the management company for something, and was told that my buyer was rejected the night before, with no interview!

We are all baffled. Furthermore, Tim and my attorney have called the office, and their calls have not been returned. I am told that the board does not have to give a reason for the denial, but we would like to know if there is something we can do to make the application more desirable. Since they did not interview him, it's not about liking or disliking the person.

I am crushed. I don't even know if Tim is willing to stay involved. This management company, who came on board with the building after I contracted with Citi-Habitats, has their own real estate agency. We are not obligated to use them, but if I had known this service existed at the beginning, I would have used them.

Tim told me that he was cool if I wanted to turn it over to them to sell, because he knows that I have no time to fool around. I sent an email to the management and the co-op board saying that I really needed their help. I explained what they already know: that I have a serious fatal, and disabling disease, which has made this apartment difficult for me. I further explained that I could no longer get into my kitchen or bathroom safely, and needed to sell the apartment to enable me to move to a more suitable place. I asked for their cooperation in telling me what I could do to market the apartment better, and even offered to drop my present broker and use them, even though it meant that all the work the broker did for the last nine months would have been for nothing.

Despite the fact, that the building manager has not returned our calls in the last couple of days, he responded quickly to my last email, from his Blackberry no less.

He said he would contact me Monday to "let you know how we can assist you" I will hear what he has to say, but I will have someone with me who can also listen, and take notes. However, Tim wants another stab at presenting the buyer, and I think he should have that courtesy. Therefore, I am not going anywhere right now. Sponge-baths and portable commode will be part of my life a little longer.

Friday, August 17, 2007


In thinking about changes and adjustments with ALS, I am reminded of a story I heard on the radio about 15 years ago while I was driving around Atlanta during a sales-blitz for my then-employer Cayman Airways. At the time, I roared with laughter, but I don’t find it so amusing anymore. The radio guy was talking about Walter Hudson, a 1200-pound man in Hempstead, Long Island. Hudson had gained so much weight that he was eventually confined to his bed. Before that, he worked, until one day he couldn’t fit through the bedroom door to leave. Well, the radio DJ said “I’m trying to imagine what happened the day Walter Hudson realized he wouldn’t make it to work that day because he couldn’t get through the door…..hmmmm…….let’s all imagine the phone call ‘Hey, this is Walter. I’m calling to say that I’m not coming to work today. I’m calling in fat!”

I don’t find it so funny anymore. One day I had to call up my school and tell them I wasn’t going to make it to work anymore. Not because I didn’t fit out the door anymore. I couldn’t make it to wor anymore because my school wasn’t accessible and it wasn’t safe anymore to fold up my walker, have someone help me up the two flights of steps—one outside and one inside—just to get into the school building. Once inside, there was no elevator, so I couldn’t get up to the third floor where the classrooms were. My principal sent me classes of students to the auditorium, with 10 textbooks for 60 students. So when it was obvious the Department of Ed was not going to find an accessible school for me, I had it. So you could say I called in “fed up” or “resigned to the illness”.

And so it is with ALS. One day you can; the next day you can’t. If ALS affords us any luxury, it is the luxury of gradual change. The slower the progression, the longer you have to adjust to each change. At the ALS clinic, they tell you to always prepare for the worst-case scenario, which is bound to come sooner or later. Because of the time it takes to get equipment, you order the wheelchair while you can still walk, and the augmentative speaking device, or “aug-comm” while you can still speak. Between the first evaluation, through the paperwork and approval by Medicare, to final delivery, can be several months. In my case, it took a year to get my wheelchair. Since I needed one before I got my own, I had to take advantage of the ALS loan closet.

There is a threshold you cross, that reminds you the disease is progressing. One day your voice is a little too nasal, on another day, you sound drunk. Until one day, too many people are not understanding a word that comes out of your mouth. One day you are walking with a cane; the next day you are falling way too much. You graduate to a walker, until one day, you can’t get down one block. And finally, you can’t even stand on your own. It is difficult to plan for that “worst-case scenario”, because you can’t imagine it ever happening. But it does; it always does.

Thursday, August 9, 2007

Do Unto Others


A few days ago, the widow whose husband’s funeral I attended, came to my door. She thanked me for coming, I asked her how she was doing, and with her voice cracking, she said she wasn’t doing so well. She thanked me for expressing concern, and then said “If there is anything I can do to help you, please let me know.”

Maybe it’s a good thing I can’t speak, because I wanted to say “that would have been nice to hear three years ago”. Of course, I won’t call on her, because by now I have adjusted to not expecting anything from anybody. But if I showed her I can be a good neighbor, and if it made her think for one moment about helping someone who could use a little help, then I did some good by going to her husband’s funeral.

In these times of air-conditioning, computers, and cell phones, we tend to forget the importance of face-to-face and person-to-person contact. It is so easy to get wrapped up in our own little worlds, and forget about that sick person, that elderly person, that widow or widower who is left alone after the death of a spouse.

I am guilty of this too. I wish I had looked in on my elderly neighbors when I had the strength to do so. One of the reasons I attended my neighbor’s funeral was that I felt it was the right thing to do. And now that the mourning period is over, and the visitors have stopped coming, I’m sure Mrs. G. is going to go through a painful depression.

So I thought I would take this opportunity to enlighten those who never know what to do, or what to say. I can only speak for someone in my situation, but a lot can apply to your friends, relatives and neighbors with cancer, MS, or any chronic illness, or to anyone who lost someone through death. Sometimes all you need to do is bring some food, dessert, or beverage, and watch TV or a DVD, go to a nearby park, or store. I know, in my case, I don’t need anybody to bring me groceries anymore, since I have aides round the clock, but an elderly neighbor might be very grateful for that, especially in nasty weather.

Sometimes, your neighbor doesn’t need someone to run errands. Sometimes, your neighbor or friend wants to have some company for a little while. Aides and nurses are not friends, and they don’t take the place of a social life. I know that I am very grateful when a friend comes to watch a DVD with me. In my case, and in the case of anyone who really can’t go places alone, a trip to see a movie is golden. When possible, take your friend for a stroll on a boardwalk, or just to a park. We chronically-ill people tend to stay to ourselves inside when we don’t have anywhere to go, like to the doctor’s office. I make a weekly trip to see a therapist in Manhattan. Most weeks, that is my only outing, This is the first summer in my entire life that I have not seen the ocean. I look forward to my two support groups a month; it is when I get to see my friends in the ALS community. That is my time to share about my ALS.

The rest of the time, I am not my disease. Some people want or need to talk about the illness, the surgery, the cancer. But there is a person inside, and I get my “ALS fix” at my support groups. Otherwise, I watch TV, follow politics and current events, and love to look at art and photography. Jody from the ALS Association met me at PS1 Museum a few weeks ago, and we had a great time. I didn’t talk about my ALS, although I can’t hide the fact that I have it. And unfortunately ALS is not pretty, and makes other people nervous and uncomfortable.

Tuesday, July 31, 2007

My Neighbor's Big Fat Soap Opera Funeral


My Neighbor’s Big Fat Jewish Soap Opera Funeral

Now normally I would not write about some funeral attended. But this one had a certain significance, both because of its soap opera quality and because of the many lessons to be learned from it.

I am going to use initials and pseudonyms only because I don’t want anyone googling the deceased husband and finding this story. So here goes.

Mr. and Mrs. G have lived in my building for about thirty years. They had one daughter J. who had virtually grown up under our noses. I have to say in all honesty that I don’t think that I have said more than three words to any of them in the twenty-three years I have been living here because they really were not very friendly and I never knew if they had something against me, or they thought their poop did not stink, or they were just plain introverted. But I guess with so many other neighbors and my own life, it was not important enough to try to find out, Fast forward to three years and my fight to make the building put an automatic door for handicapped accessibility, which I only won with the help of the NYC Commission on Human Rights, twenty-one months later. There are people who look at something like this and view it as an unnecessary expense to only benefit one resident, never thinking it could be them at some point. As it turns out, there are other residents of the building who are thankful that the automatic door is there because they use walkers and wheelchairs. It takes one persistent big-mouth like me.

So fast forward to our annual Christmas party r annual Christmas party, last December. Instead of taking place in the lobby, as was customary, it was in the basement board room. As a by-product of my battle, the building now has to make every building event accessible to all. Well within earshot of Ellita and me, Mrs. G. asks the board president why the party isn’t in the lobby and the board president nods over in my direction and tells her the venue had to be changed because of accessibility, and Mrs G. looks in my direction and scrunches up her nose. And they continued to turn their noses up when they ran into me.

So when there was a sign posted in the hallway that Mr. G suddenly died of a heart attack, and gave details of the funeral I must admit that my first reaction was “oh well” .
But then I thought it would be a nice gesture to go. So we booked the Access-a-ride van to the funeral I home, which was on the other side of Forest Hills, and off we went on Sunday morning. There were only six other neighbors there, which surprised me because Mr. and Mrs. G have lived in the building for thirty years. However a lot of the old-timers have either died or moved to Florida.

I think everyone was a little shocked to see me there and the widow said that she really appreciated my coming. We watched everybody pay their respects and then we filed into the chapel. There, beside the casket, the rabbi gave his benediction and turned the microphone to the widow Mrs G, who gave a very emotional and moving about her deceased husband. She told of how he was a “renaissance man”, how he loved the fine arts, music, and good books. She went on to speak about the deep love and admiration they had for one another, what a devoted husband and dedicated father he was, and how she would normally be spending Sunday morning eating scones and reading the New York Times. Lastly, she said how much she would miss this wonderful man, with whom she was – in her words – “joined at the hip”.

Then the daughter gave her speech about her devoted father who was not only loving to his wife, but always there to love and support his daughter. We were left with a warm feeling about a man who seemed to be the perfect family man, if not the friendliest neighbor,

Now, the whole time we were listening to these eulogies, we noticed a group of about twenty people sitting all together near the back of the chapel, away from everybody else. and in front of us. At the end of the daughter’s speech, one of the women in the group in front of me rose and walked up to the front. She asked for the microphone and I noticed a small altercation, and then I heard the mystery woman say “I’m his daughter too”.

She introduced herself as “R;’s first daughter” and pointed to the group sitting toward the back. She continued to introduce her husband, four other siblings and their spouses and children. She ended by saying “I wanted you all to meet us, because we are all R’s family too. We are the children and the grandchildren that R hasn’t bothered to contact in twenty-five years

You can imagine the shock around the chapel. I was even more shocked by the rabbi, who concluded the service with a final blessing and announcement of the burial and address of the shiva, which would be observed by, in his words” C. and R. ‘s only daughter, J. “

Sice I don’t mingle much anymore with the neighbors, and there is nowhere to sit by my building, I have really heard no commentary. I am sure there is more to this story, but I thought it was a great reminder that the past can come back to haunt us. Furthermore we can have friends and neighbors we think we know, but they can have all kinds of skeletons in their closets. And lasly, someone can seem like a perfect saint, and be anything but.

Friday, July 20, 2007

Apt search

Some dreams have to die. My dream of living in Manhattan has to be shelved, for now anyway. I went apartment hunting and saw apartments the size of walk-in closets for $2500 a month. I didn’t realize how good I have it, spacewise. So I will look in this same area for a retal, while putting myself on waiting lists for HUD and subsidized apartments in the city. Especially in a wheelchair, I need space, plus a kitchen and bathroom I can get the chair into.

If anyone has leads in the Forest Hills area, please send them my way.

Thursday, July 19, 2007

WOO-HOO Our Efforts in DC Realized--ALS Registry Act Passes

I am pleased to attach an e-mail I just received from the ALS Association
And I am proud to have been a part of this:

House Subcommittee Passes ALS Registry Act

We are extremely pleased to report that this morning, the House Energy and Commerce Committee Subcommittee on Health unanimously passed the ALS Registry Act (HR 2295). The bill is now cleared to move forward in the House and next will head to the full Energy and Commerce Committee. This is a tremendous victory and is one of the most critical steps in the legislative process, as most bills introduced in Congress never make it “through Subcommittee.”

During this morning’s session, Subcommittee Members repeatedly stressed the importance of establishing a national ALS registry in the fight for a treatment and cure and spoke of the personal connections many have developed with family and constituents who have been touched by the disease. Members also praised the efforts of The ALS Association and advocates for helping to lead the fight for the bill and for our continued outreach to Congress over the past two years. Since the ALS Registry Act did not specify funding levels for the registry beyond Fiscal Year 2008, the Subcommittee also agreed to authorize $16 million per year in FY 2009-2012 in addition to $25 million in Fiscal Year 2008.

The Subcommittee’s action reflects the strong bipartisan support generated by ALS Association Chapters and advocates from across the country. A total of 261 House Members – well over a majority – have signed on in support of the bill! The Advocacy Department will continue to work closely with the Committee as the bill moves forward.

In the meantime, it is important that Chapters and advocates continue to focus outreach on the Senate. Although we are now closer than ever before to passing the ALS Registry Act, we need to build additional support in the Senate. Currently nearly 40 Senators have cosponsored the ALS Registry Act (S. 1382) and we encourage Chapters and advocates to contact their Senators to ask them to cosponsor this critical bill.

Sample letters you can send to your Senators are available in the Advocacy Action Center of our website, here. A list of those Senators who have and have not cosponsored the bill also can be found in the Advocacy Action Center here.

Thank you to everyone who has contacted their Members of Congress. Your outreach is making a difference! We need you to continue to stay involved in our efforts and together we can pass the ALS Registry Act this year!

If you have any questions or would like additional information, please contact the Advocacy Department at advocacy@alsa-national.org or 1-877-444-ALSA.

Friday, July 13, 2007

Ok, first of all I am fine, and then some. But now I have even more reason to be infuriated at North Shore Forest Hell!!! And the Executive Director Robert Hettenbach, with whom I have already been in touch, will hear from me again.

Preparing for the event of a possible total tube-change, I arrived at Beth Israel’s Endoscopy unit with Ellita schlepping my bi-pap, in the event that I would have to “go under”, an event which frightened me to no end. It is risky for anyone to go under anesthesia; anesthesiologists are among the specialists who pay the ighest malpractice insurance premiums. And for a person with a FVC (forced vital capacity) of about 18%, it is especially risky.

And I had been instructed not to eat after breakfast. So it was 2:00pm and I hadn’t had anything since my Carnation Instant Breakfast at 8:30am. So I was very hungry.

Jody Wiesel, my friend and ALSA volunteer was there to meet me, along with Teresa Imperato, nurse extraordinaire from the ALS Clinic. I told them how much it meant for me to see them there. Jody said “You’re too important to us, for us not to be here”.

So Teresa tells me not to register but instead to lift my shirt and let her see the tube. I tell her it was leaking at the end, she brings me to Frank, the Physician’s Assistant, and asks if he has a cap for my tube. He has hundreds. In iteraaly less than three minutes, he tells me there is nothing wrong with the tube, snips off the end, puts on a new cap, and I am done! So the upshot is that Teresa has access to Frank’s supply of PEG caps, which she knows how to put on. Therefore, if it happens again, I only need to go to the ALS clinic, and Teresa will fix it for me. Ditto to anybody who reads this with a PEG tube; you only need to call the clinic; if it is a cap replacement, Teresa can do it. This makes me want to go to North Shore Forest Hills and scream.

So now we had 3 and-a-half hours until our access-a-ride pickup. We had lunch – I was starving—and then Ellita had her toenails done, while Jody and I explored the neighborhood around Stuyvesant Town/Peter Cooper Village, which has gone really upscale.

Thursday, July 12, 2007


Finally got through to Dr. Cohen after his stupid office took 2 days to call and then told me the doctor would call back, which he didn't.

I have to go to Beth Israel's endoscopy unit tomorrow to have my PEG tube changed. I am a little nervous because I may have to be put under, which is risky with my breathing. I just hope everything goes okay

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Tuesday, July 10, 2007

bathing woes with ALS

It is amazing what you can get used to if you really have to. Today is my third day in a row getting spomge-bathed. Not too bad, and I am just as clean. But what to do about the hair. I am going to have to go to a local salon and get a shampoo and blow-dry. I am supposed to go to the kickoff party for the Long Island Walk to D’Feet ALS on Wednesday night, so I want to look halfway-decent for that.

I was able to get into the bathroom this morning but I couldn’t make the turn to get into the shower. It involves a pivot-turn on my right foot while holding on to the sink, and then swinging my lleft foot around. If the right foot starts to turn before I get the left foot around, it’s all over. Then the ankle turns and I am standing on a twisted foot, and starts to swell up, I get fatigued and out of breath, and it only gets progressively worse. I tried three times and then I gave up. I didn’t want to get so fatigued that I wouldn’t have the strength to get out of the bathroom or, worse yet, fall and break a bone(s).

I am trying to get my gastroenterologist on the phone to make an appointment this week.
And I am also trying to find out from Home Medical Equipment if my bed can be fixed, or if Medicare bought it, in which case I will have to pay for repair. After 2 years Medicare purchases equipment so then the repairs become the patient’s responsibility.
I slept in the recliner last night and woke up with no backache, which I can’t say for my nights in the hospital bed. Maybe I should just sleep in the recliner from now on—that hospital bed has never been comfortable!

Warren stopped by last night to pick up my I-Mac manual because he is going to put my old desktop on eBay. Saturday, Ellita and I met Jody at PS1(Museum of Contemporary Art). I could actually live in Long Island City—great neighborhood resurgence and magnificent views of Manhattan. I may just take a field trip over there and look around. I could hang out at Gantry Park on the water and shop at Costco……worth a look.

My mercury problem is still looming, and my rep is on vacation. Thank goodness for ALSA and the loan closet!!!!! I also told the attorney that I would feel more comfortable sitting with him and going over the contracts before I sign. They amended the erroneous selling price of the original, and now give me 5 days after closing to vacate, after I questioned the original stipulation, where I had to move out before closing, which was crazy!

Monday, July 9, 2007

It is amazing what you can get used to if you really have to. Today is my third day in a row getting spomge-bathed. Not too bad, and I am just as clean. But what to do about the hair. I am going to have to go to a local salon and get a shampoo and blow-dry. I am supposed to go to the kickoff party for the Long Island Walk to D’Feet ALS on Wednesday night, so I want to look halfway-decent for that.

I was able to get into the bathroom this morning but I couldn’t make the turn to get into the shower. It involves a pivot-turn on my right foot while holding on to the sink, and then swinging my lleft foot around. If the right foot starts to turn before I get the left foot around, it’s all over. Then the ankle turns and I am standing on a twisted foot, and starts to swell up, I get fatigued and out of breath, and it only gets progressively worse. I tried three times and then I gave up. I didn’t want to get so fatigued that I wouldn’t have the strength to get out of the bathroom or, worse yet, fall and break a bone(s).

I am trying to get my gastroenterologist on the phone to make an appointment this week.
And I am also trying to find out from Home Medical Equipment if my bed can be fixed, or if Medicare bought it, in which case I will have to pay for repair. After 2 years Medicare purchases equipment so then the repairs become the patient’s responsibility.
I slept in the recliner last night and woke up with no backache, which I can’t say for my nights in the hospital bed. Maybe I should just sleep in the recliner from now on—that hospital bed has never been comfortable!

Warren stopped by last night to pick up my I-Mac manual because he is going to put my old desktop on eBay. Saturday, Ellita and I met Jody at PS1(Museum of Contemporary Art). I could actually live in Long Island City—great neighborhood resurgence and magnificent views of Manhattan. I may just take a field trip over there and look around. I could hang out at Gantry Park on the water and shop at Costco……worth a look.

My mercury problem is still looming, and my rep is on vacation. Thank goodness for ALSA and the loan closet!!!!! I also told the attorney that I would feel more comfortable sitting with him and going over the contracts before I sign. They amended the erroneous selling price of the original, and now give me 5 days after closing to vacate, after I questioned the original stipulation, where I had to move out before closing, which was crazy!

Saturday, July 7, 2007

feeding tube and bed woes

I am having a really tough time. None of this is anybody’s problem but mine, but it is so tough to handle these things when you can’t speak, and when you can’t get anywhere without calling access-a-ride with a day’s lead time.

First, my Mercury talking machine is still broken, and I am getting no response from the rep. Then on Friday, after my afternoon tube feeding, I closed the cap as I usually do, only to have everything spewing back out on me, all over the floor and my clothes – my whole lunch, some breakfast, and overall stinky stomach crap. I called my GI doctor who said I could meet him at the ER and he would change the tube. Problem: he is in Manhattan, and so are his hospitals. The only way I can get to Manhattan is by Access-a-Ride, and I need to call them a day before.

So he told me to go to a local ER and they would have to get a GI Dr, ti change my tube. So Ellita and I went to North Shore/LIJ in Forest Hills at about 1:30pm. We got an ER bed right away and within a half-hour I was seen by the attending physician, who said he would change the tube. Then, he forgot about us. At about four o’clock, a nurse came in and Ellita told her we were still waiting for the doctor. The doctor came back, and said he was supposed to go home at 4, but he “would see if they had a PEG tube”. He came back with some orange catheter, which was much thinner in diameter and said “we don’t have what you need, so this will have to do”. So then he proceeded to deflate the balloon that holds the tube in my belly and pull on the tube, saying “I can’t get this tube out”. He saw he was hurting me, so he stopped and put a clamp on it the size of a cuticle scissor and walked away. I said “I can’t walk away like this” and he said “then tie it up with a rubber band.” I asked him to call a GI doctor and he refused, saying that a GI doctor won’t come to the ER. Ellita and I walked out and came home, It was now 5:00pm, and we put a rubber band around the tube. That is how it will have to stay until I can get in to see Dr. Cohen in Manhattan. I have to call him Monday to see when I can get an appointment, and then go in on Access-a-Ride.

It is now Saturday morning and I have been up since 4:00am. My hospital bed went haywire, and the head keeps going up and down by itself. I think Medicare may have purchased it, so I probably have to pay to repair it, I doubt if they can come until next week, so I will either have to sleep in my recliner or my wheelchair until then.

These are my problems, and I have to deal with them. But it is so difficult with this disease to deal with anything.

Saturday, June 30, 2007

My creation

My creation
Originally uploaded by fec139
just fooling around....betcha didn't know Chelsea posed for Warhol!!!!

Friday, June 29, 2007

Just spent three hours sitting on my bathroom toilet. This morning I got into the bathroom and shower and out again with no incident. The fact that I was so weak so early in the afternoon is a mystery.

I was so strong this morning, and I ended up crying out of sheer frustration. Poor Ellita had to use the porter’s bathroom in the basement while I sat waiting for my second wind, which never came. So we enlisted the doorman’s help again.

Now we have to limit bathroom trips to morning shower. I can’t take the risk of getting stuck or, worse, falling, I am so frustrated.

Wednesday, June 27, 2007

bathroom hassles and living my best life

I had a bad couple of days last week where I just didn’t have the strength to get into the tub. Twice last Wednesday I had to be taken off the floor by the aides and my doorman because I got stuck in the “no-man’s land”, that passageway into my bathroom that won’t fit a wheelchair, and only fits one person. The aide held me up as long as she could, and then for the safety of both of us, I had to drop to the floor. You can’t pick up a person with muscle weakness by the arms or legs, because there isn’t that muscle support around the joints, and you can dislocate a limb. Next time you eat a chicken, look at the hips and legs, and you can see what I mean. So I had to be lifted from the torso.

For the next day, Ellita and I worked out a strategy whereby she would wash me down and we would go to the hair salon every few days for a shampoo. But by Friday we both figured out that if I took the few steps into the bathroom slowly, resting between each step, I could do it, And I can’t make that turn into the shower right away; I have to sit on the toilet and rest for a few minutes.

I had gotten back the Mercury talking device, but it had a whole new problem. So Ron came and fixed and I have my fingers crossed it will behave. So now I can pack the ALSA loaner up in the box and send it back.

Olga the Respiratory Therapist came to adjust the portable vent. I figured out that I just have to carry a little piece that goes in my nose, in my bag.

Hooray! Louise asked me why I didn’t ask her to take me to the Murphy’s for July 4th and I said that I knew she always goes to a barbecue with the people from her church. So she said that she will forego that, and go with me! Jeanellen actually rented a handicap-accessible port-a-potty --- I never knew there was such a thing.

I am going to join SATH.com. That is an organization that specializes in travel for the disabled. Even if I want to go to a friend’s house upstate, I could use them for something like handicap-van rental, or wheelchair rental on the other end.

I proposed to Sue Zimmerman, the ALSA social worker to work with the new social work intern on a manual of resources for people like me, who have care and equipment, but can’t work anymore, and want to live our best lives with ALS. Sue is pitching the idea to Adele Marano of ALSA.

Sunday, June 17, 2007

post-birthday "what-now"

I was dwelling too much on those near and dear to my heart that I didn’t see around my birthday, that I wasn’t focusing enough on whom I DID get to see. I am so grateful to Jen and Judy, who came last Sunday to with a birthday cake and some gifts – a Starbucks card, Lindt truffles, and shower gel from Bath and Body Works. On the night of my birthday, I went to Appleby’s with Louise and had one of those alcoholic dessert drinks, which was more dessert than alcohol. And we shared this dessert thing, which was like a hot apple crisp with ice cream. I got cards from Debbie, Michelle Auletta and others. Even Gulshan brought me some Pom juice and Indian sweets. On my birthday, Ellita bought me dinner, and she bought me some body spray and lotion from Victoria’s Secret. Cheryl, her mom, bought me shampoo and conditioner from Victoria’s Secret. Norma sent a blast e-mail to everyone in the ALS community telling them it was my birthday, so I got literally about 100 e-mails.

Lynette’s first husband, and father to her eldest kids, died 2 weeks ago and she had to make an emergency trip to Guyana, so Gulshan has been working every single night since June 1. Although she was a trooper about it, I know it was difficult. Lynette came back to work last night and she had had her wallet stolen, so she was not a real happy camper.

And finally, there is one thing worse than not being invited to a Fourth of July. It’s being invited to a celebration I can’t get to. I am invited to Jeanellen’s family annual Fourth of July bash out in Eaton’s Neck and I can’t get there. I don’t think anyone will be able to drive with me, and the LIRR station is nowhere near there. I was invited to the Yankees game on ALS Night but it came in the middle of the aides’ shift change, so I couldn’t work it out. It is all so frustrating that, when I DO get invited somewhere, I have to depend on other people to get me there. It makes me so angry to lose my independence.

Wednesday, June 13, 2007

clinic visit and portable ventilator


I had my quarterly clinic visit on Monday at the Beth Israel ALS clinic

Dr Scelsa, Neurologist Interestingly, my strength has not changed much. He said I may have lost a little strength in my right hand, but negligible. I showed him the stiffness in my left hand and he said there is not much I can do except flexibility exercises.
I am apparently still upper-motor-neuron dominant – closer to PLS, or Primary Lateral Sclerosis. I don’t have the muscle atrophy of lower-motor-neuron disease, so I do not have classic ALS. My muscles in my back are weak so I can’t sit or stand straight for very long. And I have heavy bulbar involvement which affects speech, chewing, and swallowing.

Betsy, Respiratory Therapist She ordered a portable ventilator, which goes on the back of my wheelchair, She didn’t order the car adaptor because I am rarely in a car, but there is a battery pack so I can use it when I’m out, because I am increasingly out of breath during the day, and I can’t travel with the bi-pap, which needs to be plugged in to an outlet. She also adjusted the setting on my bi-pap so I wouldn’t get those carbon-dioxide headaches I have been getting.

Dietician I was bummed to find out that I only lost 6 pounds, so she said I can cut down to 2 cans of food through my tube every day and take in more fruits and veggies by mouth and make sure I hydrate through the tube.

Social Worker and Occupational Therapist: Nothing more they can do for me. I have my insurance coverage and all assistive equipment.

As a matter of fct, my clinic visits are more spaced out now. I don’t go back for four months, instead of the usual three.

I got my portable ventilator this afternoon but now I have to have a platform put in the back of my wheelchair for the battery pack. I am really going to scare people now.

Friday, June 8, 2007

ALS and birthdays

It was my birthday yesterday, so let me just say that I can't believe another birthday has gone by.

Life can change in an instant -- a sudden illness, accident, anything can happen. We all never know which birthday will be our last; this is true for everybody. In Januar, 2004 I was told I have a fatal disease and most likely had 2-5 more years left. But so many people are dead in an instant, without any warning at all, or fall ill and are on the road to death from then on.

So I am grateful I was given the gift of timw. Because ecen with ALS, I have seen others diagnosed after me who are already gone. We all have to be thankful we are here today.

Sunday, June 3, 2007

DC Advocacy Days 2 and 3

DC Advocacy Days 2 and 3

So Tuesday was kind of preparation for The Hill. First, we attended a meeting about what to expect. I could tell from the talk that, as I expected, DC Advocacy was going to be big and impressive. After the prep meeting, there was another seminar on recent advances in research. Of course, the topic of stem cells came up. As I suspected, stem-cell research is our biggest hope for a cure and/or better treatments.

On Tuesday evening, we attended an awards presentation at the historic Carnegie Library. There was also a reception with a baseball-park theme. Each section of the buffet was divided into regions, and typical ballpark food was displayed, including regional specialties. So, among the hotdogs and French fries, were pizza for New York, cheesesteak sandwiches for Philadelphia, and nachos and fried churros for San Diego, and clam chowder for Boston. And hostesses passed through with baskets full of bags of Cracker Jacks, and Baby Ruth candy bars. It was a lot of fun.

Wednesday morning we woke up at 5:00am, for the day on The Hill. After breakfast at the host hotel, the Renaissance, we boarded buses for the buildings where the senators and Representatives have their offices.

There was a lot of walking, or rolling in my case, from one building to another. Our first stop was the Cannon Building to meer Carolyn McCarthy from the Fourth Congressional District on Long Island. Even though I do not live in her district, my family does, and of course, her district is where I am from. McCarthy’s rise to Congress was out of a tragic story, one that was a big part of our history here.

On December 7, 1993, as a Long Island Railroad train full of commuters from Manhattan, pulled into the Merillon Avenue station in Garden City, a crazed gunman by the name of Colin Ferguson opened fire in one of the cars. Two of his 25 victims were Dennis McCarthy and his son Kevin. Dennis was killed, along with five others; Kevin was one of 19 injured. As a result of her husband’s murder and son’s severe injuries, Carolyn, then a nurse, became an activist for gun control. Thereafter, she ran for Congress, and there she still sits.

She greeted us very enthusiastically, and listened to our presentation, including my story that I had pre-typed and saved in my Mercury speaking device. We took pictures, which she promised to send us. I told her what an inspiration she has been, and she told me how inspired she was by my presence in her office. As a followup, I contributed an entry on Metroblog NYC called “Carolyn McCarthy Rocks!” and somehow it came to the attention of Peter Kay, her Legislative Assistant, and he e-mailed to thank me. He said McCarthy was “tickled” to read my article!

Then, we were off to see Anthony Weiner, the Representative from my, and Louise’s district. Weiner is one of the sponsors of the ALS Registry Bill, which he quickly reminded us of while he whizzed by in the hall. We got to do our presentation to Weiner’s aide, and also to the aides of Hillary Clinton and Chuck Schumer, our two senators.

We were pretty exhausted by the time we arrived at Union Station for our 7:10 train.
Ellita and I had some dinner, and we boarded the train with Jody and Maria. We had an Access-a-Ride pickup scheduled for 10:21 at Penn Station – well in line with our scheduled arrival of 9:45. Well, as luck would have it, our train met with a mishap; sometime after Philadelphia, we smelled a fire. Some debris on the tracks caught fire and our train was badly delayed. We then knew we were going to lose Access-a-ride! So Jody used her power of “ big mouth” and requested that they send another van. Of course they wouldn’t confirm it to us. Long story short: I got to Penn Station, sent Ellita home in a taxi, while Jody and Maria Castronovo waited with me until Lynette arrived from my house in a taxi. I had no idea that taxis had gotten so expensive! Just ten years ago, I took taxis from Manhattan to Queens for under $20 and now they are more than $40!! Lynette arrived at Penn at 11:45, and we received a confirmed time for Access-a-Ride pickup of 1:00am. They arrived at 1:15, home at 1:45, to bed at 2:15am. I don’t think I need to say how exhausted I was the next day, but it was all worth it, and I can’t wait to do it again.

NEXT UP: Fern’s Fighters, Talking Machine battles, etc.