Thursday, December 9, 2010

Where Were You on December 8, 1980?

I hope everyone doesn't mind that I seem to be veering off-topic this time.  Actually I'm not, because living with ALS is not about talking all the time about my woes and challenges with everyday living, but also reflecting on life and passages and having the time to reflect on the events that have an impact on our lives.  My life is about so much more than a disease that I have had to learn to live with.  Having ALS or any chronic illness is about reflection and also relating the important concept that there is a PERSON sitting in that wheelchair, and often a person who lived a regular, healthy and full life before getting sick or hurt.

I realize that I haven't been updating the blog as often as I would like because I seemed to have a writer's block as concerned ALS.  I was just bored with writing about a disease all the time.  Thankfully, I am stable and there were not a lot of changes.  I think I will have the will to update more frequently if I make it about me and not about the disease all the time. 

Is it possible?  Could 30 years have passed since Mark David Chapman senselessly shot John Lennon to death?  Could it be that the last time we saw him alive was when he was just 40?  What would he be like at 70 years old today?  I think he would be a supporter of President Obama and certainly would be very disturbed about the situation in the Middle East, and the fact that we are at war.  I am sure that he and Yoko, AND SEAN, would be out there demonstrating, making speeches, and even speaking on behalf of candidates whose positions they believed in.  I'm so sorry he isn't with us anymore.  I still miss him, and I don't think he would have been any more slowed down at 70. 

Yesterday at the Dakota, where Yoko still lives, and at Strawberry Fields in Central Park for John's
birthday on October 9 of this year [John's 70th birthday] fans of all ages gathered.  What was most striking to baby boomers such as myself, were the kids who were there who were not even born when John was murdered.  I cannot even wrap my head around that!  As a kid, I don't think there was any dead musician I would have worshiped like that.  It's testimony to the influence John and the Beatles still have on the world.

I thought a lot yesterday about the concept of legacy.  John Lennon left such a legacy to be honored 30 years after his death.  It's his way of living long after his death.  We can all leave a legacy.  Something so simple as my sister Haley making my Mom's special potatoes every Thanksgiving [she's been dead 15 years] is a legacy.  Even my two nieces who were born after my mom died, refer to these potatoes as "Grandma's potatoes".

With the wonders of the internet, it's so much easier to leave a legacy than it used to be.  I wish my mom had been able to have a Facebook page.  She would have loved that.  And, as a movie fan, she would have lived on imdb.com.  And John?  He would have had a field day with Facebook and Twitter.  Just think of how accessible he would have been to everyone through the Web.

We should all work on leaving a legacy.  What would be your legacy?  Do you remember where you were and what you were doing when you heard the news?  I was in my kitchen in Los Angeles, where I moved a year before, cooking my dinner when I heard the news on the radio that John had been shot and was taken to St. Luke's Hospital.  I prayed for him, and a short time later, I heard he died.  I remember not being able to process the information, and wondering why someone would kill this man who had stayed home to be a father that he was never able to be for his first son, to his son Sean. And most of all, he wanted to be the father he never had, since his own father had abandoned him.  He talked about peace, and I believed peace was all he wanted in the world. 

The memorial to John Lennon at Strawberry Fields in Central Park, New York City

John loved NewYork!! I would have loved to hear his take on our city and what's happened since his death -- 9/11, schools, gentrification, Bloomberg.  Because of his murder, his widow Yoko Ono and his son Sean have been reclusive.  But if not for the murder, all three of them would be out there in the city, even in Washington.  Just as Mom lives through her potatoes [and other things, of course], John lives today through his legacy of peace and love. 

Sunday, October 17, 2010

I Lost a Dear Aunt, Botox, Machines [again], Book [still]

First, let me say that I lost a beloved family member this week.  My aunt, Ruth Pasternack, was 89 and had numerous health problems in the last few years, but about 40 years ago, she survived a cerebral hemorrhage, so I always thought of her as indestructible. She was my father's sister and very close to him. Today, my dad said he is very sad because she was the only person he could confide in.  He will miss his oldest sister [he has four, and he is not as close to the other three].

Machines....oy, we can't live with them, and we can't live without them.   Kind of like men.....or women, depending on your desires.  Except I can live without a man; I can't live without my machines.  My lifeline -- my internet -- totally went away two weeks ago.   The closest appointment they had was a whole week later.  Don't tell Time Warner, but I found a way to get on some of my neighbors' networks, for a few minutes at a time, anyway.  Finally a week later, the cable guy came, made a "minor adjustment" to my router, and I'm fine.  I don't think anyone particularly missed me and that was a bit disturbing.  But,  I'm back in business. My cable remote had also decided to die last week, and Time Warner promised to send one in the mail.  But we asked the cable guy when he came, if there was anything he could do, and luckily he was able to bring me a brand-new replacement from his truck.  Now I have issues with my bi-pap ventilator and I have to deal with phone calls to the respiratory company tomorrow.  Thank goodness for relay calling, but it does take a long time.

I had my first Botox injections in my legs and about now is when the effects are supposed to be peaking.  It seems to be going well because the aides don't have to stretch my feet as much as before, to get them in the braces.  And, for the first time in years, my feet look like feet again, instead of big shapeless lumps.  I might even sometimes try to wear regular shoes.  The problem is that I am still not seated properly in this wheelchair and I can't put my feet on the footrests without turning them on their sides, and my knees are splayed out.  The bad news is that the whole process for the new wheelchair has been halted due to insurance issues.

As for my book, I am furiously writing and rewriting, paying close attention to tone and attitude.  I want to keep it as light as possible. And it seems that every day I am changing my focus and my title and chapter titles.  I have two other books going on in my head  which are more fictional, so I want to get this first book done.  My aides are giving me more privacy these days.  I am finding myself in a sort of  de facto solitude -- not self-imposed, just that people who used to visit are not coming anymore, and those who still visit are coming a lot less -- and it's serving me with more time to write and do things that I really need peace and quiet to do.  It's not what I would have liked, and it made for a lonely summer, but I've used it to my advantage.  I've taken to being grateful that I am still here, and still able to type.

Wednesday, September 22, 2010

MDA Jerry Lewis Telethon and Other News

Oops, I did it again!  I let too much time go between updates.  Once again, too many things happening at once.  I got my wheelchair back on a Friday, and had the technician come the following Monday to adjust the footrest and headrest, which were out of whack. And, then, luckily, the next day-- Tuesday -- the loan closet was able to pick up the loaner and I was able to make room in the apartment again.  Sounds perfect, right?  The day after -- Wednesday -- the wheelchair decides to stop working.  The wheelchair company was so upset by this and sent the technician out yet again.  It was the old problem of the wheel slipping from "Drive" into "Push" but this time, we couldn't get it to go again.  The tech said we might have to do it more than once and then give the wheelchair a little shake.  It worked and it has worked ever since -- thank goodness!! Oh, and the bed is repaired.  It needed a new motor too.  I don't know what it is with me and motors, but I wanted to call in an exorcist.  I really felt like I would lose my sanity -- the little that I have left, that is.


Now, to the Muscular Dystrophy Association [MDA] and the Annual Jerry Lewis Labor Day Telethon.  I went to the studio and was told I would receive the Personal Achievement Award and an "interview".  Now I bet you're asking "How does a person who doesn't speak, do an interview?"  Easy.  You get the questions in advance, formulate the answers on the Speaking Device, save them as files named so that you know which file answers which question, and on the day of the interview, hopefully you push the right answer to the right question.  I was paranoid about this.  There were four questions and so I had four files saved and when I got the question, I would open the file and the machine would speak the response.  I practiced several times to make sure the answers were still there.  When I went in front of the camera, it was even easier, because the Telethon was running behind, so we only had time for two questions and answers.  Everybody told me I looked beautiful [liars!] and I did well [not as much of a lie].


It was more thrilling than I expected, because I saw up close some of the performers who were "legends of rock and roll".  Remember that scene from the movie "Rainman", when Dustin Hoffman repeated a promo line from a radio station "WXXX, the legends of rock and roll...." ad nauseum?  Well I got to see Ronnie Spector, Connie Francis, Tommy James [without the Shondelles] and Gene Cornish of the Young Rascals up close. And, of course Tony Orlando, who made me want to "tie a yellow ribbon round the old oak tree" and "knock three times".  He looked great, and his songs remind me of college, because they were on the radio during my college days, and Tony Orlando and Dawn had a  summer variety show on TV [remember variety shows?]  And if you don't recognize these names, then you are under 50. Okay, so it wasn't Justin Bieber or Beyonce.


Now a word about the inspiration I felt.  A lot of disrespect has been paid the Telethon recently, and especially Jerry Lewis.  Jerry is in his 80s and all his old contemporaries are already gone.  Someday, he will be gone too. I read a very snarky article by some idiot in the Washington Post, saying that Jerry is too old, and the Telethon should go the way of the Betamax or word processor.  WHAT???  They raised about $58 million this year in the crappiest economy we have had in decades!!  And as if the article weren't bad enough, the comments at the end were totally shocking.  Comments like "with all the money raised, how come they have no cure yet?"  Can you say "Almost 50 diseases"? and wait!!  Does cancer have a cure?  How many billions have we raised for cancer?  And yet, that money has made a world of difference in research for better treatments, and methods of early detection, which leads to prevention and stopping cancer from spreading.  


So it is with the MDA.  Research has come up with amazingly effective treatments for many of the diseases, and many ways of assuring that people with ALS and the other neuromuscular diseases live longer and more productive lives.  That wheelchair and speaking device I have?  I wouldn't have them if it weren't for MDA, which helped with the 20% copay that Medicare doesn't cover.  My wheelchair cost $25,000 and my speaking device was about $7,000+.  Do the math and figure out 20%.  How many people have that kind of money, especially those of us who have already used our life-savings for uncovered or undercovered medical costs?  And how about the interdisciplinary clinic at Cornell/Hospital for Special Surgery I attend every three months and the support group many of us attend monthly.  Those have to be subsidized by money from MDA, which also runs summer camps for children with neuromuscular diseases, and loan closets which lend equipment to patients whose own are in repair.


I agree that someone should probably be standing by to take the helm, just as Ryan Seacrest is doing for Dick Clark's New Years Eve celebration in Times Square.  But to say that the MDA Telethon should end because Jerry Lewis is getting old?  And to say "with all that money, where's the cure?"? is just pure ignorance and stupidness, as one of my aides calls it.   If someone doesn't want to give, it's not like tax dollars.  Don't give.  And just because you don't like Jerry Lewis and question his motivations, who cares?  He is an icon and the Telethon is an icon and a big fundraiser that does a lot of good.  If you could have seen the little kids I saw in the green room before the Telethon, and how they made me feel guilty for complaining that I got a disabling disease at 48 years old!!  They had great attitudes and their families were just as upbeat.  It was the most inspiring event I had the privilege of attending in a long, long time!!

Tuesday, August 31, 2010

Update August 30, 2010-- Bye-Bye Summer

Well summer is at an end.  I am grateful for the three outings I had this summer, which was really a hot one.  At the beginning of the summer, Louise invited me to the annual barbecue at her church, St. Luke's, in Forest Hills, on a beautiful summer evening.  In July, Judy came out and we took Access-a-Ride to the Rockaway boardwalk. It was pretty empty on a Tuesday, and Rockaway is still very depressed, with a lot of boarded-up businesses right next to the beach on Beach 116th Street.  It reminded me of my home town -- Long Beach -- before it got the HUD grant which facilitated its revival.  There was an SRO right off the beach and therefore some shady characters on the boardwalk.  Originally, we were going to go to Brighton and have lunch in one of the Russian restaurants on that boardwalk, but I thought it would be too far, and there is a city bus from Rockaway to my neighborhood in case we had any trouble with Access-a-Ride. But Access-a-Ride was impeccably on time, and I'd forgotten what a long ride it was from my house to Rockaway, along Cross Bay Blvd and through a long stretch of nature preserve.  I wish I had gone with Judy's original suggestion of Brighton, which would have taken the same amount of time over parkway.   Oh well. But it was hot and the sun was out, and I knew it would be my only opportunity to see the ocean this year, so I was grateful to be there. And Judy is great for having gone with me.

My third and last outing this summer was in mid-August. Jenny Vidoni, who works at MDA in Manhattan and coordinates the MDA/ALS efforts in NYC, came out to visit.  I know Jenny from our support group at All Souls Church, which she co-facilitates.  I was just so grateful that she came out because Manhattanites hate to come to the outer boroughs.  We walked to Flushing Meadows Park, and visited the Zoo.  We had a great day.  Jenny is used to dealing with all kinds of disabilities, so it was fun, and extremely comfortable.

I was invited to be part of the Consumer Board of Concepts of Independence, Inc.  Concepts is the company that runs my Consumer Directed Personal Assistant Program [CD-PAP]  This is something that disabilities advocates fought for, along with the Americans with Disabilities Act.  The CD-PAP allows me to remain in my home and select my own aides [personal assistants], rather than depend on an agency.  Those of you readers who have been following me since the Caring Bridge page I had, know what a triumph it was when I got onto the Concepts program.  The agency I worked with before, through which I met 3 of the aides I have now,  was less than accommodating, sending all kinds of aides to me who were less than satisfactory.  I was robbed of a brand-new digital camera, and plenty of cash.  Some of them were so scary, I was afraid to go to sleep at night.  Eventually, I got a team of aides whom I could trust.  But when any of them called sick, the agency sent strange aides instead of ones I already knew.  It's very difficult to keep training strangers about what to do, especially since I can't speak.  And some of them were intimidated, frightened, or just plain lazy.  I had an assortment of ladies who I am sure were nice people, but they resented being sent to such a "difficult case" and took their perceived misfortune out on me, or just fell asleep, snoring, in my big comfortable chair.  My complaints fell on deaf ears, with the agency supervisor often telling me "I have a hard time finding aides who will go to you at all".  That didn't make me feel very good, and to top it off, I had a nurse who would come once a week and tell me "I have a hard time finding an agency who will take your case on a long-term basis, because your case is so difficult", which made me feel even worse. The day I switched to Concepts was a happy day.

Friday, August 6, 2010

Long-Overdue Update

Once again, too much time between updates.  There have been too many things hanging, and too many things changing minute by minute.  I didn't want to write about something, only to have it change between the time I typed it and the time I pushed the "publish" button, only to have it change still again after publishing and before sharing the link on Facebook and Twitter.

So, I was having trouble with my PEG [feeding] tube.  Since it was replaced in September 2009, at Beth Israel Hospital, it was never right.  From the time it was originally placed in September, 2005 until then it hadn't given me a moment of trouble.  The only reason I had it replaced 4 years later was that PEGs are usually changed every two years and this one was discolored, and the rubber had weakened.  So it was replaced in September of 2009. But when it fell out in March of 2010, I went to my local ER and the tube was replaced by a resident [not GI] doctor.  That was when the situation got worse -- the tube leaked stomach acid, which ate through my skin, making the area around the tube angry-looking and very painful.  The doctor at Beth Israel insisted everything was okay, but I knew it wasn't.  So during my next quarterly visit to the MDA/ALS clinic at NY Presbyterian/Weill-Cornell, I lifted up my shirt for my neurologist, and she was pretty horrified 

So fast forward to July and Dr. Crawford at Cornell, GI doctor.  He says I am best off replacing the tube in a whole new location.  This would mean another endoscopic procedure and going under general anesthesia again.  Of course, I freak out, and Dr. Crawford says he feels bad, but it might not be enough to do a simple tube replacement in the same site.  Anesthesia is always a risk for anyone, but especially for a person with respiratory issues.  When it was done in September, I wore my bi-Pap while I was under anesthesia and all went well, but this is 11 months later and I might not be so lucky this time.  But I resign myself because it has to be done.

I came into Dr. Crawford's office this past Monday with my bi-Pap, fully expecting to have the endoscopy, and Dr. Crawford tells me that he has decided to do a simple PEG replacement to see if that works.  So that's what he did in the same site.    to tilt a bit in order to clearWe are keeping our fingers crossed that this does the trick. If it doesn't, I'm headed for another endoscopy and anesthesia.

My wheelchair is fixed -- for now.  Every once in a while, the tilt stops working, but then it starts again unexpectedly.  This is a pain when I need to nap, and when I travel in the street, because I need to tilt slightly in order to clear bumps and curbs.  I spend as much as 16-18 hours in the wheelchair, so napping and relaxing are very important.  So the technician came to my house last Friday and fixed the footrest, which wouldn't stay in the up position.  Getting the footrest out of the way is important for transfers.  So transfers have been hard on the aides and myself.  Ideally in a transfer -- from bed to wheelchair, wheelchair to bed or commode, etc-- the aide and patient work together, with the patient helping as much as possible according to his/his remaining abilities.  I have a new wheelchair finally in process, but it's anyone's guess how long it will take for that to happen.

The weather has not been good for someone with compromised breathing, so I have been inside much more than I like to be, and much more than any other summer so far.  Judy has come over a couple of times, and we have had to postpone a few times because of the high humidity and poor air quality outside.  I was invited to Louise's church's barbecue one evening, which was a very welcome and pleasant outing for me, but we were careful to get out of there when the mosquitoes came out after dark.  Ironically, the best place for me is the allergen-free beach, but I don't think there will be an opportunity for me to get to any beach this year. This loss has been the hardest for me to accept.

Sunday, July 4, 2010

Wheelchair Woes and Perspective, Eating Healthy,

 YES YOU'VE COME TO THE RIGHT PLACE! Same blog with a new design.  I thought we needed a change.  Feedback welcome of course.  What do you think?  I thought this would be easier on the eyes, but I am not quite used to it yet myself.  Believe it or not, change is not easy for me. 

I am shocked at the time lapse between my last update and now.  It is mostly because of wheelchair problems.  In mid-June, my wheelchair died.  It just stopped driving.  So for a few days, my aide put it in "push" [or "manual"]  mode and pushed a 386-pound wheelchair with me in it [extra weight of my body undisclosed here] around the apartment until she threw out her shoulder.  Then the ALSA loan closet dropped off the best thing they had available -- a wheelchair tailor-made for a 300-pound,  6-foot-tall quarterback, with the seat controls [tilt, recline, and footrest elevation] ON THE BACK OF THE CHAIR.  This meant that, all the 30 or so times a day I needed to recline to relieve my aching back, I had to ask my aide to do it.

Well, the wheelchair company picked up my wheelchair for repair and the loan closet received a loaner returned to the loan closet with all the controls on the arm, but with a footrest that didn't work so well, and fanned out at the sides, making it a major obstacle to move around in certain parts of the apartment.  And the worst part -- it had no headrest. So if I fell off to sleep, my head would flop off to one side, and I would wake up sore from my neck through to my shoulders.


Finally, after about two weeks [which is actually very fast for a wheelchair repair], I got my own wheelchair back, and I can once again sit at my computer straight and type with both hands.  You see, wheelchairs aren't just chairs on wheels.  The wheelchair is where a PWD spends all waking hours.  They are custom-made for the patients measurements and abilities.  Some have controls on the back, if the patient cannot use his hands, and must be operated by an attendant.  Some even have controls operated by the patient's head.  The seating is also custom-fitted.  So a loaner is never quite right, although the lady who runs the loan closet at ALSA does her best to match up the loaner and the patient [she was on vacation when my wheelchair died, by the way]
So the only analogy I can give to someone who isn't familiar with wheelchairs is this: what if you had to send your body to be fixed and, in the meantime, you had to borrow another body until yours came back.  The loaner body would be as close as possible to your own, but it wouldn't be quite right and wouldn't work the way your body works.  

I have a friend I recently reconnected with, and I am very sad for what has happened to her since we last met.  She lost her job and never managed to find another decent job again.  It's so hard out there in this economy.  But I wonder if she is just refusing to do certain things, or if she is so mired in depression that she is "stuck".  Either way, I understand, but I can't help thinking what my mom always drummed into me -- "if you have your health, you can always do something to make money".  However,  I think she was talking about physical health; loss of mental health is just as debilitating.  I listen to this friend and I refrain from preaching,  or even giving advice.  I empathize.  What I can't wrap my head around is mature adults saying they are having "the worst day of my life".  When I hear why, I say to myself "that should only be the worst day of MY life."  It's all in perspective, and I keep thinking how amazing it is that I have coped with some of the things that have happened.  And, yet, I have so much to feel lucky about.  There is always someone much worse off than I am.

The only defense I have right now with a disease that has no cure and no really effective treatment to stop progression -- is a strong immune system.  Recent studies have shown that patients who retain their weight have a longer survival.  Well, I have retained my weight, and added some.  I am totally disgusted with the way I look.  I am the heaviest I have ever been, and heavier than I thought I would ever be in my wildest dreams.  If anyone had told me before ALS that one day I would reach this weight, my reaction would have been "shoot me now and get it over with"  I was an avid exerciser and walked the city many miles during weekends and vacations.  If I had let myself go, and needed to drop 10-20 pounds, I would put my mind to it, and be successful. Anyway, exercise and burning calories is next to impossible with ALS, so I have committed myself to healthy eating.  I decided that I was putting a lot of empty calories in my body, and would replace those with healthy calories.  I have given up eating red meat and poultry, so I am almost a vegetarian.  I snack on healthy nuts like almonds, cashews, and walnuts, reasonable amounts of fruits, and yogurt [preferable plain with fresh fruit].  For meals, I eat a lot of salad and vegetables, quinoa [a whole grain with a lot of protein], a banana every day, a half-can of coconut milk [lots of nutrients and anti-viral and pro-biotic properties], yogurt [probiotic] and anti-oxidant-rich fruits like pomegranate, blueberries, and purple grapes, whole grains, fish [calcium, fish oil, and protein], green tea, and cruciferous vegetables [anti-cancer],  and occasionally dark chocolate and red wine.  I have cut down on sugar, refused sugary desserts except on my birthday, use agave nectar as a sweetener in my tea, and also cut down on salt and carbonated beverages.

Most of all -- the hardest --I try to stay out of stressful situations. This has meant forgiving people who have made empty promises that they never intended to fulfill, and the people in my life I assumed would be there for me because either 1) I have been there for them in the past 2) they are old friends or related to me.  Forgiveness is for my benefit, and not for their benefit.  I also avoid contact with people who aggravate me, abase me, or will never accept the way I am.  I blog and twitter to raise awareness, but I'm done with trying to change certain peoples' minds.  I am there to listen and share in joys and tragedies, but if the connection gets too aggravating or frustrating [and especially if it gets abusive or disrespectful toward me], I walk away faster than I would have in the past. I have to, for my own preservation. 

Friday, June 11, 2010

Update 6/10/2010: Birthday Meals, Mercury Resurrection, Wheelchair Troubleshoot

Monday June 7 was my 55th birthday.  What is the worst thing about turning 55?  When I do an online survey or otherwise fill out any form on the internet, there is usually a check-off category 45-54 and then one for 55-64 or -- even worse, and more often 55 or more.  I hate this!! Not only do we "55 or more" oldies get disqualified for more surveys, but just the thought of being in a category with people over 75 and even over 100?  My dad is 82 and he is a totally different generation, and there is a world of difference between baby-boomers [who can now be as old as 64] and World War II veterans and children of the Great Depression, is ludicrous [and I don't mean the rapper!]!! See? my last parenthetical statement can be understood marginally by someone my age [55], but anyone over 70 would say "huh?".  And anyone over 80 would say "what's a 'rapper' -- someone who knocks on doors?"  I rest my case.

So, on Saturday before my birthday, I went to lunch with my friends Judy and Louise to Thai Pot   in Forest Hills.  Then Judy gave me the second part of my birthday present: she accompanied me to Trader Joe so I could do some healthy food shopping.  One of my best purchases was a box of red quinoa, which my aide Cheryl cooked up for me [it is cooked like rice or couscous] and it provides a complete protein.  If you are a vegetarian, this is a great food, because in order to make a complete protein out of rice, you have to add beans, which are fattening and socially challenging [although the product Beano® is a life-saver].

On Sunday, the day before my birthday, my dad treated me and my aide, and the whole family -- my sister, brother-in-law, and my nephew and two nieces -- to dinner at the Outback Steakhouse in Queens Place/Target Mall.  I have to say that this Outback is really beautiful and not crazy-busy like other Outbacks.  This surprised me because the mall is loaded with people, but I think they tend to frequent the Red Lobster in the same mall.

I had fish, because I no longer eat red meat or poultry, and I was surprised how well a restaurant that is famous for ribs and steaks, did fish.  And the salad is the dream of anyone with chewing and/or swallowing issues -- everything is finely chopped!!  YAY!! When they brought out the chicken wing appetizers, I ate the celery dipped in blue cheese dressing -- I'm so good......haha!!

My Mercury communication device suddenly died on Friday when the screen went  .  I emailed the rep from Tobii [formerly ATI] and he said he would come by on Monday to check it out.  In the meantime, I went through an entire weekend writing on my board at my two birthday meals, and struggling with bad speech and my own special sign language with my aides.  Antoinette from ALSA graciously sent a loaner through UPS to arrive Monday morning.

Suddenly, after going to bed on Sunday night, I was awakened very early Monday morning -- about 3am, to the familiar tune of my Mercury shutting down, I figured it was a part of one of my weird dreams< and went back to sleep.  In the morning, I plugged it in again, pushed the "on" button and it went on, as if the last three days had never happened.  I emailed the company rep, but he never checked his email and came anyway.  When I repeated the story about what happened, he said "if it happens again, just remove the battery, disconnect any cords, and push the 'on' button for at least 20 seconds."  If I'd only known that when this first happened, my weekend would have been a whole lot easier.  Oh well......

After a recent event with a wheelchair glitch, I decided I would put together a short "troubleshooting" guide for wheelchair users and caregivers and companions, who may encounter a stalled wheelchair. Of course, this only applies to motorized wheelchairs.  Manual folding transfer chairs would not have this problem, of course.

1]  Don't panic. Relax.  Tell other people who may be around, and will be inconvenienced by the stalled wheelchair, that the situation is under control, and you will get moving in a few minutes or less.   It is no different from a stalled car, especially with everyone around you blasting their car horns. But understand that wheelchairs and people with disabilities just make people more uncomfortable, helpless and, in some cases, reduce intelligent rational adults to hysterical panic. Once you calm everybody down, proceed.

2]  Stop anyone from trying to push the wheelchair.  They can make the situation worse by knocking loose a wire connection or inadvertently moving any of the sensitive controls. You would have to be a super-hero to be able to push a stalled motorized wheelchair, especially with a person sitting in it.  My own weighs 382 pounds, and with my own weight [which I will not reveal], it weighs -- well -- more than 400 pounds.

3]  Many wheelchairs will not move if in tilt, the seat-back is reclined, and/or the seat is elevated. Make sure the chair and the seat-back are in the upright position, and the seat is down.  Then turn off and start again.

4]  If that isn't the problem,  it could be that the lever on one or both wheels might have been jarred from the "drive" position to the "manual" or "push" position. This may happen if someone tries to push the wheelchair.  In the latter position, the wheelchair will not go.  Try to get someone to check those levers and make sure they are in "drive".  Turn off and turn back on and see if it goes.

5]  The next thing to check are any cord connections.  Again, these can be jarred if someone has tried to push the wheelchair from the back.  Turn off the wheelchair and have someone check the connections and push any loose ones into place.  Then turn on the wheelchair and see if it starts then.

6]  If none of these work, you will have to put the wheelchair in "manual" or "push" mode and have someone push you out of the way, and probably push you onto the bus going home.  As a last resort, check your battery display.  Did you forget to charge the wheelchair and now the battery is dead? You will still have to get home. Although you don't need super-powers to push the wheelchair in manual, the "pusher" needs to have some strength because it is not easy.

Anyway, if anyone has any other trouble-shooting ideas, let me know.

Wednesday, May 26, 2010

MDA's "Anyone's Life Story", The NYC Walk to D'Feet, My VIP MTA Q60 Private Bus

May is ALS Awareness Month, so every May they dedicate their website to one ALS patient each day from all of their regions.  This year, I am their representative from the New York City region and May 26 is my day.  Go to Anyone's Life Story  for my profile.

So Fern's fighters raised about $2,000 [and still counting] for the NYC Walk to D'Feet ALS alon the Hudson River.  It was a beautiful day -- as a matter of fact, the weather was perfect!!  We took Access-a-Ride from home to the West Village, and figured it would be easier to just take the MTA NYC bus from the Hudson crosstown to 2nd Avenue and then the Q60 Queens Boulevard bus from East 60th Street and Second Avenue home to Rego Park [it goes down Queens Boulevard].  We figured this would be easier, but we never dreamed HOW MUCH easier it would be.

You see, when we reached East 60th Street and 2nd Avenue, where the bus route originates, we boarded an empty bus [me via the ramp of course] and to our utter surprise, the MTA dispatcher told the driver he was running late and needed to get "back on schedule" [you mean there is actually a schedule?]. He ordered the bus driver to put on his "out of service" and not pick up passengers until Woodhaven Boulevard, which is only two stops from my stop -- 63rd Dr.  That meant that I and Louise and my aide Cheryl had a private bus for 99% of our journey.  For those of you who don't take the public buses, this is a huge time saver, since stopping at every bus stop and picking up/dropping off passengers can take a lot of time.  So, a few red lights [Queens Boulevard is pretty well synchronized with traffic lights if you stay at a steady speed], were the only stops we made.  And, Queens Boulevard is a six-lane mini-highway with a main express road and a service road, so we got to ride the service road.  In short a normally 45+-minute ride was about 20 minutes and we were home in a jiffy.  So that was really good transportation karma.  All in all, it turned out to be a very successful day.  I'm happy to report that, at the starting line I only ate a half-bagel with a cream-cheese smear.  At the end point, I only had a few mini-muffins [yeah, I know -- sugar], and a diet coke [yes I know, I know]

On Saturday, May 22, I did a half-day with Ride for Life, a wonderful organization based out of Stony Brook University of the State University of New York [which happens to be my alma mater] in Eastern Long Island.  Every year patients ride their motorized wheelchairs, with friends and family members walking alongside, from Montauk to Manhattan.  Some people did the whole route and others did parts of the route.  Since I really don't have a way to get my wheelchair outside New York City, I do the NYC portion when I can.  This year, I met the group at Washington Square Park [West 4th] and we went all the way to Columbia University [West 116th] --approximately 5 miles. Louise walked part of the way and rode part of the way in someone's van [recent knee surgery] and my aide Cheryl walked the whole way!! [yay to both of them!!].  We had refreshments at Columbia and lunch at Washington Square Park.  The weather was perfect.  Ride for Life is a fantastic grass-roots organization that was started by Chris Pendergast, a former teacher in Northport, Long Island [fellow alum from Stony Brook University].  Each year the Ride, and other smaller events, raises money for research, patient services, and grants for things like respite care and home modifications. And, another important accomplishment of Chris and Ride for Life is the establishment of an ALS clinic at Stony Brook University Hospital.  Formerly, Long Island patients had to go to NYC [Columbia, Beth Israel, or Cornell] for their interdisciplinary team care.  As parts of Long Island [Suffolk County] can be 70 miles from Manhattan, this was a major hardship.  So the Stony Brook facility is a godsend!! Chris has been living with ALS for 17 years and, despite the hardships of living with this devastating disease, still runs Ride for Life year-round, with his wife Christine and a small [but dedicated] office staff and volunteers. Check out their website and see what one man has done despite a disabling illness, and with a team of volunteers and little overhead expense.

Tuesday, May 4, 2010

Home Care, Chuck Schumer Rocks, Two new passings, MDA Gives Me An Award




First of all, Senator Chuck Schumer rocks.  Read this letter he wrote to the disabled community of New York endorsing the Health Care Reform Bill and the Community First Choice Act, which helps chronically ill and disabled people stay at home and avoid institutionalization [i.e. nursing homes].

I humbly announce that I am the recipient of the NYC MDA's ALS Division's Personal Achievement Award for this year.  I could very likely appear on the annual tri-state NY metropolitan TV broadcast of the MDA Labor Day Telethon.

May is ALS Awareness Month and for every day in May, MDA presents a picture of an ALS patient and his or her "story".  I have been selected from the NYC area to represent my region. Its called "Anyone's Life Story" and you can see my story on May 26, on the MDA/ALS Division's website.

My condolences to the families of Maria Pizarro and Julie McCourt, two wonderful ladies who attended the Beth Israel ALS Association support groups with their families, and who lost their fights with ALS on the same day -- Sunday, May 2.  I will miss them.  This disease is so cruel!! They both had loyal spouses who were involved in their care, and a group of friends and family members who were there to support them.  They had everything to live for.

Unfortunately, I probably will not be able to participate in the Ride For Life this year.  They don't have enough volunteers to walk with the riders, and they will not be able to provide van transport to family members and friends who get tired.  Just the segment from Washington Square Park to Columbia Presbyterian Hospital which is half of one day, is from W. 8th Street to W. 168th street. At 20 blocks = 1 mile, do the math -- 8 miles.  The friend I had who went with me every year, had recent knee surgery and can't walk that far.  Even if she could take a bus part of the way, they won't let me ride alone with no one at my side, which I could do but they won't allow it.  My high school friend, who teaches in the Lawrence School District wants me to do the Lido Beach to Lawrence segment, which her school is doing.  They are going to see if they can make special arrangements to transport me to the starting point and from the ending point.  In that case, she or someone from her school will walk beside me.  So we'll see.  In the meantime, is anyone in the New York area free on May 25th to walk the 8 miles alongside me from Washington Square to Columbia Presbyterian?  Just let me know.

Last call to join my team "Fern's Fighters" at the Walk to D'Feet ALS on May 15th along the Hudson River!!  You can walk, donate, or both.  Just go to the team webpage to sign up or donate on line. Also, they need volunteers at the Walk to direct traffic along the route, give out water, and to work at the start and end points.  Please contact me if you would like to do this.  And, remember, we plan to walk at the Long Island Walk to D'Feet ALS in Eisenhower Park on September 26.

And finally there is a really great site that explains the Consumer Directed [Community Care] Program and the history of how it came about.  For anyone who wants to know how they can keep a sick family member or friend out of a nursing home or other institution, and not have to deal with the restrictions and other nightmares of a home care agency, it is a must-read!

Thursday, April 15, 2010

fernsfightersnyc10 Tiny URL for fernsfightersnyc10 Tiny URL for Greater New York Walk To Defeat ALS(TM):

Fern's Fighters
scroll down to the list of team members and use the link for "join team"


this is the link to sign up for the Walk to D'Feet ALS in NYC on Saturday, May 15th in Hudson River Park with my "Fern's Fighters" team. If Long Island is more convenient for you, we will be walking again on September 26, 2010 in Eisenhower Park.
The NYC walk is a one-way walk from the Village to the 50s, with celebration at the end-point. Unfortunately, there is no arranged transportation from end point to starting point. So, if you park your car at the starting point, you have to take public transportation back.

If you do the Long Island walk, it's a circular route, with a celebration back at the starting point, lots of food before the walk and hotdogs and lunch after the walk. Either walk is a lot of fun!! You can walk, donate, or both. And when you register, there is an area online to enter the names and addresses of your donors, who will then receive letters of acknowledgement from the ALS Association.

if you care to run a fundraiser before either walk, contact me and I will contact the ALS Association, who wants to assist with any fundraisers. If you are on Facebook [who isn't?], I suggest you become friends with ALS of GNY [Greater NY], and receive all the updates and tips from the Association.

Tuesday, April 13, 2010

Updates:Budget Cuts Affect Nassau Able-Ride and People With Disabilities in General

Sadly, I received notification that due to budget cuts, Nassau Able-Ride will no longer offer door-to-door service.  They are only required by law to provide service to people with disabilities along bus-routes, so that's what they are going to do.  This means that there are whole towns in Long Island that will not have Able-Ride paratransit service.  I'm happy to be living in New York City, where Access-a-Ride still offers door-to-door service.  It enabled me to go with my friend Judy to the kickoff party for the NYC Walk to D'Feet ALS at Yankee Stadium, and to the baby-naming of my friends' babies in Bayside, right on the border of Nassau and Queens.  But I would not have been able to go to my traditional New Years Eve party at my friend Nancy's house in Great Neck if not for the connection to Able-Ride.  This is very sad news for people with disabilities in Nassau County who don'thave use of a wheelchair van.  Budget cuts are hurting everyone.

Budget cuts could really hurt me in a big way too.  I am getting a visit from a nurse who works with NYC home care [CASA] next weekend, and she is going to evaluate me for continuation of home care.  Right now, I have two aides every day, on a "Split shift" of twelve hours each.  I am not likely to lose that, but they are not giving that arrangement to new applicants.  Rather they want to give everyone a "live-in" arrangement. In that plan, an aide lives in the whole day, usually for 3-4 days in a row. However, they are only paid for 14 hours.  This means that the aide is around in case there is an emergency in the night, but they are "off-duty" for eight hours.  They would rather work a 12-hour shift and go home, rather than have to hang out in a patient's house. I am sure that the aides I have now will refuse to do this.  So, if I am forced into a "live-in" aide situation, I am looking at a whole new set of aides.  That will not be fun, so I am going to have to convince this nurse that I need the two 12-hour shifts, without seeming so dependent that she will have to put me in a nursing facility.  It's a slippery slope, because I can do most things for myself, except I can't get into the kitchen, so the aides have to get everything for me.  So they would have to leave certain things within reach.  And since I don't really have proper sleeping arrangements, I would have to get an inflatable mattress at best.

On other important subjects, Lon Cohen says I can publish a book through Lulu with no cash outlay.  I was fitted for a new wheelchair, so I will get that in a few months. The new season of "The Tudors" has begun, and this season of "The Amazing Race" is coming to a conclusion.  I am going in May to see the "spasticity guru" as he is called by the Cornell ALS/MDA.  He is at the Hospital for Special Surgery.  The pollen count is also killing me, but when I feel I have to take an antihistamine, I can count on falling asleep for a few hours.  I love spring, but it is a double-edged sword for me.  I am comfortable inside with the A/C going.  I remember my beloved, now-retired, allergy doctor Sidney Rand telling me "Always take a vacation at the beach and never in the country.  Take hikes by the ocean on your days off, and never in the woods."  I do always feel best at the beach, far away from pollen and ragweed.  I always imagined myself retiring to a beach house to do my collages and my writing.  I will have to settle for an air-conditioned studio apartment in Queens. My biggest challenge is the TV soap operas in the background all day.  I can't help this, because the aides have to be amused too.

Friday, March 19, 2010

Good News About Local Hospital North Shore/LIJ Forest Hills, Wheelchair, Braces, etc

On Thursday, I had an emergency. My PEG feeding tube came out and my aide found herself holding it in her hand. I knew it wasn't a life-threatening occurrence, but she was rather freaked out. Since I had an empty stomach, no sickening liquid came pouring out, and I put the balloon back inside my belly and put surgical tape around it so it would stay in, and off we went to the Emergency Room of Forest Hills Hospital aka North Shore/Long Island Jewish Hospital. For twenty five years that I have been in Rego Park, this hospital has seen me throuh two sprained ankles, a slashed thumb and a broken toe pre-ALS, and a shattered wrist and subsequent surgery, as well as an injured foot post-ALS.  And most recently [I believe about 2 years ago], a horrendous experience when the tip of my PE tube came off.  At that time, it seemed nobody had ever seen a PEG tube before, and the attending doctor tried to pull it out, nearly killing me with pain.  I ended up going to Beth Israel Hospital, where my ALS team was at the time, and getting a new tip put on in about 2 minutes by a nurse in the GI Department.


So, I really didn't want to go to that local hospital, and called the doctor who did my PEG replacement last September, who was less than helpful.  He told me to "just go to any emergency room. I was not optimistic when I entered the ER, but they took me quickly and the attending doctor looked at my PE tube and said "Okay, we'll have to change this" and sent a nurse up to the GI department to get a tube.  He seemed rather surprised that I didn't have an extra one, and told me I should call my doctor and get two extra tubes to carry with me next time.  Anyway, the tube has a balloon on the end which, when inflated, holds in the tube. Occasionally, the balloon deflates and so the tube cannot stay in place anymore. In four years that I had the last tube, this never happened.  But I was told it could happen and that it wasn't life-threatening and had to be fixed as soon as possible.  Then, they x-rayed the site to make sure the tube was placed properly.  Within three hours of arriving at the ER, we were on our way home.  


I had been invited to attend a meeting of the consumer board of Concepts of Independence, the NYC agency that administers the CD-PAP [Consumer Directed Personal Assistant Program] through which my aides are paid.  This is a wonderful program by which I hire my own home health aides and we are not bound through the rules of an agency.  Early in my home care, I had terrible experiences with the Visiting Nurse Services, who would send different aides who didn't know me or my disease and I had some difficult days and nights. I also had a nurse who would come to visit and yell at me because I wasn't "getting better" and finally told me one day "we are having trouble finding aides to come to work with you, because they say the case is too hard".  Anyway, I was excited about being invited to this meeting, but I will have to postpone until the next time they meet.


My wheelchair is fixed and it is wonderful.  However, the MDA Cornell ALS Clinic wants to get me a whole new wheelchair, which usually is not approved before five years.  But they feel that with the progression of my disease, this wheelchair no longer meets my needs.  I'm not sure it ever completely did.  I also got a new bi-pap/ventilator combination called a Trilogy.  I went for my quarterly ALS clinic appointment a couple of weeks ago, and thanked Dr. Wu for speaking to my primary care doctor to get my blood pressure medication changed from Azor to Benicar HCT with a diuretic.  Now my feet look like feet again. I can even wear regular shoes sometimes.  The shoes for my new braces are a problem, however.  The podiatrist ordered shoes but they are too small, and he says I have to get custom-made shoes. These are going to be very expensive, and not covered by insurance. So I have to make payments on my credit cards until I have about $350 of credit to use.  I'm happy to say I can pay the bills with no problem, but I have so little left over that I am lucky to be able to buy groceries, let alone custom-made shoes.  Forget theater or baseball games this summer; that won't be a remote possibility.  I'll have very little pleasure or fun for a long while, but the shoes are a lot more important. 

Wednesday, February 24, 2010

Low-calorie diet could be deadly for Lou Gehrig's patients: study - Weight Management - C-Health

Low-calorie diet could be deadly for Lou Gehrig's patients: study - Weight Management - C-Health
OK so now what do I do? I'm damned if I do and I'm damned if I don't!! This article actually says I should follow a high-fat diet to save my motor neurons! It goes on to say that I should take in high calories to live longer! Go figure!!

Sunday, February 21, 2010

Broken Machines Yield Difficult Times For a Person With ALS

I am dependent on machines and devices, which never seem to be functioning all at the same time.  I am very grateful to have these things, because without them, I would not be able to live in my home, and have what little independence I do have.


First, my wheelchair.  There was a time when there existed only manual push chairs, and every day and every minute that I buzz around in my motorized wheelchair -- either inside or outside -- I marvel at the fact that once I am in my wheelchair in the morning, I don't have to ask someone to push me from the desk to the other side of the room.  And I'm sure I would hardly be able to go outside, because I would have to convince someone to push me down the street. And, imagine life before the Americans with Disabilities Act was passed in 1990! An old-timer who has been disabled since the 1960s told me once "Even if we got out of the house, where would we go with a motorized wheelchair?  There were no curb cuts, and almost no businesses were wheelchair accessible"

When I found out my wheelchair initially cost $25,000 I was shocked.  In 2002, I bought a Hyundai Elantra for $12,000, so how could a wheelchair cost the same as two of my cars?  Wheelchairs are custom-made for the user, and refitted periodically for body changes and disease progression.  The modifications recently done on my wheelchair were carefully measured and customized for me.  So, when I had to give up my wheelchair last week for new tires and to repair two important features that had broken since December when I got my wheelchair back from the modifications, I dreaded the process of getting a loaner.  Antoinette from ALSA ordered me a loaner and then I was in the hands of the medical supply shop that runs ALSA's loan closet.  So they brought wheelchair #1, which was beautiful, but the driver who brought it couldn't get the seat-tilt working.  Seat-tilt is important for relieving pressure periodically several times throughout the 14-16 hours I am in the chair.  Moreover, as I slip forward, or when I sit down again after toileting, seat-tilt allows me to use gravity to get my butt back in the cushion.

So later that day, at Antonette's urging, they brought wheelchair #2 -- a beautiful Lexus of wheelchairs.  It has all the features, but it's not mine, and not made for me.  So I can't go in the street any distance with this chair, because the footrest is all wrong and my feet kind of lay there on their sides.  And the side-guides that keep my body straight in my own chair, are not in this chair.  So my body leans to one side and I have to keep leaning to the other side in a conscious effort to correct it.  All this is very uncomfortable, even though it is the best possible alternative.  Picture if cars were custom-made for our bodies and we had to drive a loaner.  So I am praying that I get my own wheelchair back again this week!!

Thursday, February 4, 2010

ALS TDI (ALS Therapy Development Institute) :: Podcasts, Wheelchair Woes [yes, again].

ALS TDI (ALS Therapy Development Institute) :: Podcast

I love ALS TDI !!I think if anyone is going to find a cure or better treatments, it will be the scientists at ALS TDI. They work together with the ALS Association [ALSA], the Muscular Dystrophy Association [MDA], the Packard Center at Johns Hopkins, the Eleanor and Lou Gehrig Clinic and Motor Neuron Center at Columbia, and Massachusetts General, just to name a few.

You can now click on the link above to subscribe to ALS TDI's podcasts and be updated weekly on the wonderful work they do!!

Last Sunday, I tilted back in my wheelchair, as I always do a few times a day to take the pressure off my back, butt, and tailbone. But this time, I couldn't get the wheelchair to go down again. After about a half-hour of fiddling around -- turning the wheelchair on and off, pressing every button I could find -- it was time to call someone for advice. We knew that there was no way I and the aide [Ellita] could get me out of the wheelchair in that position, so I began to picture the drama of a firehouse call, and a bunch of nosy neighbors watching and giving their two-cents in English, Russian, and Chinese. I don't like drama and I prefer other kinds of attention, so I dreaded that scene. I had a business card from the wheelchair rep at the ALS clinic, so we called the poor guy on his cellphone. He was pretty nice, despite having his Sunday interrupted. He walked Ellita through some controls in the back with no success. Finally, Ellita found a wire that seemed to have a short, fiddled with it, and I got down. So now I can only tilt back just a little, which makes it hard for me to nap in the wheelchair.  Even more importantly, I use the tilt function to let gravity help me slide down and back so I can get my body properly seated. Not being able to do that easily and completely, is an inconvenience for sure. Antoinette from ALSA is coming to the rescue with a suitable loaner [go back to December to read about the loaner hell when the wheelchair company brought me what can only be described as a Barcalounger on wheels fitted for a 350-pound man]. I am waiting for the loaner to be delivered before I let the wheelchair go for repair. They are going to give me a new set of tires too while they have the chair. We are never bored at my house!!

Thursday, January 28, 2010

Thursday, January 21, 2010

New Medicine -- Better for Edema?


I had discovered that one of the medications that I was taking for hypertension [high blood pressure] called "Azor" was in the category of "calcium channel blockers" and have as the number one side-effect: edema. My swelling, especially around my ankles, has been a bone of contention for me. So on my last clinic visit, I spoke to Dr. Wu, my neurologist, and brought this to her attention. She called my primary doctor and discussed a changeout of the medication. I went to my primary doc last week for my quarterly followup and she told me to stop the Azor and let it go out of my system for about a week before starting the Benicar HCT. I immediately started seeing an improvement in my foot swelling. Now I have begun the Benicar HCT, which contains a diuretic, so it should get even better. While I was at the primary doctor, I got the seasonal flu vaccine, and that night I hardly slept because I felt feverish -- an obvious side effect. Thankfully, it went away the next day.

I think I will be able to manage the cost of the new shoes to go with the new braces, so I will go to the foot doctor in the next couple of weeks. I don't know the results of the overnight sleep test yet, so I don't know if my bi-pap settings will be changed. There is some talk of taking away the bi-pap altogether and switching me to the LTV Ventilator, which is stronger. As I understand it, the bi-pap shoots air in and lets my diaphragm breathe out. But when the diaphragm gets too weak, the ventilator is brought in, because the ventilator not onnly blows air in, but also takes it out, so it actually does the breathing for me. But this is still "non-invasive" intervention. Some patients choose to have a tracheostomy and invasive ventilator, which is a whole other story and a whole different level of care, which means nursing home, or a lot of money [about $100,000 per year] to come home on the trache and vent, which most people cannot afford, and don't even consider an option.

Next week will be six years since my diagnosis. As most of you know, my symptoms started way before then, some of whih I can even trace back a decade or more before diagnosis.

Off-topic: The situation in Haiti is devastating. I am proud of our American troops and volunteer doctors and other medical personnel who have one over there to help. And I must give a shout-out to the Israeli medical personnel who were first on the scene with a fully-equipped temporary hospital, and first to do some rather complex surgeries. In Israel, everybody has to serve in the armed forces, men and women. They go into the service at 18 and attend University after their service. So by the time they get to higher education, they are older than their American counterparts and really know what they want. I have posted a picture of me between two Israeli soldiers [who were so good-looking!] during my trip to Israel in 1987. Enjoy! I wish I still looked like that [sigh]..

Sunday, January 10, 2010

Check Out My Newest Article on Associated Content

How Technology Changed and Enhanced My Life with a Disability
When I was diagnosed with ALS/Lou Gehrig's Disease in 2004, I fought isolation and dependence with the help of life-changing technology. Without it, I would have been institutionalized.
Read More

Tuesday, January 5, 2010

A New Year and a New Decade

I am always happy when the holidays are over, but I have to say that I had a great Christmas Day with the family, and I can't believe how my nephew and two nieces are growing up before my eyes.  I think everybody learned to be calm when I cough, and it doesn't mean I am going to collapse and die in front of everyone.  On the whole, my family and good friends seem to be more tolerant and accepting of the little idiosyncracies of this annoying disease.  New Year's Eve, I went to Nancy's party with the Access-a-Ride connection at Long Island Jewish Hospital to Nassau Able-Ride.  Both rides were perfectly on time and in sync with each other.  Then Louise came to pick us up to take us home.  The worst part is having to take the manual push chair, which is a hardship on the aide, and extremely uncomfortable for me.  I can't recline, tilt, or otherwise make myself comfortable and take the pressure off my butt.  And by the middle of the evening, my braces were killing me.  But next time I know to bring along my medication so I won't get so stiff.

I am sick of talking about "the book" and anxious to continue writing it and also socially promote it on the internet via Twitter and Facebook, but I haven't decided if I am going to create a whole new Twitter and/or Facebook alter-ego, or if I am going to do it with my present identity.  And I don't now whether to bring back my other blog "Of Jews and Chinese Food" to garner interest and/or to get feedback.  As usual, my mind is going in different directions, and I'm all over the place.

I have to make a lot of appointments for the new year, and my ALS clinic is right behind me following up.  First, they want to do an oxygen saturation test on me overnight.  My respiratory therapist and I decided to do it after the new year, and this is after the new year, so I have to call her and schedule it.  I also have to go to my primary care doctor because I need a blood pressure followup, and my neurologist from Cornell called and spoke to her about changing my medication to remove the calcium-channel-blocker in the Azor with Benicar because I discovered that this was causing edema.  So I have to take the fasting blood test to give my cholesterol numbers to the dietician at the clnic and also see my doctor about the medication.  I have to replace the seat belt on my wheelchair, because it doesn't close anymore due to the thicker cushion it now has to wind around.  I prefer to make these calls by Sprint Relay because my friends are all at work and not at a phone all the time, so they end up playing a frustrating game of phone tag, which delays everything for days sometimes.  And sometimes when I sit here and talk through the aides, something gets lost in the translation.  I also hear that CVS is giving the H1N1 vaccine again, so I have to make sure I do that too.  I finally got my replacement cards for my medical insurance since my lost wallet debacle in November.  In fact, by now I have replaced everything, so I am back to "normal".  It just seems that the days fly by and I get very little done.  The other issue of course is my napping during the day, which is an issue of spasticity medication, which has to be addressed with an appointment with the spasticity specialist I was referred to at the Hospital for Special Surgery, to see about alternative treatments.  Also, my settings on the bi-pap will probably have to be adjusted after the results of my overnight oxidation test.  And, I still haven't picked up my new braces and order a new pair of my $150 [not covered by insurance] Frankenstein shoes to go with the new AFOs.