Thursday, December 24, 2009

An Almost-New Wheelchair

It's Christmas Eve and I am getting ready to go to my family tomorrow for the day.  I am honored to be invited to a New Years Eve party on Long Island, but there are challenges getting me there, so I might not be able to go.  The lady willing to drive me has an SUV with no back seat, so I would have to lie reclining in the hatch.  If you are familiar with ALS, you know that I can't breathe in a reclining position.  So I would need someone with a regular car in which I can sit up in a regular seat.  Access-a-Ride does not go that far across the border into Nassau, and the Nassau Able-Ride would connect at Long Island Jewish Hospital, but doesn't operate after midnight, so that takes care of the return trip.   To rent an ambulette would be prohibitive.  There was a man who came up to me recently and gave me his card; he runs a wheelchair-accessible limo service.  I'm sure it's expensive, but I will see if I can find the card.  It's not easy being disabled and not have a wheelchair van.  Those of you who do should count your blessings.

I received my modified wheelchair and got to give back the horror show loaner that was fit for a 350-pound man, and neither reclined, tilted, nor elevated.  Wow, if ever I felt my hands were tied!!   I couldn't nap, which was a real hardship, and I could hardly reach anything!

Enter my modified wheelchair, which has power footrests, so now I can elevate my feet to alleviate the swelling.  It also has pads and guides to help me sit straighter in the chair, rather than leaning over to one side and it keeps my legs straighter rather than splayed.  I look less freaky and more like a human being.  However, I am higher, so I've had to get used to that, and the seatbelt that I recently paid $46 out-of-pocket to have installed, is too short.  So when the wheelchair company comes after the beginning of the year to install my new tires, I hope they will be able to install a longer seatbelt.

Every five years we are entitled to a new wheelchair, but I am not due for that until 2011 because I got this chair in 2006.  However, I am distressed to learn that MDA had to eliminate the $2000 grant to first-time wheelchairs.  Without that, I never would have been able to get my chair, because the co-pay on a $25.000 wheelchair was covered by this grant.  Every charity and non-profit agency has had to budget and remove certain services in this recession  Both MDA and ALSA have had to eliminate their transportation program that gets many patients to the ALS clinics.  Just another casualty of the economic crunch!!

Sunday, December 13, 2009

Clinic Visit -- AFOs, nutrition, wheelchair, etc

So I went back to the clinic at Cornell, and this time I met the Physical Therapist for the first time who told me that the brace [AFO] I am wearing is really for foot drop, not for the ankle pronation I have.  So she said that I should only wear the AFOs when I have to stand, and not throughout the day.  She also said I am on way too much medication, most of which isn't even working anymore, and is managing to zap my energy and zonk me out during the day.  She and Drs. Lange and Wu are referring me to a spasticity specialist [they used the word "guru"] at the Hospital for Special Surgery to explore alternative methods such as botox injections, and they are really pushing the idea of a baclofen "pump", which I would use to put the anti-spasticity drug directly into my foot when I need it, rather than through my bloodstream to be wasted on the way down, and cause side effects like drowsiness.  So I will see about all this

They are finally coming to take my wheelchair this week to upgrade and adjust it, including power footrests that I can use to elevate my feet.  I have known that I have not been sitting comfortably in that chair for years, and it is nice to have someone finally listen to me, in fact mention it at first sight of me, because I had given up trying to convince any professional that all was not right.

As for nutrition, the jury is still out until I go to my primary care physician and get my cholesterol and blood sugar numbers again.  But the dietician agrees that if I am going to put 4-5 cans of enteral feed down my tube, I need the lowest calorie nutrition possible. 

My mantra has been not only "when one door closes, another door opens", but also the second part of that, which is "sometimes we stare at the closed door so long, that we fail to see the door[s] that have opened for us".  I have wasted so much time in my life trying to salvage relationships that cannot work, that I could have spent on new projects, jobs, or people. 

Thursday, November 19, 2009

Thanks, Gripes, Wallet Followup, and Other Frustrations

First of all: Things I am thankful for:
Sprintip which allows me to do relay phone calls.
My aides who have stuck with me for years, when there are a lot of easier cases they could be working on, like nice little old ladies who really don't need too much help, just someone to be there.
My family, who invited me for Thanksgiving dinner
Louise, who comes with me to support groups and comes over to help with bills.
Judy, who comes to visit and take me to Starbucks, or further if weather permits, and who came with me to see "Ragtime" on Broadway a couple of weeks ago.
My dad, who helps me make ends meet with grocery money, and a new fridge he bought for me this past summer.
My parents who taught me to do things for myself and not depend on others, an independent spirit which got me through this past week, when everybody was so busy, and I needed to make phone calls to replace everything that was in my wallet.
Mary Knudson, whom I have never met, but who has been there for me.
Maddy DeLeon, who made some frustrating phone calls for me trying to track down my wallet, and who was willing to drive to Brooklyn's armpit to retrieve it for me. She is my angel in other ways too.
If I forgot anyone, please forgive me
Okay, if you don't want to hear the gripes, and think I come off as bitter and hostile, stop reading here, because the reality is that life with ALS is full of frustrations and dealing with stupidity.  But please read on so you can see that I am not griping for me, because I am rather strong and I can take it.  But think of the little old people who don't question anything, and any other people who don't have the resources and/or presence of mind that I am lucky to retain.  One can only imagine the damage done by people who are in positions they should not be in, because they are either uncaring, incompetent, or just plain ignorant or stupid.  Or maybe they have been in their jobs so long, underpaid and overworked, ready to retire a long time ago, but stuck in a job they resent or hate, and know that in this bad economy, they have few options.  Whatever the reason, the sufferers are the people who are in most need of people who care, have the answers, and are conscientious in their jobs. Not to mention that any of you reading this, could become disabled and/or sick, and could have to deal with these frustrations yourselves.

First, Access-a-Ride and their eight sub-contracting companies.  This paratransit service in NYC is wonderful when it works, which I must say is often, is the best thing to happen to people with disabilities.  It is door-to-door service anywhere within the five boroughs.  And it even connects with Nassau Able-Ride, so you can even go to Long Island. When it is efficient, it is heaven.  If you are in a wheelchair, or unable to climb steps, you can use the lift.

But they have their problems, and this month it has been the phones.  I reached home on Monday from an appointment in Manhattan, at 4:15.  The Access-a-Ride lines to book a trip, close at 5:00.  I have often made bookings this late, even at 4:45.  I had to book my trip for the next night's ALSA support meeting.  For the next 45 minutes, each time I [or the relay operator] dialed, we got a recording "your call cannot be completed as dialed.". At 5:05, just for the hell of it, I dialed and got right through, but guess what?  They don't take trip reservations after 5:00.  So, I wasn't able to go to my meeting at all.
Representatives from the DNNYC,  [which is a wonderful organization to get involved with, if you are disabled and live in NYC], told me that AAR is going through some issues with their phones, exacerbated by internal struggles which have left them understaffed. I hope they resolve these issues quickly, because so many people are dependent on this service, and I wouldn't be able to go to a weekly appointment and monthly support groups without them.  And forget about any enjoyment like theater or visiting people.

This turned out for the best, since I woke up Tuesday morning with a raging cold.  Next rant:  my apartment had been like an icebox for days.  So I called the super, who said there didn't seem to be anything wrong.  But then he opened the living room radiator to fnd that the valve was bad and there
was no heat coming through.  He fixed it within an hour.  One of the better things that happened this week.  I really like my super.  What this is going to cost me, I will find out when I see the maintenance bill. And people with high blood pressure can't take decongestants, so I am pretty miserable, although getting better.  I just pray it doesn't turn to pneumonia.  Using the cough assist machine   can help with that.

And, speaking of AAR, one of their sub-contractors, who told me they had my lost wallet, and to which I took AAR on a cold Saturday morning to retrieve my lost property, claims they don't have itafter all.   My friend Maddy made a few followup calls, and was willing to go there again once they said they had it.  But, alas, my wallet has slipped into another dimension.  No one was available to assist me that weekend.  I had no money, no ID, no credit cards.  I went to my local Citibank branch, and got a temporary ATM card on Saturday afternoon, and waited for the permanent card, which I have since received.  All weekend long, and into the beginning of this week, I managed to report everything lost and requested replacements, either by relay calling or websites.  With the exception of one thing: my Medicaid benefits card.

So here's the most ridiculous frustration of all.  My Medicaid case worker is the epitomy of the person I described above.  He has made so many mistakes, I couldn't list them all, right down to sending a letter threatening to take my homecare away due to my "refusal to cooperate" with the necessary forms.  I had submitted the forms to his office but someone neglected to tell hhim about that.  I can only picture some poor frail octogenarian getting that notification.  Anyway, if you see a compact car with the personalized license plate "Mambo Man", wave to my Medicaid caseworker, [I'm not kidding about this].  So I called Mr. Mambo Man to ask him to help me get a replacement for my Medicaid card and he said "you are not on Medicaid anymore.  You left the system".  Huh?  This was news to me!  So I told him he must be mistaken, and gave him my social security number.  He admitted he was mixing me up with another Cohen [probably thousands of Cohens].  So then I asked him again how I go about getting my Medicaid card replaced, and he said "call 311 [aka "citizens hotline"]  This is a number to report heat outages, ask touristy questions, and the like.  I was puzzled, so he said "There is an office on 34th Street, and I will give you a phone number but they never answer the phone".  That didn't sound useful at all. Then he added "there is a procedure to follow, but I am not familiar with it, so call them.  So I scratched my head, thinking "shouldn't my Medicaid caseworker know the procedure for replacing my card?  hmmmm....

So, for those of you who tell me I am bitter, hostile, ungrateful, and negative......don't even imagine how these things are for me to deal with.  Think of your great-aunts and uncles, grandparents and frail neighbors dealing with this stuff.  And even think of the young-ish person like me, who has to deal with a devastating diagnosis, total dependence on others, loss of abilities, and in the case of something like cancer -- pain and weakness from treatments or surgery -- and imagine having to deal with these frustrations on top of an illness.  Maybe then you can have some empathy for the frustrations of bureaucracy.  And now they come up with so-called new guidelines for breast-cancer testing.  Don't get me started...........

Thursday, November 5, 2009

Go Yankees, AFOs/Braces, Flu Shots, Fawssit Shower Unit,Missing Wallet

The New York Yankees are the World Series Champions! Those of you who know me, know that I am a Mets fan, but when the Mets' season ends, I either stop following baseball, or if the Yankees are in the World Series -- which unfortunately happens more to them than the Mets -- I just root for the Yankees, who are the other New York team. I don't know why I am such a Mets fan, but it's a combination of underdog favoritism, living in Queens for almost half of my life, and being from a Brooklyn Dodgers family [you see, the Yankees and the Dodgers were enemies when the Dodgers were in Brooklyn until the year I was born in 1955, and no self-respecting Dodgers fan became a Yankees fan. Conveniently, the Mets were born ten years after the Dodgers left, so that presented new opportunities for the Yankee-haters]. The ticker-tape [or should I say the toilet paper] parade was fantastic. And it's always nice to look at Derek Jeter, I must admit!!

I finally got fitted for new AFOs [ankle-foot orthotics]. The ones I have are causing me a ton of agony. The ALS clinic had wanted me to wait until the wheelchair is fixed before I got new AFOs, but the wheelchair approval is taking longer than expected and I can't wait anymore. Also, my night aides have been using the Hoyer lift to get me in and out of bed, and that has saved my wounded feet some.

My primary-care doctor ran out of flu-shot serum, so did the ALS/MDA clinic at Columbi, and the Cornell clinic, where I am a patient, never even got any. At Cornell, they are only giving the vaccine to in-patients. So they are giving me a "high-risk patient" letter to bring to Walgreen's or the NYC Board of Health.

Next week, I am getting the hand-held shower unit and the correct shower chair and I will be able to use the Fawssit portable shower I received from the ALSA loan closet.

My wallet is missing. Long story, but I am sure I dropped it on Access-a-Ride, whose office old me they had it and I had to come to collect it. So my aide and I took Access-a-Ride all the way there today, and nobody knew anything about it and nobody could find it. So here I am calling credit card companies by relay operator to cancel the cards and now I have to wait for new credit cards, Medicaid and Medicare IDs, Access-a-Ride ID. Luckily I am only out about $20 cash and of course a wallet. Every phone call takes me ten times longer than a healthy person, and the whole process is so aggravating. Fortunately, I was able to go to my Citibank branch to get a temporary debit card, but I can't use it at the store. Without that, I would have no money. I feel so out-of-sorts and we didn't need a three-hour trek to and from an armpit area of Brooklyn on a Saturday morning. They told me to call someone named Leslie on Monday morning, because my wallet might be in a safe, and he is the only one who has the combination. When I called Thursday night, the man I spoke to said "come in any time and we will have it for you". But the number to book a trip was already closed, and I had to call on Friday for the trip on Saturday. I am totally exhausted!

Saturday, October 24, 2009

Soupy Sales: Master of the Pie-in-the-Face
The slapstick comedy of Soupy Sales in 60s TV was way ahead of its time, and became a model for shows like SNL.

Friday, October 2, 2009

New MDA Clinic, Wings Over Wall Street, Good Voting Experiences

Do you know that under present laws, a lot of patients with rare diseases can't be included in clinical trials, because public health insurance won't pay? Read how a proposed law, if passed, will change all that

I always suspected ALS was connected to immunity and the immune system. This article will tell you I was right

I am attending the new MDA clinic at Weill-Cornell/NY Presbyterian Hospital, headed by Dr. Dale Lange. They have a wheelchair vendor there, who was horrified, along with the occupational therapist, at the way I was seated, and the degeneration of my hip that resulted from this. I am getting a whole wheelchair revamping, but as usual the paperwork takes a load of time, so I am waiting.

I was privileged to be invited to "Wings Over Wall Street", an event that has raised millions for MDA/ALS research. Pictured above are the event's founder, Warren Schiffer and myself.

I am also happy to report that my voting experience on the new wheelchair-accessible BMD [ballot marking device] at the polling place in my neighborhood, was a good one. The machine worked perfectly for both the primary and the runoff, and the staff was well-trained. I think I was the only person in the whole city who had anything good to say. Reports from other people with disabilities were not as positive as mine. It's amazing that Queens did what Manhattan couldn't.

Thursday, September 17, 2009

Always Check Your Medications Side Effects and Contraindications

I have been noticing my ankle and foot edema has gotten so much worse in the last six months, and even worsening the last three months. Nothing I seemed to be doing, was helping. I wear the T.E.D. stockings from 8am until at least 6pm, and sometimes until I go to bed at 10 or 11. I periodically raise my legs, and even try to move them as much as I can. Furthermore, I have been having my blood pressure checked at physical therapy, and it's been as low as 85 over 50.

So I started to do a little research of my own and saw something that said "causes of edema" and listed as a cause "certain medications". So I looked through this list of medications and saw "calcium channel blockers" which is one of the classes of blood pressure medications. About six months ago, my primary care doctor had added a drug called Azor. When my blood pressure failed to go down enough, she increased the Azor. Well, my edema had started to go crazy about the time she added Azor, and got even worse when she increased the Azor three months ago. Well, Azor is a calcium channel blocker and was listed as one of the drugs whose side effect is edema.

Since my blood pressure hads been low lately, I went to see the primary care doc and told her about the edema and what I read about the Azor, and how my blood pressure had been so low lately. She halved the Azor dosage, and the edema has gone down a little, although I would like it to go down lower.

But, case in point: always read about your new medications, especially the side-effects, contraindications, and interactions, especially if -- like me-- you have multiple doctors prescribing your medications!!

Tuesday, September 8, 2009

"The Enthusiast" by Charlie Haas
This main character in this Charlie Haas novel edits quirky "Enthusiast" magazines, and deals with the consequences of an attachment to ideals and self-discovery.

Tuesday, September 1, 2009

RIP Edward "Ted" Kennedy

This is a few days late, but through all the memorials for Teddy Kennedy over the weekend, I learned what afriend he was to people with disabilities. In fact, there might not be an Americans with Disabilities Act, if not for Senator Kennedy, and he was a driving force behind the Family Leave Act, among others. I have said many times how the ADA has made my life so much easier, and someone who was disabled before 1990, can really see the difference. We have a way to go, because now members of Congress are pushing the envelope toward the concept of "visitability", which is the concept that everyone's home and every building should be accessible whether or not there is someone who lives or works there, but for the benefit of anyone who has to visit. I can't tell you how many times people with disabilities are invited somewhere, only to find out they can't attend due ro the inaccessibility of the venue/home

Anyway please read my tribute to Senator Kennedy by clicking here.

Wednesday, August 19, 2009


I am really excited about a new Indian restaurant in town. Sajni is on Queens Blvd around 65th and they have the most awesome buffet for lunch -- inexpensive! The owner knows all his clients, and they play Bollywood videos while you eat! And most of it is soft food that is easy for me to eat! I am in love!

Unfortunately, my other favorite newish place, Tierra Sana, lost their hold and couldn't stay afloat. It was good vegan food, with wi-fi and very East Village decor, but it was a little pricey. I couldn't manage to get people to go with me, probably because of the price or maybe too esoteric. Obviously not enough support from the neighborhood. That's why I am happy to see such support for Sajni.

Summer is finally here, about 2 months late, but I'll take it. I am enjoying myself on "concrete beach" in front of my building -- no sand or ocean, but lots of people-watching and sunshine, squirrels and birds.

Thank you for all the feedback on my post of 7/26 re the ad for MND/ALS with Sarah Ezekiel, which was made for British TV. In case you missed the post, you can chcck it out any time and follow the link to watch the video

In the meantime, you can follow me on Twitter
and/or "friend" me on Facebook

Thursday, August 6, 2009

My PEG tube replacement

I was surprised recently when I expressed to someone that I didn't have the time to do something, and she said "why, what do you do all day?". Anyone who reads this will see how I can literally be out all day for a 5-minute procedure. When you have to rely on Access-a-Ride or an ambulette, you spend a lot of time sitting around and waiting. And, anyone who goes to a Medicare/Medicare/HMO doctor can attest to the fact that a 30-minute appointment means a 3-hour ordeal of waiting in the waiting room, then the exam room, then waiying again while the doctor will come "right back", and is attendng to other patients who have the same appointment as you.

I've learned that, when blogging it is not cool to mention names of professionals or institutions, or even people, unless you don't mind being googled and asked to elaborate, or even sued. So email me privately if you want names and I will reveal if I can. If I have something really nice to say, I will of course mention names.

Anyway, this time, I had to specifically request that the hospital change my ambulette company because the ambulette company they have been sending does not have the mechanical lifts. Instead, they sent vans with ramps that are used to using with manual wheelchairs that they push. But the ramps are steep and dangerous for an electric wheelchair. I had to say a prayer as I got to the top and the wheelchair literally jumped into the van and risked ramming into whatever was in front of it [sometimes another wheelchair passenger]. So that worked out, even though I was supposed to be at the endoscopy registration by 10:30 and the ambulette was supposed to come to pick us up between 9 and 9:30, and didn't arrive until 10:15 and picked up someone else, taking a roundabout route to the city, finally gettng to the hospital after 11. Louise traveled separately, and was there for a while when we got there.

Then began the paperwork, signing and filling out multiple pages and receiving my 100th packet of papers outlining patient privacy. This was in a room that was so crowded that I had to stay outside in the hallway with the wheelchair. The hospital I went to is very old, and very drab. The walls are in bad need of a paint job and the nurse directing "traffic" looked like she really hated being there. She handed me a locker key, told me to enter a depressingly dark locker room whose dressing cubicles couldn't fit my wheelchair, and I had to take off everything from the waist up and put on a hospital gown. I thought the whole atmosphere was kind of depressing for people going through procedures which could be very frightening. My initial PEG tube placement was in this hospital, and I recall being alone in recovery and the whole next day in a hospital room with a hospital staff that yelled at me because they thought I was deaf, mentally challenged, or both. This time, I had a bunch of people standing by and promising me that would not happen again. Still, I dreaded the possibility of staying overnight.

When my GI doctor came in, he deferred judgement to a nurse named Frank, who had been there for my first procedure, as well as when the tip of my feeding tube had to be relaced about 2 years ago. Anyway, he said to the doctor: "this thing was put in 4 years ago. There's no way it's not gonna crack." and he turned to me and said "you're gonna have to be put under so the doctor can do it endoscopically". The doc said "I know that's not what you want to hear". And I wrote on my board "please please try the other way first", and he said "Well, we'll try, but I don't think it'll work. This tube is old!"

So they had me wheel myself in my chair and tilt it back and recline. Then I saw the anesthesiologist come in -- I recognized his face and South African accent from five years ago. They let Ellita come in and hook up my bi-pap breathing ventilator [which we brought from home]l, which was a good move. They told me they were going to give me a light anesthesia, which turned out to be Michael Jackson's favorite-- propofol aka diprofan. I remember him sticking the needle in my hand and the next thing I heard was "Fern, you're all done". I went to the recovery room for about an hour, and I was free to go.

By this time it was after 1, and the recovery room nurse called my ambulette to pick me up and said they would pick me up at the emergency room entrance. Now, just to say why I take the ambulette in these cases instead of Access-a-Ride. To take the later, you have to book one to two days in advance and tell them what time to pick up for the return. With certain doctor appointments and a procedure that I just described, it is impossible to know exactly when I will be finished. I my case above, I could have even had to stay overnight. So it was impossible to book a return pickup time. But this turned out to be the ambulette ride from hell.

First off, we were waiting for over an hour at the emergency exit like we were told to do. Suddenly I got the idea to have a lok at the vehicles standing at the corner, about 3/4 block down the street. Sure enough, my ambulette was waiting there. I called Louise and Ellita to come down the street [they'd been waiting in the hot sun] and Ellita and I boarded. There was already a couple on board, the wife of which was in a wheelchair in front of mine. We had another pickup along the way, and we ended up getting in my door about 4pm and rushed out for an early dinner at a fabulous new little Indian restaurant on Queen Blvd. So out for about 6 hours for a 5-minute procedure.

But, here's the "hellishness" of the ride: the couple who had been in the ambulette when we boarded, looked like they were right out of "central casting". They could have played the part of trailer-park residents. The husband had no front teeth, scraggly hair and tattoos. His skinniness made him look almost like a junkie. The wife, who I inferred was the patient, looked unhealthy indeed. I thinnk I overheard somethhing about dialysis, and they seemed to be regular clients who knew the driver with familiarity. When we arrived in Astoria, Queens to let off the fifth passenger, the husband also got out of the van, motioned for the driver to wait [which didn't make us happy, since we were dying to get home, and I hadn't eaten since 11pm the night before]. Well, this man lit a cigarette, took a few drags himself and then, to my dismay, handed it to his wife sitting in the van in her wheelchair in front of me. It's impossible to protest when you can't speak and especially when you're choking from the smoke. So Ellita told them I had respiratory problems and they finally put the cigarette out, not a moment too soon.

By the time the driver started up the van, the front was full of smoke and I began coughing up a storm. When I stiffened up and couldn't help kicking the woman's wheelchair, she went beserk on me. The husband saw I was choking and said to Ellita "is she okay?" and Ellita said "She's coughing from the smoking!" The woman said "well what do you want me to do? I had to have a smoke!" and the man said "Oh, if I knew, I would'na done that!" But he didn't exactly ask us if it was okay.

Here's the best part. When we arrived in front of my building, they both yelled out "this is so nice!" and the woman said to Ellita "I would like to live here. Can you tell me how she [meaning me] got into such a nice building? How can I get in here?" And Ellita said "you have to buy a co-op"
"Oh, it's nice to have money" she said.
Ha! She should only know!!

Sunday, July 26, 2009

What Do You Think? Should This Ad be Banned?

My friend Sarah Ezekiel is a PALS who lives in London. There is a TV ad she starred in, a public service announcement from the MND Association in the UK. MND stands for Motor Neuron Disease, which is what ALS/Lou Gehrig's Disease is called outside of North America. The ad is disturbing, but no more disturbing than the PSAs for stop-smoking campaigns, which show people with laryngectomy holes in their throats, shots of rotting lungs, and people gasping for air. You can read the article [link above] from a UK newspaper, and you can watch the video at this link

Disturbing? Yes. It's supposed to be. Scary? Of course. But you can turn the video or the TV off. We can't turn off ALS/MND. Why is this disease so scary to people? I'd be interested in getting feedback from people, especially from people who don't live ALS/MND firsthand, like patients and caregivers.

Thursday, July 23, 2009

New Study Shows Agent Can Improve Muscle Strength, Size, in Mouse ALS Model

click on the link above for information about a phase I trial at Johns Hopkins' ALS Packard Center in Baltimore of a new agent which is believed to slow down muscle-wasting in ALS patients.

Tuesday, July 21, 2009

PEG Feeding Tube Replacement, etc.

I haven't updated in a while because I've been wasting too much time on Facebook and Twitter [fec139, if you'd like to follow me].

A lot has been happening. Of course, the July 4 Yankees vs. Blue Jays game, which was part of a nationwide collaboration between Major League Baseball, was wonderful [see link in previous post for the full story].

It's been time to replace my PEG [feeding] tube. It is leaking and kind of stinky if you get your nose up to it, although undetectable through my clothing. A PEG tube usually lasts for about 2 years, but I have had mine for almost four. The worst scenario is if the tube breaks, or otherwise causes a trip to the ER -- especially at night or during the weekend -- only to be at the mercy of an attending or intern at a local hospital, where they know nothing about ALS. I've been there and done that, and have no desire to repeat that otdeal. The nurse at the ALS clinic told me it would probably just be able to be done right in the gastroenterologist's [GI doctor's] office. This turns out not to be true. He has to do it in the Endoscopy suite at Beth Israel Medical Center [BIMC]. Now, here is what frightens me: there is a 90% chance that the PEG will be able to be replaced with no complications and no anesthesia. But it's the 10% that frightens me. There is a 10% chance that the tube will crack and then they will have to put me under anesthesia and go in through my esophagus. I am terrified of thid because my FVC [forced bital capacity] respiration is so low. I had the original tube put in so early in the disease, as advised, because I was told to do it while I was still strong enough.

So, I am hoping I am one of the 90% that can have this done without anesthesia and get up ad leave the hospital that same day. Everybody pray for me. Besides, I have Mets tickets at the new Citifield on Sunday, August 2, which is two days later, and I am determined to get there!!

Thursday, July 16, 2009

A Day of Pride and Hopefulness at Yankee Stadium

Read my latest guest-blogger post on the ALS Association of Greater NY Blog, about my experience at Yankee Stadium on July 4, which was the 70th anniversary of Lou Gehrig's "Luckiest Man" speech.

Sunday, July 12, 2009

How Michael Jackson and MTV Changed Our Lives
Part memoir and part history, the evolution of the music industry in the MTV/Michael Jackson era.

Saturday, June 27, 2009

Volunteering to Make Yourself Feel Good

A while ago I wrote an article for Associated Content entitled "The Payoff of Volunteer Work". If I do say so myself, it's good reading. And I don't recommend reading it just to promote myself, but rather to give some perspective to an online exchange I am having on Facebook with another patient. She was saying that when people visited her or helped her out, some were only doing it for their own benefit. I agree, but I don't have a problem with that. I even have a friend, Maddy, who says that asking her for help is actually giving her some pleasure and fulfillment. So she begs me all the time to call on her for assistance, which she has given to me in leaps and bounds. I still feel uncomfortable asking for help, even from her, and from other friends who have been so generous.

But let's face it: aside from figures like Mother Teresa and Mahatma Gandhi, we are not totally altruistic. We all reap benefits from doing good, whether it be perceived better place in heaven, a tax deduction, something to put on a work resumé or a college application, satisfaction of community service requirements, opportunity to meet people, easing your own loneliness, or just a good feeling. Even easing a feeling of guilt for some wrong you have committed in the past, is valid reason for helping someone, like the former Ku Klux Klansman who was recently on television saying that he now volunteers to help poor blacks in the South.

I did a lot of volunteer work before ALS. And I won't lie: I reaped a lot of benefit. I did the 12-mile Walk for MS, and the March of Dimes Walk every year. These walks gave me exercise, the chance to see thousands of people, and dozens of free tee-shirts to show for it. I volunteered for Broadway Cares/Equity Fights AIDS very often. Through BC/EFA I met a lot of cool friends, two of whom I am still in touch with 15 years later. I also met celebrities volunteering at BC/EFA events, and every once in a while they threw the volunteers free theater tickets. I got to meet people I would never have met otherwise, and I even got invited to private parties through the friends I met. I even volunteered as an usher for off-Broadway shows. Unlike the Broadway shows, which use paid union ushers, many off-Broadway theaters and regional companies use volunteer ushers. It's a great way to see the show for free because once you seat the patrons, you can take a seat and watch the show. I've enjoyed free food, gift bags, volunteer parties, pictures with celebrities, and other freebies by volunteering at events. Sometimes I received the same fancy gift bags and fancy food enjoyed by the rich and famous who had paid several hundred dollars to attend. When I worked the phone bank at the Gay Mens Health Crisis to recruit people for the annual AIDS Walk, a local bakery donated baked goods, soda, and sandwiches every night. Free food is always good.

What do you get from volunteering with an ALS patient? You won't meet celebrities, at least not with me. You'd have to somehow find satisfaction from the fact that you're making someone happy to get out or have a little companionship. You would have to have a lot of patience. Are there better ways to spend your time? Sure! But I don't question anyone's motives, although the lady I was conversing with this morning has a problem with certain motives, and that's her prerogative. The only motive I have a problem with is no motive at all, because that leads to resentment. I don't want anyone saying "What am I doing here?" or "Why do I have to do this?" or "How do I get out of this?". I'd rather be alone than know that anyone is doing anything for me that they really resent. I don't think anyone owes me anything, even though I do get angry sometimes that some people from my past have disappeared, and hurt that others I have felt close to in the past do not feel close enough in return to care about me. Maybe it's hard to find out that my feelings are not returned, but maybe I needed to find out. When the going gets tough you really do find out who your friends are, and sometimes they're not who you think they are. But if we both get something out of our association -- I get help or company, and they get satisfaction -- it's beneficial.

Tuesday, June 23, 2009


I knew the day would come when I would have to say goodbye to my tub-slider. It had been loaned to me from ALSA and it has been sitting in my storage space in the basement, in anticipation of the bathroom renovation which never came, and never will. So ALSA called and asked if I had the renovation yet and if I were using the shower equipment, which retails for $1800, and which can't work n my bathroom the way it is. I had to admit that I wasn't using it, and give it up to someone who needs it. It's only right, but it was tough for me to face the realization that I won't be able to get in the bathroom again. On Monday morning, I have a night aide who graciously stays another 1/2 hour so that she can work with the morning aide to move me a few steps into the shower and give me a shower and wash my hair. But with more room in the bathroom, they would be able to wheel me in a special chair and slide me in the shower. That way, one aide could do it, and I could shower every day. I feel less than human, but I will have to get used to it, because I will never be able to get $7,000 together to renovate.

I have connected on Facebook with a lot of my former students, and classmates from high school. My former students are all telling me how influential I was in their lives. Veteran teachers always told me in my darkest hours "five years after they graduate, they will come back and tell you that you were a favorite teacher. Yup, that's about right. As a matter of fact, several of them have become teachers themselves, and one student -- one of my most talkative and disruptive girls -- told me her students never shut up and it drives her crazy. She apologized to me for being such a pain, because now she's on the other side and knows how it feels. Funny how life turns out.

Sometimes I wish I could wear a sign saying "I had a life before this. I was slim and cute too. I didn't always look like this. I was a teacher and spoke three languages fluently, and studied three more. There's a brain in this broken body. Talk to me." But it wouldn't do any good. On the internet people don't have to look at me, so it's easier. When people email and ask how I am, I tell them "great!" Anything less than that is misinterpreted as bitter. I've found out that I am not allowed to be sad or angry, and I must be an inspiration at all times. It doesn't seem fair that healthy people are allowed to scream and complain, but I am told that nobody will want to be around me unless I am grateful to be alive, realize that there are people worse off than I, and am an inspiration 24/7. I don't know why my healthier counterparts are allowed to forget how lucky they are, but that's the way it is.

I am grateful to have celebrated another birthday earlier this month. On my birthday weekend, one of my aides took me to lunch, her mother bought me a top. Then my family came out to Queens and took me to dinner. The following weekend, Louise and Judy took me for Thai food. Of course, I am very grateful for that.

My braces[AFOs] need to be adjusted, and my shoes have stretched out, making standing very painful until it gets fixed. The shoes are not covered by insurance. Although I can pay the $150, it kills me that products for disabled people are so overpriced. My physical therapy is managing to stave off painful spasms, and the therapists get me to stand and balance, which feels good. I am working out with light weights to preserve the muscle tone I have. I am still working on a program of nutrition to reduce my sugar, stay healthy, and drop the weight I gained. I'm discouraged by the fact that the nutritionist at my clinic hasn't gotten back to me according to her promise to investigate an alternative to the sugar-filled products out there. And my wheelchair seatbelt broke again, but Medicare won't pay for another one, so I have to make my own arrangements for the repair.

Thursday, June 11, 2009


I have been doing a lot of research on nutrition. My triglycerides are high and I am really bothered by the amount of sugar in Osmolite, which goes in my feeding tube. I am still plagued by my new obesity, which is not only unattractive but extremely uncomfortable for me and for the aides who have to transfer me. When I am at physical therapy, the room is lined with mirrors and it depresses me to see myself. It further disturbs me that there don't seem to be any alternatives out there. They are all filled with sugars! I want to make my own mixtures, so I am looking at recipes. Then, how to get the aides to keep mixing up these concoctions for me?

I think these tube feeds are made for people whose weight has gone down to nothing, and that is not the case with me. I know I am going to get a bunch of emails from well-meaning people who want to make me feel good by convincing me that I am beautiful anyway, that my weight is not important. Thank you, but It's not about that. When you can no longer apply makeup, take regular showers, insert contact lenses, and have to be confined to a wheelchair, obesity is not something you want to deal with. It's unhealthy, unhygienic, and yes unattractive to someone like me who has never had more than 20 pounds to lose, and that was optional because it was a matter of clothing no longer fitting, and never affected my health.

This is not just some shallow desire. It is a challenge I need to handle. I have been researching mixtures that will be easy to blend up and provide all the nutrients I need. I have been taking supplements. And I have been trying to do exercises in the wheelchair to fill in between my twice-weekly physical therapy sessions. Suggestions?

Thursday, May 28, 2009

iPhone or iPodTouch Can Be Assistive Communication Device

I have wanted an iPod Touch for a while now and I am saving up to get one, but here's a new reason for me to want one: You can buy an "app" for the iPhone or the iPod Touch called Proloquo 2Go and have a small portable text-to-speech device. They are using this also for autistic kids and stroke survivors. Of course you have to be able to use your hands, but it beats lugging around the heavy Mercury, especially on short outings, to the store for example. Click on the title line, above to read the story. Now, I have to do what I can to get this!

Friday, May 22, 2009

Update May 22, 2009

I feel like I have been running around the past few weeks, but it has been a great few weeks of going places and seeing people.

On Mother's Day, I took my caregiver Ellita to Applebee's for a Mother's Day lunch. And one Friday night Judy visited and we went to Anna's on Queens Blvd. Any opportunity to get out of the house and see people, is so welcome! I am grateful for the fun I had this spring. The three Saturdays in Valerie's van, two to the beach, were glorious!

On May 11, I was invited to a research reception hosted by MDA-ALS Division and Wings Over Wall Streetat Chelsea Pier. One of the best parts was utilizing the hour before the event started to explore the pier, which I hadn't visited in years! But I couldn't believe how nice this reception was, and how everybody from MDA and Wings treated me with such attention and caring. I felt so comfortable.

I also attended my annual shareholders meeting at my co-op. I had to laugh when the management company talked only to my aide -- "tell her to sign here", "ask her...etc etc...." the ignorance of people toward the disabled still makes me frustrated, but I don't express myself too much anymore because a) it's an exhausting waste of my precious energy, b) they never get it anyway, and c) when I try to to talk it makes it worse because it scares them, they think I'm mentally challenged, or they think I'm crazy, or all of the above, and if I write on my board, it takes too long. I rely on the aide or friend who is with me, to say "She can hear you; please speak to her", and I am so grateful when that happens. Caregivers and friends of people with disabilities have to advocate for those who can't do it themselves, And the second indignity, if you will, was that my ballot was already signed by the co-op president. "Hahahaha" I said to myself, "I'm here, and I am voting"

May 16 was the 2nd annual Manhattan Walk to D'Feet ALS along Hudson River Park from Charles Street to West 54th Street. Despite rain in the early morning, and dreariness at the beginning of the walk, it turned out to be a beautiful day. I had two new members of Fern's Fighters -- Jessica Aguilar, one of my former AES students, and her friend Jennifer. After the walk, we went to grab a bite. This was a reality check, especially for Jessica and Jennifer. We went to Tenth Avenue between East 56th and East 57th Street. There must have been about 10 reasonably-priced places to have lunch, and I could not get into any of them, because of steps and no ramp. A Boston Market looked promising because they had about 5 steps going up and a wheelchair lift. But, as usual in places with lifts, the lift "wasn't working" , which usually means a staff too lazy to get the key and operate it, or just too lazy to report it broken and get it fixed. The thing with the ADA [Americans With Disabilities Act], is that there is nobody going around to check that retail establishments are complying; they wait until someone puts in a complaint. I may send an email to the corporate website, but I am not about to fight local eateries in a neighborhood that I don't even frequent. So the others went inside to eat, and I waited outside while Ellita got me a takeout meal for later. But I kept thinking of a scene from a movie that I saw recently that took place in the South in the 1930s, where a singer was touring, and couldn't go into certain restaurants that wouldn't serve African-Americans. So his white band members went in to eat and brought food out to him. Hmmm, do you see a parallel here?

One disappointment was that, for the first time in four years, I could not join the Ride for Life, because they did not come within the five boroughs this year. They stayed in Long Island, primarily in Suffolk County. My plans to meet up with them in Nassau County by an Access-a-Ride and Nassau Able-Ride had to be scrapped because of an uncertain ending point and time. People with wheelchair vans don't know how lucky they are. Those of us who rely on public paratransit, though we are fortunate to have it in this area, have to give times and places for pickup; we can't be spontaneous at all.

My quarterly visit to the ALS Clinic at Beth Israel was positive. I am pretty stable -- legs pretty useless, but arms even stronger since physical therapy. So the doctor wants me to continue PT, since it is benefiting me. I have to get my braces adjusted because they are cutting into my feet and killing me. And the shoes I wear with the braces are very stretched out, adding to the problem. So off I go to buy another pair of grossly overpriced shoes. Oh well.......

Thursday, May 21, 2009

What Do I Do, What Do I Say?

Click on the title above to read my newest blog entry, which was published on the official blog of the ALS Association of Greater NY.

Monday, May 4, 2009

Update May 5, 2009

Last Saturday was the third and last Saturday in Valerie's van. I decided that, even though I live in a Russian neighborhood, I can't stay away from hearing Russian spoken, and stores with Cyrillic signs [which I can still read, by the way, from my Russian class at Long Beach HS -- thank you Mr. Ritter]. So when we realized it would be in the 80s, I suggested we set out for Brighton Beach. Now, this is a different population from the immigrants in my neighborhood. The Rego Park immigrants are from the Central Asian former Soviet Republics -- Uzbekistan, Azerbaijan, and Kazakhstan. The immigrants in my neighborhood started to immigrate maybe 20 years ago. They are country people from the farms -- peasants. They dress in old-world clothing, and my neighborhood looks like a scene from "Borat" or "Fiddler on the Roof".

The Russians in Brighton came over a generation before the Rego Park immigrants. Their children are having children already. They are from Russia, many from Moscow. They have actually taken what was a declining neighborhood and made it better. Nonetheless, the Brighton Beach boardwalk is great people-watching. Of course, there is mostly Russian spoken, and you can see everybody having lunch at the restaurants on the boardwalk. The boardwalk is in great shape and twice the width of the boardwalks in Rockaway or Long Beach. It reminded me of Europe. It was a great afternoon

Friday night, Judy and I went to Starbucks, always a place for characters. The baristas all know us, and one of them moved a woman from the handicapped table to another table, in our honor. We noticed that night a character sitting in a stool by the counter, talking at the top of his lungs to the barista about his personal, as if he were in a bar confiding in the bartender. But the best was a strange character with a borderline personality holding a vinyl LP, which Judy happened to catch the title of -- "The Best of Myron Cohen" [no relation to me that I know of. Look up Myron Cohen in Wikipedia. He was a comedian of the Borscht Belt Catskills. And he was always on Ed Sullivan. We sat through his routines while waiting for our British boy groups to appear. These guys were always appropriate for prime time TV, although when they performed in the Catskills hotels, they were always on late at night, so the guests could put the kids to bed. Then these comedians got raunchy. As a child, we used to take a 3-hour drive to Loch Sheldrake, where my Uncle Normie Pasternack and Aunt Ruth [my dad's sister] ran the coffee shop at Brown's Hotel in the Borscht Belt. Hey, I think I have a story to publish online or a chapter of my book.

Speaking of which, there have been too many opportunities for an attention-challenged procrastinator like me. I find myself getting hooked into Facebook and Twitter and losing track of time. Valerie gave me a whole box full of clothing custom-made for Lewis, with velcro closures.

I ran into problems when I found out that NYSARC didn't pay a few of my important bills. I had to get a special cord for my new fax [I found out my old fax was sending black pages, which I only found out after the bills weren't paid and I called NYSARC, who said "oh, yeah by the way....... nice]. So Louise has been faxing them at her office. Despite getting confirmatiions, NYSARC claimed they didn't get some of them. So more followup has to come from me.

The seatbelt on my wheelchair -- busted again.
Debbie came last Sunday. We bullshitted for a while and then went in 80 degree weather to have ice cream at Baskin Robbins.
Ride for Life starts next week. I am possibly going an extra day because they offered to pick me up with a wheelchair van. So I will probably do two days.
Fern's Fighters will be doing the Manhattan Walk to D'Feet on May 16. The Long Island Walk to D'Feet is on Sept 12 this year.
I'm sick of hearing about swine flu.....excuse me, I mean H1N1.......I don't want to be a "piggist"
There is now a Facebook group for AES alums, thanks to this former French/Spanish teacher.
They're building condos across the street from me -- purchase price $1 million and up! Huh???

Monday, April 20, 2009

What do you say to a dying man?

Since I was planning to write about this topic, I came across this article and thought I would put it out there so those of you who are interested, can read it, mull it over, and then read my response to it later, when I get around to it. I agree with the writer of the article on some points, but not on others. Then again, he is newly-diagnosed, and I am in my sixth year since diagnosis, so I have a whole different perspective. To read the article, click on the title.

Saturday, April 18, 2009

Nancy O'Dell, Outings in a Wheechair Van, I May See the Beach

Nancy O'Dell, co-host of TV's "Access Hollywood", lost her mom recently to ALS. Despite her mom's passing, I am hoping Nancy will continue to fight for an ALS cure. Read more about that, here. The dilemma with ALS is that often after the death of the patient, the family and friends seem to pull away from the ALS community. Except for the small percentage of "familial" ALS cases, I guess most people whose lives have been touched by ALS, feel that the disease will probably never touch their lives again. So they go back to raising money and awareness of cancer, AIDS, or some other disease that is much more likely to affect them or a family member or friend. They prefer to forget the whole ALS experience. And, since most ALS patients die within two years of diagnosis, there isn't a lot of long-term follow-through.

The best possible arrangement an ALS patient can possibly have is a wheelchair van. But not everybody can have this, because either they can't afford it, or they don't have a caregiver who can drive it, or both. In my case, I can't have a wheelchair van for both of those reasons. And that is why I have to depend on Access-a-Ride, which must be scheduled a day in advance, and can be terribly unreliable, or public buses, which can be inconvenient. In my case I also don't have a lot of companions who have the time to spend going places with me, while putting up with those modes of transportation.

Last Saturday, I had a special privilege. My friend Valerie, who unfortunately lost her husband to ALS last fall, picked me up in the wheelchair van she still had, last Saturday. Everyone knows two of my favorite places are Trader Joe, and the beach. Well, Valerie, her 6-year-old daughter Layla, and Louise and I, went in the wheelchair van to Trader Joe, but the rain ruined our beach plans. What a gift to be able to pull into the van without having to do a difficult transfer, ride where we wanted, and when we wanted, on no set schedule! Just a laid-back afternoon of Trader Joe and snacks at a Chinese bakery in Forest Hills.

The good news is that it is going to be 70 degrees today, and Valerie is going to pick me up again for a trip to the boardwalk. I have not seen a beach in three years, and I have been very depressed about this! By the way, disabled people can actually go onto the sand at Long Beach, Brighton, Coney Island, Rockaway, and Orchard Beach, due to mats they have installed. For all ththose skeptics who don't believe me, or who don't think a wheelchair-bound person can enjoy the beach, check out this article or this one, with great pictures
and also a listing of exact locations for the mats. I might add that Forest Hills is one of the many accessible stations of the Long Island Railroad [LIRR], which goes to Long Beach and Jones Beach [the latter with a bus connection from Freeport] For the webpage to look up a list of accessible LIRR stations, click here.

Since Valerie has to return te van this week, today will be my last shot at going in such style. I am really looking forward to it!

Wednesday, April 15, 2009

Any Twitter-ers Out There? Please help!

ALS/TDI [ALS Therapy Development Institute] has an opportunity for anyone on Twitter [go to twitter.com to join] to join in the campaign to get a $100,000 donation from Hugh Jackman!

Go to this link for instructions. You have to tweet often, and ask your followers to retweet! Thanks!

Saturday, April 4, 2009

Update April 4, 2009

Louise brought me to see "33 Variations", a play about a musicologist who has ALS. It was my first time in a Broadway theater since late 2003. It was exciting to me to be in a Broadway theater again, and even more exciting still to see the 71-year-old Fonda in her first Broadway play in over 40 years. There is no excuse for a wheelchair-bound person to stay away from Broadway. All the theaters are accessible, and there are wheelchair spots in every theater. You can book wheelchair spots online or by phone, and as a wheelchair user, you sit in the orchestra section, and your companion gets a seat as close to you as possible. And the best part is that you both [wheelchair-user and companion] get the lowest-priced ticket. I also joined a program through the Theater Development Fund [TDF], called TAP for people with disabilities [PWDs], which sends lower-priced offers every month. So there is no reason for PWDs to stay away from Broadway, or museums or other attractions for that matter. They are all accessible, except for the Lower East Side Tenement Museum because of the landmark status of its building.

One weekend when Judy could not come, Louise came over to take me to Starbucks. My friend Andrea came one Saturday, stayed the whole afternoon, and really brightened my day. My former student Jessica Aguilar came last Sunday to help me with some reorganizing that really made a difference. And my weekly visits with Judy are always something I look forward to. I still need to measure the width of the hallway leading into the bathroom so I can hang curtains from a tension rod. We had to take off the bathroom door so I can get up to the doorway for my once-weekly trip to the bathroom. And, I went with Judy to shop for a cotton rug for the bottom of Chelsea''s cage, but all we saw were rag rugs. Then Debbie sent me a rag rug, which we "installed" yesterday. Chelsea slept in her litter box all night. She will have nothing to do with the new rug. It probably has to do with the nubby nature of the rug. Her own cotton rug is in the laundry, and there were no rugs like it in Bed, Bath, and Beyond. So my aide and I switched out a rug that she loves to lay on, which was on the floor, and put the rag-rug on the floor. Problem solved!

I have my portable vent. on a chair when it is recharging; otherwise, it is on the back of my wheelchair, but it needs two people to put it there. The purpose is to enable me to go out for up to six hours when I am totally vent-dependent, but right now, I use it for when I am out and feel short-of breath or sleepy from not enough oxygen. And the ventilator has to be taken on and off the wheelchair to be recharged. Today I am mostly using the vent [non-invasive] at night. This is, of course, next to my cough-assist machine. So much equipment!

By "vent", I mean NIV [non-invasive vent], which goes onto my nose and/or mouth with a mask. I use a Bi-PAP at night, which is similar to the C-PAP that people use for sleep apnea. My "vent" is also a NIV. This is not to be confused with a tracheostomy and mechanical ventilation, which some patients opt for, when NIV no longer works. This is considered life-support and is a big decision. Stephen Hawking is on mechanical ventilation. In pictures of the famous physicist, you can see the tracheostomy tube coming from his throat. Most people who opt for this, have a ton of money to pay for care, which is not covered by Medicaid or most insurance plans. A patient on mechanical ventilation needs either trained nurses and/or trained family caregivers to be present all the time, because the patient can never be alone. In the absence of that, the patient must live in a nursing home. Since I refuse to live out my life in a nursing home, I have a health-care proxy that instructs that I am not to be trached and mechanically-vented. There are many people I keep in touch with, on mechanical ventilation, most of whom have a spouse who does most of the care, and nurses to fill in, even children who can do the job. Many of them run fund-raisers throughout the year to raise the money to pay the bills. With stem-cell research being much more on the horizon, a cure or improved treatment is more imminent, so they want to go on as long as they can. As for the patients I correspond with in nursing homes, they are not happy. They say the staff doesn't understand ALS, are especially mean to patients who can't speak, and are especially isolated because their friends and relatives are uncomfortable visiting nursing homes. From my understanding, good nursing homes with compassionate staff are few and far between. I even correspond with a patient in a nursing home where the staff never brushes his teeth. For Christmas, all he wanted was someone to brush his teeth, so a friend came over to do just that.

On the other side of the spectrum, I know of a man in Manhattan who is on mechanical ventilation and lives with his wife and a live-in aide [paid privately]. He has a push chair, because he can't use his hands anymore, and so he can't drive a motorized wheelchair. Every day he goes out -- to the park, to a movie about twice a week, out and about, etc. Every situation is different. In his case, he wrote a book totally using a computer that works with eyebrow movement, because his eyebrow is the only thing he can move. He uses the book sales [the book is called "Not in Kansas Anymore"] to raise funds for his care. He is the epitomy of strength and resilience. Most people with ALS will tell you that before their diagnosis they would have said "I'd rather be dead than live like_____." You can fill in the blank with any scenario/phase of ALS. For me, it could have been "I'd rather be dead than not be able to wash my hair three times a week/take a shower daily/not be able to go to the beach/not be able to drive, etc. etc. BUT when you get to each stage, you adjust, you accept, you are happy to be here.

Saturday, March 21, 2009

Some Thing That Make Me Sad; Some Things That Make Me Glad

I am very sad about a couple of things this week. First, I am really sad about the death of Natasha Richardson. It was so quick, so senseless, so arbitrary, so unprovoked. It is a reminder, once again, that life is so fragile and so precious. You can be fine one minute, and dead the next. They called it "talk and die" syndrome. One minute you're fine, talking, walking, refusing medical help, and suddenly, [could be a few hours or minutes later], you're vomiting, you have a severe headache, and may even collapse. Very scary, and very sad. The news reports that I heard, said that impact on either side of the head is more dangerous than impact to the front or back of the head. Hitting the side of the head can actually knock the brain around, and cause blood to collect in a hematoma. I thought back to how many times I have fallen, especially in the early stages of my ALS, knocked my head, and felt just fine afterwards. I think we can all look back and recollect an incident like this.

I am also sad that our sensitive and ultra-conscious president found it so easy to make an politically-incorrect comment on the Tonight Show yesterday. He was actually making fun of his bowling, and said it was like the Special Olympics. His staff called the Special Olympics to apologize even before the show aired. We are all so aware of racial and ethnic slurs, but slurs against people with disabilities still roll off our tongues so easily. I am also guilty of blurting out words like "retarded", "lame", and, ironically, "spastic". This is ironic because "spasticity" [stiffness] is my most troubling symptom.

And here's the thing that makes me really sad [and mad too]: after a huge mess last year, where my bills fell behind, through no fault of my own, I have been really on top of things, and my bills have been meticulously up-to-date. But apparently, my fax machine stopped working properly, and the pooled-income trust received faxes from me that came in all black. They knew it was from me, and neglected to contact me to tell me. If I didn't notice that my balances online showed that the bills hadn't been paid two weeks after I faxed hem, I never would have known. When I called to find out why my bills hadn't been paid, and asked why nobody called to tell me there was a problem with my faxes, I got the most ridiculous answer: "We didn't have your number". I found this unacceptable since they have a whole file on me. I had to give them all to a friend to fax from the office, but the phone calls are coming in already, and I'm embarrassed. And the thing is that nobody has the least bit of compassion when I tell them that the bills are paid through a trust. They probably think I am some rich trust-fund baby, when nothing can be further from the truth! So, late fees are coming my way. In order to let the NYSARC trust know how damaging this was, I will have to send a letter, because nobody was willing to call and make the noise over the phone. Needless to say, I had to shell out money for a new fax. Oh well. In the scheme of things, I guess this is a minor rant.

But here's something that I found really sad, and I hope my feedback helped her [she said it did]. I met a woman Tuesday night whose brother has ALS. She's in the city and he is on Long Island. She hasn't seen him in a year. She can get to him-- that's not the problem. He is extremely depressed and stays in bed in the upstairs of his house. His wife is installing a stair lift for him in the hope that he will go downstairs. The sister I met says that when she calls on the phone, they don't want to talk about ALS. So she says that she sees nothing they can talk about, so there is no reason to visit him. I told her that it is probably depressing him further that his own sister will not come to see him, and why do they have to talk about ALS? I reminded her that there is still an intelligent person inside. So she said "well I can't tell him about anybody else's life, because it will upset him by reminding him of what he can't do anymore. I can't talk to him about politics, because none of that is relevant to him anymore. Same with the arts." I suggested they watch TV or a movie. She was concerned that the media was not relevant to him anymore. I told her this saddened me because he is not his disease, he can still live, and be entertained, and laugh. She said I helped her, that she will go see her brother and try to get him out of bed, or at least watching TV, or read to him. I don't know why people think PALS are not people anymore, that the only subject that interests us is our disease. When I see people, aside from explaining a few things they need to know, I don't want to talk about my ALS. And when I don't hear about their lives, it distances me further. I have people I was very close to, that I either never hear from anymore, or if I do, tell me nothing about their lives anymore. Because of this, I don't feel attached to people I felt a closeness to, before ALS. Or maybe it's a way for them to break the attachment, either purposely or subconsciously. I don't know. What I do know is that many people who were a big part of my life, are not in my life anymore. I'm told serious illness can bring them closer or further apart. I'm happy to say that, in most cases I know, it brings people closer.

I am happy that my friend Andrea is coming today, and I can ask her to help me with some things that have been hanging -- a new rug for my bunny's cage, a package that has to be sent from the post office, pictures to be hung, etc. And Judy is coming for our weekly Starbucks outing. I am also happy about my physical therapy, which started yesterday as an outpatient. The PT is trying to strengthen my stomach, and loosen up my legs. So far, it's the closest thing to a gym workout I can have. I hope to burn some calories.

Saturday, March 14, 2009

Stem Cells, Iplex, Jane Fonda as PALS on stage

The biggest news is President Obama's overturning of the 2001 Bush restrictions on stem-cell research. This action will open about 1,000 stem-cell lines. It's important to know that cures and treatments for disease will not come overnight, but the opening of lines will increase the investigation and research. For more information

A clinical trial for patients with rapidly-progressing familial ALS, has begun enrollment at Emory University. The study uses the drug arimoclomol. go to this link,
Louise took me to see a new Broadway play called "33 Variations" starring Jane Fonda as a musicologist who has been diagnosed with ALS. ALSA had consulted with the cast, so the progression from clumsy walk to cane to walker to wheelchair, and finally to deathbed, was reasonably accurate. Parts of the play were weak, but Jane Fonda's performance was stellar. She hadn't been on the stage in 46 years and, at 71, is not likely to be there again. So it was a privilege to be able to see her

The FDA has decided to allow a few patients with ALS access to mecasermin rinfabate [Iplex] under "compassionate use" rules. Iplex is a blend of recombinant insulin-like growth factor-1 [IGF-1] and IGF binding protein-3, which was pulled from the market when Insmed [the drug's manufacturer] lost a patent dispute with companies that make a similar drug to treat stunted growth in children. Insmed only has a small quantity of the drug remaining.
For more information, go to this link


Saturday, March 7, 2009

African-Americans Needed to Help Save a Life of NYC child

African-Americans are desperately needed today for a bone-marrow screening to help save the life of a six-year-old in Greenwich Village today [Saturday] Go here for details

Friday, March 6, 2009

Community Choice Act (CCA) is the mos...

Community Choice Act (CCA) is the most important health care reform bill for people with disabilities and seniors. Simply put, it will give people with disabilities and seniors in nursing homes and other institutions, or folks who are at risk of such placement, the choice to live at home with the services and supports that they need to stay in their communities independently.

Become an initial Community Choice Act co-sponsor! Write to your Senators and Representatives in the House:

If you don't know who your senator or representative is, click here

Dear [recipient name inserted here],

I am contacting you today to ask that you take action on a critical issue:

The institutional bias of long term care.

I am sure you are aware that seniors and people with disabilities Overwhelmingly prefer to live in the community with supports rather than Receive assistance in a nursing facility or other institution.

Unfortunately, the current system does not give people a choice and often requires that people go into a nursing facility or other institution to get the assistance they need. In fact the vast majority of our Medicaid Funding for long term care is earmarked for expensive institutional settings, rather than supporting people at home in the community.

The Community Choice Act (S799 in the 110th Congress) changes this by establishing a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability.

This bill would allow the dollars to follow the person, and allow eligible Individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

This legislation is supported by every national organization representing

people with disabilities.

Your support of the Community Choice Act is extremely important. This

legislation is about individual choice and allows an individual to choose

to receive care in the community, rather than be forced into an institutional setting. Please give seniors and people with disabilities a Real choice in long term care.



Community Choice Act (CCA) is the mos...

All boomers should care deeply about this! Disabled and elderly people should have the choice to stay in their own homes, to "age in place"

Community Choice Act (CCA) is the most important health care reform bill for people with
disabilities and seniors. Simply put, it will give people with disabilities and seniors in
nursing homes and other institutions, or folks who are at risk of such placement, the choice to live at home with the services and supports that they need to stay in their communities independently.

Become an initial Community Choice Act co-sponsor! Write to your Senators and Representatives in the House:

If you do not know who your Senator or Representatives are, click here

Dear [recipient name inserted here],

I am contacting you today to ask that you take action on a critical issue: The institutional bias of long term care.

I am sure you are aware that seniors and people with disabilities Overwhelmingly prefer to live in the community with supports rather than Receive assistance in a nursing facility or other institution.

Unfortunately, the current system does not give people a choice and often requires that people go into a nursing facility or other institution to get the assistance they need. In fact the vast majority of our Medicaid Funding for long term care is earmarked for expensive institutional settings, rather than supporting people at home in the community.

The Community Choice Act (S799 in the 110th Congress) changes this by establishing a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability.

This bill would allow the dollars to follow the person, and allow eligible Individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

This legislation is supported by every national organization representing people with disabilities.

Your support of the Community Choice Act is extremely important.

This legislation is about individual choice and allows an individual to choose to receive care in the community, rather than be forced into an institutional setting. Please give seniors and people with disabilities a Real choice in long term care.