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. 

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!!

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!!

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!!

New ALS drug slips through telling Phase II clinical trials

New ALS drug slips through telling Phase II clinical trials
Very exciting!! Epilepsy drug found effective in blocking glutamate and slowing progression of ALS.

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]..

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.
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