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!!