Disability - My Experience with ALS

Disability - My Experience with ALSI am quite often asked: How do you feel about having ALS. The answer is, not a lot. I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing, which are not that many.It was a great shock to me to discover that I had motor neurone disease. I had never been very well co-ordinated physically as a child. I was not good at ball games, and my handwriting was the despair of my teachers. Maybe for this reason, I didn't care much for sport or physical activities. But things seemed to change when I went to Oxford, at the age of 17. I took up coxing and rowing. I was not Boat Race standard, but I got by at the level of inter-College competition.In my third year at Oxford, however, I noticed that I seemed to be getting more clumsy, and I fell over once or twice for no apparent reason. But it was not until I was at Cambridge, in the following year, that my father noticed, and took me to the family doctor. He referred me to a specialist, and shortly after my 21st birthday, I went into hospital for tests. I was in for two weeks, during which I had a wide variety of tests. They took a muscle sample from my arm, stuck electrodes into me, and injected some radio opaque fluid into my spine, and watched it going up and down with x-rays, as they tilted the bed. After all that, they didn't tell me what I had, except that it was not multiple sclerosis, and that I was an a-typical case. I gathered however, that they expected it to continue to get worse, and that there was nothing they could do, except give me vitamins. I could see that they didn't expect them to have muc...