“There has to be something I can do.”
That phrase has been digging a hole in my head for over two years now. I think it’s the voice of human nature telling me not to accept things as they are, a voice we all tend to hear when tragedy looms and events feel beyond our control. Despite being told my illness was fatal, I was convinced there must be a way to stop it, or at least slow it down.
Once the shock had passed, I started researching the field of ALS, and soon realized my options fell into three areas: 1 FDA-approved drug, a handful of clinical trials, and a rag-tag list of alternative therapies. There didn’t seem to be any consensus among doctors, scientists, or patients as to which of them, if any, might truly work.
I’ve been to a horseracing track exactly twice in my life, and both times I felt completely clueless as to which horses to put my money on. I had never heard of any of them, and had virtually no information to go on. With ALS, it seemed as though I’d have to place a bet on one, perhaps several of the horses available, and pin my hopes on them winning the race. Given the stakes, I figured I’d be lucky for one of them to place. Or show.
My initial neurologist tried to reassure me by saying there is a prescription drug to slow the progression of ALS. She made it sound like a sure-fire bet. But she failed to mention that the drug, Rilutek, was approved by the FDA more than 10 years ago, and has yet to prove itself even remotely effective. Here we are, nearly 70 years after Lou Gehrig put ALS on the map, and we only have one lousy treatment.
From what I’ve read, statistics show that based on the average life expectancy of 2 to 5 years, Rilutek gives you another 3 months, if that. Each pill adds perhaps 2 hours to your life. Of course I immediately considered downing the whole bottle, but apparently you should only take two a day since it can be tough on your liver.
Three months is better than none of course. But I find it ridiculous to call it a treatment, especially when it costs more than $11,000 a year. I suspect most doctors regard it as a rather limited tool in their bag of tricks, and little more than a formality to prescribe. It’s the only medicine they can officially suggest you try. Still, as long as its covered by insurance, I’ll take it. It’s something I can do. And it helps a little to keep my hopes, if not necessarily my legs, alive and kicking.