Treating ALS: Alternatives that are Workingby Derek Swinnard, 16 year ALS Survivor
My name is Derek Swinnard and I’m frustrated. I know quite a bit about frustration because I was diagnosed with ALS on December 8, 1997. But my current frustration is probably not what you are thinking. When I was first diagnosed it was difficult but not as difficult as for others, because in spite of the diagnosis I knew I was improving. I asked my wife that we not tell anybody because I wanted to improve so much so that I could eventually tell my daughters and other family and friends that I had beaten ALS.
I actually wanted to improve so much that when that improvement seemed to move at a snail’s pace I would get irritable, and I would act like a total jerk. After one of these meltdowns I told my daughters what was going on. That was about 18 months after diagnosis.
On the three-year anniversary of my diagnosis, I went public and let my friends and colleagues know about my health situation. So my frustration then was that I wasn’t improving rapidly enough. If you know someone with ALS, they would likely be glad to have improvements of any kind and to even have the luxurious problem of feeling frustration about improvements happening slower than desired. Today I walked 18 holes on a very challenging golf course and my very minor frustration is that after being one under after two holes, I took a 48 on the front but did bounce back with a 40 on the back. Golf now frustrates me like everybody else.
Currently, my big frustration is regarding wanting to have other people with the ALS diagnosis to benefit from my experience of triumph and from the experiences of others like me. Over the last eight or nine months, I’ve been involved with a group that has found others like myself who are improving and they want to make a film about what we are doing so that others diagnosed with ALS can benefit. So far, they have been unable to get the financial backing to make this happen.
It’s great that the Ice Bucket Challenge has raised so much money and awareness but I don’t see a cure happening any time soon. At best, ALS may become a chronic disease rather than a terminal one. In the meantime, I would like to see people diagnosed with ALS at least try some of the things that we have done. Of course there are no guarantees but I know I wouldn’t be here now if I hadn’t at least tried, because the alternative (bit of a reverse pun here) was to go home and get ready to die.
If this interests you please check out www.HealingALS.org where you can find out more about us (and hopefully donate as well).
Am I cured? I prefer to let a sleeping giant lie, so I don’t know if I’ll ever say out loud what I’m thinking. I do know that I might break 80 next time out on the golf course.–Derek Swinnard, 16 year ALS Survivor