JOB AVAILABLE: SPOKESPERSON FOR ATAXIA
Ataxia is a neurological condition, sometimes genetic, sometimes sporadic, sometimes hitting kids, sometimes lurking like a predator, waiting to pounce on adults. Ataxia leaves a destructive trail of impaired mobility, slurred speech, weak eyesight, a delightful array of symptoms. The condition is rare and somewhat random and even doctors do not fully understand it. They have helpfully identified 50-60 different genes that could be responsible. Some varieties are extremely Mendel-like in their manifestation. One of the most virulent strains is Freidreich’s Ataxia (FA), which affects the largest number and affects even small children. All ataxias are progressive and currently irreversible. By the way, Ataxia is the condition that has forced me into a wheelchair.
From time to time, the internet blazes with some new fad or the other. Going gluten free has helped some. Vitamin E is generally of benefit in all neurological conditions. One standing recommendation for this condition as well as any neuromuscular condition is frequent exercise, on the assumption that one must “use it or lose it”. Stem cell treatment, which is strongly opposed by Canada and USA, is supposed to be another magic bullet. Each year, hundreds of hopefuls travel to Mexico, China and other countries offering this treatment.
We have been languishing without a celebrity victim or spokesman. Damn it, if I had Alzheimer’s I could point to Ronald Reagan. ALS has its Hawking, Parkinson’s its Fox, Spinal Cord Injury its Reeve. There was a rumour that Abe Lincoln may have had ataxia, but we are looking for a live celebrity, not a dead one. Let me assure you, this is a very clean disease – no terrible linkages like smoking and lung cancer, unsafe sex and HIV. Bad behaviour does not bring it on like over eating and obesity. Maybe we will get lucky and a current celebrity will be stricken down. As terrible as that would be for the person concerned, it would be a great thing for us as we would have our celebrity victim. Or even a non ataxian could take up our cause. You do not have to be one of us to feel for us. After all, Sarah McLachlan sung her way into our hearts even though she is no dog herself – critics may, however, disagree.
If nothing works, I am seriously thinking of picking up an axe and becoming a serial killer. Canada has no capital punishment and the Government will have to house me in some prison cell somewhere. Saves me the trouble of finding a suitable old age home. No more cooking, no more laundry! Yay! Just hope the judge does not accept any plea of temporary insanity. Serial killing will enshrine me forever. Each person gets 15 minutes of fame and a lifetime of the other stuff. Imagine – me, the first serial killer in a wheelchair!
But, wait, there may be an answer. Any drunken celebrity can effectively demonstrate what a typical ataxian looks like. We just need a person who stumbles a lot, cannot walk a straight line, talks in a slurred voice. So often we are mistaken for a drunk person. I think it is time to use that to our advantage.