Wednesday, December 2, 2009

Taking the first step - why?

Why? I don't need my 15 minutes of fame. I don't think that what I have to say here will be particularly earth-shattering or in need of being saved for posterity. But things have happened this week that have set me on a path that may make me a bit of a pioneer, and so what I experience in the next while may be of interest to people who have MS or have loved ones with MS.

Anyone from the MS community who is reading this will have heard about the Dr. Zamboni's "liberation treatment" by now. While some people in Europe and the US were aware of the work, the CTV show about it has put it in the limelight for the MS community in Canada and increased exposure in the Unites States. For the first time (since I was diagnosed, at least), there is news of a treatment that might actually "cure" MS, in the sense that the progression of the disease may be stopped completely. The MS blogs and facebook sites are in a state of great excitement and, as someone with MS, I can understand why.

I have, over time, come to grips with the slow-motion car crash that most MS patients face: the likelihood of loss of motor control, bodily functions gone awry, loss of dignity... and a good chance of dementia (though given the other problems, that could be a blessing). Diagnosed over five years ago and in slow decline most of that time (while on Betaseron), my rate of decline has increased over the last year or so. My mobility has gotten worse at a greater rate, and there have been periods when the fatigue would require me to nap up to four times in a day.

Now, to be offered the possibility of a reprieve... it's very exciting and scary. Scary because, if this treatment isn't as miraculous as I hope, it'll be hard to steel myself for the inevitable progression of the disease.

But that is background, and probably enough for today. Over the next while I'll chronicle some of the online research I have done on CCSVI and the "liberation treatment", and some of what I think about what I learned. More to the point, in a week or so I'll find out if there is the possibility of going overseas to be tested for CCSVI and then, if I have the condition, to be treated. If that does happen, I intend to describe my entire "journey": what happens, the results, and how I feel along the way and at the end of the process.

Regardless of how things turn out (assuming I get to go), I expect this blog to have a definite end... either I will have stopped the progression of MS and will be able to report that at some point in the future, or not...

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