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Tuesday 2 February 2016

"Luck be a lady tonight"

My parkinson's seems to be advancing slowly compared to others. I am 5 years post diagnosis and really don't feel any different than I did 5 years ago. Of course I know the cocktail of medication controls my symptoms and those damn brain cells are continuing to decline, but all things considered I feel pretty good. Now if it would hold off for another 5 to 10 years, I would be a happy fellow.

They say there are 5 stages of parkinson's the first being when you first notice a tremor or a rigidity of movement on one side of the body. In stage 2 the symptoms are bilateral and there is some difficulty with balance. Stage 3 is still, relative to 4 and 5, somewhat benign. The severity of the symptoms begin to challenge the person's ability to walk a straight line, etc. The final 2 stages....well...we need not talk about them. The great Ali is in stage 5, a shadow of himself confined to a wheelchair.....but....it took about 30 years to get to that point.

30 years is a long time. I will have been dead for at least a decade in 30 years!

So how long does it take? How long is the usual descent into the final stage? I did some research and found lots of information, but it was something I found in a pamphlet from Parkinson's Canada that won me over:

The symptoms of Parkinson’s fluctuate throughout the course of the disease and intensify progressively over time. A number of assessment tools are used by clinicians to measure the impact of the disease on the individual, and while it is difficult to establish a “typical” rate for the progression of symptoms, it is safe to say that individuals often experience significant disability 10 to 15 years following diagnosis. Typically the progression is from one-sided symptoms that have little impact on the quality of life to the appearance of symptoms on both sides of the body, to decreasing mobility, and eventual reliance on others for care when the activities of daily living are no longer possible to maintain independently.

I have concluded nobody that knows what troubles I'll have and when they will start to get me down. You know, the point when I might start having real problems. I am not looking forward to that particular moment where I am dependent on others. But no worries, because until that day, I have decided I have progressed slowly so far and will do so in the future, if I keep on doing what I have been doing. Looking at my situation so far, I have decided, quite forcefully, that my decline is slow for one or all of 3 reasons.

  1. Pure dumb luck,
  2. all the exercise I insist on putting my body through; or,
  3. The research project in which I am a guinea pig - ie - taking caffeine pills daily, may actually be working!

Sadly I doubt the project is working so why? Why am I plodding along?

I think I am just plain lucky and exercise probably helps. So, I am back where I started. Nobody can predict what my progress will be. This mystery; this great unknown is just that, the mysterious "where, what, why and when"; and, for me, the answers are clouded by the fact that luck can have its storms and I hate exercising.

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