Understanding PD
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Living Well With PD
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Clinical Trials
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"Truth of the Matter"

As I struggle to stir the much too thick cookie batter (a result of the missing eggs that I noticed were used to make this morning’s breakfast) a thought occurred to me. Since my diagnosis over fifteen years ago, I have always attributed my high level of functioning and thus quality of life, to the fact that my version of Parkinson’s Disease has been fairly slow in its progression. But as I try and encourage the remaining ingredients to combine into something delicious for my family, I begin to wonder if my level of functioning is not as high as I believe but instead I have become accustomed to a new, lower level of functioning. That I am more accepting of the fact that I am not able to move with the same speed and ease that I was able to at one time. That
struggling with everyday activities has become my new norm. That the expectations I have of my body, have been lowered.

This change in perspective must have been insidious, the spiral downwards gradual enough to not garner much of my attention. Truthfully my productivity is still fairly high and I am able to accomplish most of what I set out to do albeit in a modified manner both in terms of technique and time. But looking back at my days when I was not inhibited by this disease, and the speed and precision with which I accomplished tasks, I have to admit that I had a much higher potential to accomplish significantly more with my day than now. And the fact that the neurodegeneration responsible for my uncooperative muscles for the time being is bound to progress, the thought of not being able to return to my pre-diagnosis functioning, is difficult to accept. And the years that loom ahead of me, more daunting.

What I fear most is not so much losing my independence (that I still believe I will maintain) but instead, that I will someday be faced with a task or challenge that I am unable to tackle and conquer. Not for lack of desire but instead due to my inability.
That someday I may have to admit defeat. For someone who has always persisted until a goal set was reached, this is an intolerable thought. But then again, have I already succumb to such a situation without being aware of my own vanquishment?

Is this a realistic assessment of my situation? Likely. Is it a healthy one? Probably not. The truth of the matter is that as we age, some degree of deterioration is inevitable. As life would have it, in my case that process has started a bit earlier than for most. Will that translate into earlier future disability? Perhaps. But as the fear brought about by this line of thinking starts to set in, I am reminded of something I read Michael J. Fox once said, which is basically that there is no point in worrying about something bad happening because if it does happen, you’ve worried about it twice and if it doesn’t, you’ve worried for nothing. I am also reminded of the commitment I made to myself to do whatever it takes to thrive despite this diagnosis and that as I fight this battle there are real advances being made to find better treatments and ultimately a cure.

So as I pull the morsels of warm oatmeal and gooey chocolate out of the oven, my optimism returns, my thoughts clearer. The truth is that regardless of the objective measures the impact my disease has on my functioning, my
quality of life is what’s truly important. And as I rejoin the family, treats in hand, I only feel a deep sense of gratitude for my life and the worries melt away as I see the appreciative smiles that await….
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