NWPF

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Lies That Parkinson's Disease Told Me

Monday December 19, 2016

Yes, I should have known better than to trust Parkinson’s Disease. PD is not our friend. It spends its time and energy devising ways to mess us up. There seems to be no part of the human experience beyond the reach of this tireless troublemaker. I know this.  So I should have been on my guard. But I believed when it whispered the following lies in my ear.

1.) The good part of your life is over. It’s time to get up and start the bad part. 

While it’s certainly more difficult, expensive, mentally and physically painful to live with Parkinson's, the good part of my life did not end with my diagnosis.  Balancing that formidable list of downsides is the benefit I have reaped as a volunteer in the PD community here in Anchorage. Also, more than a counterbalance is the love and support that have come from family and friends. Over time, it became apparent the everyday joys of life may become rarer, but don’t vanish because of PD. Of course there are good days and bad days, but guess what. It was that way before you got sick, too.  (And, yes, Parkinson’s stole that “Good part of your life over, bad part begins” line from the movie “Broadcast News”. So PD is a liar and a thief.)

2.) Stay away from support groups. They are full of scary, sad people and will depress you.

I bought this lie without hesitation. And OK, there is something scary about seeing people confined to wheelchairs, using walkers and shaking like aspen leaves.  At first. But just as “to  understand is to forgive” to get to know the person behind the tremor is to lose fear of them and their disorder.. And there are people in our support group who handle the disease with courage and grace. These patients light the way to dealing with PD with dignity. You can deal with it too. Just follow their lead. Another benefit is to witness those who don’t handle the disease so well. As the saying has it,  “Every man is your teacher” You may learn from the graceless how best not too approach the disease as much as from the graceful who do it well.

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3.) Your balance will go bad. There is nothing you can do about it.

I certainly have lost a good bit of my ability to balance. And freezing as I carry in the groceries has led to frightening (and painful) falls. Furthermore, I expect I will fall more frequently in the future. But it has been shown that there is something you can do to mitigate the loss of balance: exercise. Most specifically, it has been found that those who do yoga and Tai Chi may improve their baseline balance ability significantly.  This tends to confirm a suspicion of mine that some of the fallout of Parkinson’s comes from disuse, rather than disease. An essential part of coping with this motion disorder is to keep moving. 

But what was worse than the lies Parkinson’s told me? The lies I whispered to myself.  The lie that life with a disease was not worth living. The lie that I am somehow less of a person because I am ill. To live is to be in transit somewhere along the spectrum that goes from good health to bad health. All of us will sooner later or later find ourselves at the far end of that journey. In our ultimate frailty,  we are all equal. The most important things in life, we still all share in common.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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2017 2016
Lies That Parkinson's Disease Told Me
Managing the Holiday Blues 2016
Who Was That Masked Man?
The Rain Is Shining — A Thanksgiving Message
Book Review - H.O.P.E.: Four Keys to a Better Quality of Life for Parkinson's
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