Tuesday, April 24, 2018

Lies that Parkinson's Disease Told Me

In addition to the blogging I do here, I do  a monthly post for the Northwest Parkinson's Disease Foundation. From time to time I re-post work from there here. This is a favorite from December 2016. It's called Lies That Parkinson's Disease Told me.

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, and 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 Parkinson's Disease. 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 less obvious benefit is the chance 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 to approach the disease as much as you learn from the graceful who do it well.

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 chronic, disabling 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.

Friday, April 20, 2018

What Has Having Parkinson's Disease Taught You? Meeting Friday April 21

Hello friends, We have a meeting coming up this Saturday at 3:30 on the fifth floor of the Pioneer Home in glamorous downtown Anchorage.  To get a different angle on PD, my hope is to have a discussion centered around the question "What is something that I learned from having Parkinson's Disease? " So come prepared with ideas or make something up on the spot, but be ready be eager, be enthused to talk about your take on Parkinson's Disease. Thanks,