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.

Fall Guy

A Day With Parkinson's Disease, Page 8

To see the complete day, sequenced look here

Jim Kerr and the Amazing Flying APDSG

Anchorage Juggler Jim Kerr visited our support group with tips on balance and stretching. One tip we all agreed to immediately: Avoid stilt walking. We put this into practice right away and not one of us had been on stilts since. Thanks, Jim!

Me and Wii (Part One)

I'm old enough to remember when television was supposed to be bad for us. I'm almost old enough to forget this as well, but let's not dwell on that sad state of affairs. Instead, I want to dwell on a different sad state of affairs. Now where was I?... oh yes, TV... Nowadays we don't have mere television, we have interactive video gaming, which is supposed to help us parkies with balance and fitness. It's TV that, darn it, is good for you! Ever eager to mix the unmixable, in this instance fun, and Parkinson's Disease, I obtained a Wii and a balance board. I then plugged in, turned on, and prepared to enjoy a rollicking workout.

The Wii had other plans. It began by asking me a series of questions about my height, age, and weight. Then it asked me to step up on the balance board while it did a little calculating. That done, it proceeded to tell me I am 22 pounds overweight and 65 years old in Wii Years! I'm 52.

You know you are living in modern times when your possessions can insult you.

A bit nonplussed, I let it slide and prepared to take a simple balance test. I don't mean to brag but I think that my balance is pretty good, considering my circumstances. I felt confident about my performance on the test. My machine begged to differ "I guess balance is not your forté" the machine informed me, dripping cyber sarcasm all over my misguided little sense of adequacy. I had to check the game box and make sure I didn't have a copy of "Wii Insult Comic" but it assured me that I had "Wii Fit".

Then the machine turned all fake-concerned and asked me if I wanted to lose weight, and if so, how much and how fast. This led to protracted negotiations and much refinement of my button-pushing skills. Great way to lose weight, button pushing. Finally we arrived at mutually agreeable goals. I was left to reflect that I never got along with coaches well, and in that sense, virtual reality was eerily similar to real reality. The main difference was that instead of being abused by a hairy man with a huge beer gut and a Precambrian sense of humor, I was being abused by a virtual icon of a piece of plastic electronic equipment with no beer gut and no sense of humor. It was then I remembered my forté, and, coordinating my deft right arm with my exquisitely nimble 65- year-old hand, I turned the little SOB off.