Parkinson’s, Oscars, and Willful Ignorance

And now for something completely different.

You may not know that my husband Gary has Young Onset Parkinson’s Disease. He was diagnosed at the age of 30, just like Michael J. Fox, but without the millions of dollars.*

MJF was on the Oscar’s the other night. I didn’t watch it live, but saw several Facebook posts where people mentioned how great he looks. One person said that she wouldn’t have any idea he has Parkinson’s, if she didn’t already know. Lots of people commented on how happy they were that he was doing so well. Everyone seemed to think he looked great and couldn’t believe how well he functioned.

482cba07ffd69300dec4dd253e94b374I went and watched the clip, of course: Oscar clip.

He does look good. He’s 25+ years out from diagnosis, and I’m so pleased that he’s able to do things like be on the Oscar’s.

At the same time, I watch him and see all the signs and symptoms of PD. Notice how he starts on the other side of the Delorean and does not actually get out of the car–he starts standing behind and out of view, because getting up and out of the car would be so difficult. Notice how his left leg doesn’t bend, how it drags when he walks. Notice his frozen left shoulder and lack of arm swing. Notice how he keeps his hands in his pockets, so he won’t display any tremor or dyskinesia. (Dyskinesia refers to the involuntary muscle movements caused by high levels of PD medications. It can sometimes look like swaying or swinging or a type of contortions.) Notice the lack of affect in his voice and his difficulty articulating.

I mean none of this to criticize MJF. Rather, I point out how much easier it is to say, “Oh, he looks great” and ignore the reality of PD. We’d like to pretend we don’t see the symptoms, that everything is fine, that modern medicine is miraculous. (It is miraculous–thank the gods for modern medicine. And yet.) We’d like to pretend that PD is nothing more than a bit of a hand tremor. We’d like to ignore the lived reality of it, because it’s easier not to know.

I know the cost he pays for this kind of appearance. I imagine how carefully they arranged his medications to make sure he was optimally dosed with levodopa/carbidopa for this precise moment on stage. Not too much. Not too little. How much antidepressant? How much anti-anxiety meds? How much pain killer or other stimulants?

Those of us who live with Parkinson’s know its symptoms encompass all areas of life and can’t be shrugged away so easily with a glossy coating of Oscar gold.

I hope MJF is doing well. I hope we continue to find new therapies and medicines. I hope.

I hope.

 

*That’s a joke I make often, but it’s also a statement full of rue. Millions of dollars help. With millions of dollars, you can get the best therapies, the best medicines, the best home health aid. With millions of dollars, I would be able to stay home and make sure Gary takes all his meds on time. Make sure he gets to his doctor’s appointments. Make more doctors appointments, for things like regular physical therapy. Join the Y and get him to the PD Rock Steady boxing class or other therapies on a regular basis. But. We don’t have millions of dollars, so we do the best we can.

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