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PD and Me: My Story of Living Well with Parkinson’s

pd-and-me-my-story-of-living-well-with-parkinsons

PD and Me: My Story of Living Well with Parkinson’s

Written by John Reinhart

Among the often overlooked effects of Parkinson’s is the conflict it creates between our self-image and how others see us.

I became acutely aware of this a month after my son’s wedding. His bride posted a lengthy video of the wedding on Facebook.

I was horrified by what I saw.

In one scene, shot over my shoulder, I appear stooped—almost a hunchback. In another shot, my leg is beating a rapid tattoo to some internal rhythm. That same rhythm manifests itself in yet another scene, although this time it is the tremor in my right hand.

It’s all you see. All I saw.

It’s a beautiful video, celebrating family and friends, and the love between my son and new daughter. And it shames me that I found it painful to watch. It left me depressed. Demoralized.

Was this me? Was this what people saw?

I’ve always been a touch vain. A runner for 40 years, I’ve stayed lean and youthful, and I take pride in my appearance.

In the video, I saw what Parkinson’s had taken away.

Later that same day, I appeared in a new post on Facebook. My daughter had gone online to schedule a boxing class and stumbled on a photo of me.

The picture had been taken a few weeks ago, to be used, potentially, in a promotion for Title Boxing.

The photo is in black and white. I am captured in the act of throwing a right cross. All my concentration is on that bag, on throwing that punch.

This was me. This was the warrior I thought I’d become

The juxtaposition between the video and the photo had me pondering the effects of Parkinson’s, especially its pernicious attack on one’s self-image.

The person in the video was me. I can’t deny the slumping back or persistent tremor. I have to claim, reluctantly, these symptoms of my disease just as much as I have to accept that I am short and bald.

But I can also claim the man in the photo.

“Fierce,” one friend called me.

Gritty, determined, focused were how others described me.

I am those things. Not always. Not every day. I have bad days when I struggle with Parkinson’s and its implications for my life.

But I have more good days than bad. I find inspiration where I can. The final lines of Tennyson’s Ulysses. My wife’s love and support. The support of my children, my friends. There is the unexpected gift of the men and women at Rock Steady. We fight side by side against a common foe.

I am also lifted up by a realization prompted by the difference I saw between a video and a photograph.

Each day we are confronted by a battle between Parkinson’s and our sense of self. Parkinson’s attacks our self-esteem, our sense of self-worth just as much as it attacks the neurotransmitters that produce dopamine.

But here’s what I know: We get to decide who we are, how others see us. Not Parkinson’s.

That man in the photo — that’s me.

 

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