I Am My Own Worst Advocate

The other day I stood at my window and watched a man walk down the street. He looked suspitious and he was walking funny. Suspitious because he was checking out every house as he passed by each one and was a bit unkept. Walking funny because he seemed a bit off balance, as if he may have stopped by the local tavern before taking his walk.

I voiced my thoughts verbally to husband who was in the room with me. The moment my judgmental words escaped through my lips, I knew I had made a mistake.

Ten minutes later the same man came walking back and checked out the neighbors front yards and carports, still seeming a bit off balance in his gait. And then he turned up one of the driveways a few houses down and I realized who it was.

Not a stranger, casing houses while the occupannts were away from home, but someone who I didn’t recognize as he’s gone 80% of the time, traveling for his work. And he has a funny walk that makes him look a little off balance, but because I don’t know him well and don’t see him often, I didn’t know it was him and erroneously passed judgement.

I am my own worst advocate.

How many times have I read about the symptoms of Parkinson’s disease and how they are misinterpreted by mis- or uninformed individuals who judge what they know very little of? How many times have I fallen victim to such ignorance?

And yet, there I stood at my window, heaping ignorance upon ignorance as I wondered if the man I was observing was snockered. Just as soon as I had voiced it, as I said earlier, I knew I had done the same thing all those people do when they ask, “What’s wrong with you? You never look happy anymore.” (In reference to the stone face syndrome.) Or, “Do I really make you that nervous?” (In reference to shaking/trembling while holding a conversation with a friend.)

They  (‘those’ people) don’t know any better.

I do.

If I am going to be  an effective advocate for Parkinson’s disease, I need to not be doing what would be expected from someone who is uneducated in PD – making assumptions as to why someone is behaving, acting, moving, or speaking a certain way. There are so many invisible diseases and the truth is, you never know who is fighting what.

10 Things A Parkinson’s Patient Wants

  1. To feel good.
  2. To smell (what’s baking in the oven).
  3. To have people believe that the person with PD isn’t pretending to have a chronic disease. Really. We have better things to do.
  4. For others to understand that although they can’t see all of the effects, the disease is real.
  5. More dopamine. We gotta have more cow bell dopamine.
  6. To not shake all the time. It would be so nice to stir our coffee because we want to.
  7. For others to be aware of the struggles and invisible symptoms people with Parkinson’s face so that they are better able to understand the fervency and urgency of a cure.
  8. To find a drug that doesn’t knock you out for half the day, but instead, knocks out PD.
  9. A plastic bat to hit others over the head when they make thoughtless comments.
  10. A cure. 

That’s all.

A Song and Video for Parkinson’s Disease by A Woman with Parkinson’s Disease

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Dora Leonard is a reading teacher in an elementary school in the suburb of Chicago, a wife and mother of 3 children.

Dora was diagnosed with Parkinson’s Disease in December 2013; two months after she turned 50.

Inspired to write a poem in December of 2014, she later asked her 22-year-old college son, Jeremy, to compose the melody for it. They asked a singer from their church to sing the mother-son creation for them and hence, the song I Will Choose was created.

The sales proceeds of this song (available on iTunes) is donated directly to the Michael J. Fox Foundation research for finding a cure. Dora is hoping that by sharing this informationw with others, it will aide in finding a cure for those who live with Parkinsons’s disease.

I Will Choose, by Jeremy Leonard, is sold on iTunes, Amazon and Google Play for 99 cents. You can preview the song by clicking on the link ‘I Will Choose’ above. You can view the YouTube video here.

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