Think / Able - and Check out My Parkinson's Facebook Page

Think / Able - and Check out My Parkinson's Facebook Page
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Tuesday, June 19, 2018

A Day in the Life: Parkinson's at its Best and Worst

Tonight, athletic hero (and Parkinson's wonder warrior) Jimmy Choi successfully beat 2 obstacles on American Ninja Warrior. He almost beat the third. It really was that close.

Whatever he does or doesn't do, he'll get my cheers. Nevertheless, for the advocacy he performs and the fundraising he makes possible, that man is one of the best weapons we have going. From 240lbs and a cane to rock hard pythons that could compete with Hulk Hogan, Choi is an example of what is possible with heart. This doesn't mean that being an American Ninja Warrior is the only way to win, but it does mean that WHILE WE CAN, we need to be living as forward and people first as possible. 

Being energetic, however, defeats rigidity. For this, whatever your hobby and if you can do it safely, do it!

Remember, being energized and unafraid to live our lives in public makes people root for our cause, be it as a marathon runner or a grandparent.

Former Pennsylvania Governor Ed Rendell learned that today as he came out after being diagnosed with Parkinson's 3 years ago. And while I have to say, "Politics aside, people," since some people will remember him for that, I commend him for who he is today. His voice will do wonders for bringing support and recognition to our cause. 

People who choose to see him only as a Democrat will fail to see him as a persevering person, fighting the condition we share (or people we love share).

I wanted to take some quotes from a pair of articles and share them with you.

"I always viewed myself as indestructible, never missed a day of work through my working career," Rendell said.

The more human we get with our words, the more empathy we create. This isn't something he did to himself. This is a sneak attack (though he did have PD family history). By stating things as is without looking for a fight, we win hearts and minds.

BELOW, Good advice from doctors...

Heather Cianci, a physical therapist at Good Shepard Penn Partners said, "Because we know there is a cognitive slowness with Parkinson's, so there's a way to bring that to the forefront, stay ahead of it so we can slow it down."

"Our goal is really - when we make that diagnosis is to communicate to patients that our goal is really to keep you functioning if not normally, then close to it for many, many years," Dr. Matthew Stern said.

"Unbelievable, in fact my hands are steadier now than when I first started getting symptoms," Rendell said.

As a person who traffics in optimism, this last quote above, used out of context, bothers me. It almost seems to say we can stop this. Right now, we can't. We'd like to stop this, but that goal is ahead of the technology, though dedicated women and men are putting PD on defense as they go after it, Mike Tyson style. 

Here, I hope Rendell keeps boxing, fighting, and advocating and finding people to create that technology, but I don't want people to think that all Parkies have to do is eat better, take their meds, and keep active, and I or anyone else will be OK.

I believe it's coming, but will it happen before I see the big guns, granddaddy finishing moves coming at the end of the match? I'd be happy just to be stopped where I am.

Thus, before I leave you with the thoughts Tom Wolf (now PA Governor) has for Mr. Rendell, let me just say...

1) Just like Choi and Rendell (and Jackson and I), put your face up and choose to be the change you want to see in the world. I realize being out in the job world is scary, but if you can, be loud, proud, and work to the solution you need.

2) It doesn't matter who you are or how you do it, provided it's done with love and respect, but get out there and express in so many detailed words the fullness of our experience as Parkies. This helps doctors, family, friends, scientists, and the public feel for our cause and want to make a change. You don't need to be a writer, but you need to be confident, detailed, fair-minded, and engaged. I know we can all do that!

“Frances and I are sending our thoughts and encouragement to our friend Ed Rendell today. Pennsylvania has seen few leaders as tough as Ed and we have full confidence that neither has Parkinson’s disease. Ed should know that the entire commonwealth is standing behind him and hoping for the continued success of his treatment and therapy. As he always has, he is putting others first by going public with his diagnosis so others can also get the help they need. We are proud of everything Gov. Rendell did and does every day for Pennsylvania and Philadelphia. We look forward to continuing to work with him to build stronger and safer communities for a long time to come.”

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