Parkinson's Celebrity Advocacy and Responsibility

I previously wrote an article about more presence for Parkinson's in popular media.

My feeling was that presenting our condition organically, not commercially to sell products, and not just a subject of arthouse films and documentaries, is essential to condition advocacy, awareness, inclusion, and empathy.

Unfortunately, representation isn't that easy. There are a lot of "non-affected" people out there who feel like it's an athlete/entertainer/celebrity's job to be quiet about the social issues and stick to entertainment and sports.

The politics of advocacy

However, being that I'm into advocacy for Parkinson's disease (PD), I see that "condemnation" as more about not being on the same political side as the "offended" critic.

Simply put, I don't see anyone with our condition asking "famous" people not to lend a hand. Rather, this sentiment comes from a lot of angry talking heads, who are paid to generate anger to anyone who dares to question their version of the truth (on all sides of politics).

By keeping a person with an audience out of the fight, this keeps reality from raising its voice to express the need for change.

Inspiration for everyone

The list of famous (and everyday) people with Parkinson's is unfortunately too long. That said, I know there's a voice or kindred soul out there for you! I may not be a basketball guy, but Brian Grant is solid offense against PD's weak defensive game.

I love baseball, so I'm going to find out about Ben Petrick's years of hiding PD while catching 165 games and hitting over .250 for his career

Maybe you grew up with Linda Ronstadt and Neil Diamond's voices, or met Jesse Jackson at the MLK memorial opening weekend.

The point is we have an inspiration for you because each person with Parkinson's chooses to be a Parkinson's warrior! Think how much darker our lives would be without them, or don't bother since they're here.

Depictions on television

If you were to do a search for Hank Azaria's former (foul-mouthed) IFC TV show, Brockmire (now on Hulu), it's more likely, you'd find reference to his role as Apu on The Simpsons.

In fact, the first article about Brockmire also focuses on the voice role he no longer chooses to play. However, that wasn't why I was googling at the end of my binge watching. Instead, I was looking for the Parkinson's plotline the show culminated with. Frankly, there just isn't much mention of it on the internet.

On Brockmire, the audience feels the pain from the final emotional conflict. Really, they have all along since the main character's redemption arc goes from man lost in the debris of his former wife's infidelity to battling alcoholism.

As he goes along and battles his demons, his life quality seems to be improving. Then, just like that, there is a final problem that could destroy him all over again.

I won't ruin it for you if you want to see the end of the show. I'll just say it hit hard emotionally to confront the issue of time. It might not be a traditional advocacy effort, but it gets the job done... well.

Our biggest advocate

I look at our biggest advocate and realize that his "purposeful fame" is much bigger than a "celebrity" acting in a movie trilogy or starring in a few TV series. You probably know that from his presence and books.

In fact, now, he has a new book out: No Time Like the Future: An Optimist Considers Mortality, and yes, it's well done.

We knew that though. Even if he's talking about getting out of the lemonade business, we'll still read it. I did, and while "enjoy" is not a good word for it, I appreciated it.

I'm glad he's out there speaking. He's definitely done a lot of things during the 3 decades between diagnosis and his 60th birthday. Now, our rock star is moving the crown to our next hero, it seems. Yes, there's a whole section on American Ninja Warrior Jimmy Choi!

A new generation of heroes

Jimmy Choi is a unique case because he used his time, talent, compassion, condition, and enormous effort to transcend a diagnosis to represent all of us. He is one of many, but by running, jumping, hanging, and doing burpees, he has inspired a whole new group to advocacy.

From Allie Toepperwein's trailblazing run on American Ninja Warrior before him, as well as her current activities, to Dan Schoenthal giving the Appalachian Trail a run for the money, there is a lot of positive game out there.

These people are the ones using their "celebrity" for advocacy and their bad break for other people's opportunity. I might like to think about a world without PD, but not one without heroes.

Be like Mike

Fox impresses me with who he is. When a certain antagonistic radio personality vocally attacked his credibility, he kept his cool. When that same person died, much of Parkie Nation let the rancor fly, but not Michael J. Fox. That's Jackie Robinson style restraint, my friends.

For this, I think it's only right to end this essay on advocacy with a quote from his new book:

"When I visit the past now, it is for wisdom and experience, not for regret or shame. I don’t attempt to erase it, only to accept it.

Whatever my physical circumstances are today, I will deal with them and remain present. If I fall, I will rise up. As for the future, I haven’t been there yet. I only know that I have one. Until I don’t. The last thing we run out of is the future. Really, it comes down to gratitude.

I am grateful for all of it - every bad break, every wrong turn, and the unexpected losses -because they’re real. It puts into sharp relief the joy, the accomplishments, the overwhelming love of my family. I can be both a realist and an optimist. Lemonade, anyone?"¹
- Michael J. Fox