Interview for WPC Poster Presentation

How would you describe the Parkinson.FIT website?

Good.

Perhaps you could elaborate?

It’s a good one. You know how there are good websites and bad websites, and a lot of websites which you’re not sure of whether they’re good or bad, because you can’t remember how you got there or what you clicked on…and they kind of seem like they might be bad, but maybe you clicked on the wrong thing, so maybe it’s your fault and it’s all a big misunderstanding, but your wife is still going to be mad because you broke the computer again. Well, our website is not like that, it’s a good website.

It seems like you don’t take this too seriously?

It’s difficult not to take Parkinson’s seriously. But, there are a lot of great organizations and foundations that are doing wonderful things for Parkinson’s research. We’re a little less ambitious, or perhaps our ambition is a bit askew.

We want to help people with Parkinson’s find ways to live a better life today and tomorrow…and maybe next week…we’re still debating that part about next week, so don’t quote me on it.

We jokingly refer to this as our “Parkinson’s H.E.L.L. therapy”. And I’m not really sure why I said jokingly, because this is the serious bit. HE stands for High-intensity Exercise, and the double hockey sticks stand for Learning and Laughter.

Laughter and a positive attitude are so important to living well with Parkinson’s Disease. So, when it comes to the website, yes, there is a certain degree of snarky sarcasm that appears from time to time. Unfortunately, we’re not always funny, occasionally mildly offensive, and not nearly as bright as we pretend to be. Otherwise we’d be a lot funnier.

Learning is exercise for the brain. Most people don’t know this, but psychological studies show that dopamine (the neurotransmitter that never seems to transmit on time with PD) is essential to the learning process. It may be a different part of the brain, but learning something new every day is great exercise for the brain.

We didn’t originally plan on this, but news has become very important to us, as a learning tool. We constantly scan the news looking for topics that interesting, informative, inspirational and/or entertaining. The website is constantly updated and we try to draw attention to the articles that we find the most interesting…TV news reports, newspapers, magazines, websites, Parkinson’s organizations, blogs…encouraging people to go the original articles to learn more.

 

And That Led to a Newsletter?

Yes. We also didn’t plan on a weekly newsletter, summarizing the weekly highlights in Parkinson’s related news. But, this has proven surprisingly popular.

When we started the newsletter initially, the first few weeks I didn’t tell my wife what I was working on, because I thought she might think I’d lost my mind. When I finally told her, the only thing she asked was “Isn’t that depressing?” And I suppose it can be sometimes…but more times than not, it’s informative or inspirational. In particular, I love stories about people with Parkinson’s who lead active lives. One of my favorites was the “gun therapy” guy who has become a professional competitive shooter since being diagnosed and is competing in this year’s world rifle championship. A lot of people with Parkinson’s live with it for many years, and I find inspiration in that.

What about exercise? I thought that was your focus?

At the end of the day, yes.

How many people go to the doctor every year, and the doctor tells them that they should exercise? I don’t know the exact answer to that question, but I don’t think that anyone is going to argue with me if I say “A lot.”

We’re gradually adding additional exercise content to the website, but we think we can inspire more people to be active and embrace exercise by showing them that life continues with Parkinson’s.

And sometimes people who regularly exercise need additional inspiration. Some of the people in my local Rock Steady Boxing class particularly enjoy seeing video news reports of other PD exercise programs.

What about the Parkinson FIT Foundation?

We’re still in the early days.

Currently we have established Parkinson FIT of the Lowcountry in South Carolina, where we are focused on raising funds to enhance local Parkinson’s fitness programs and availability. We also do some events to raise money for national Parkinson’s organizations, and to promote awareness in our community.

If this proves to be successful, we’d like to expand, and develop a network of affiliated local foundations that can perform similar activity in other regions.