Shakin' Street — A Parkinson's Blog

Tom Lehrer wasn’t talking about Hadley Ferguson when he said this, but he could have been. Ferguson, an artist based in Missoula Montana, is the subject of the documentary film The Passion to Persist, which played during the first day of the World Parkinson’s Congress last week in Phoenix.

Ferguson is an artist who has created an astonishing series of paintings and murals while dealing with Multiple System Atrophy, an aggressive neurological disease which has robbed Ferguson of her ability to eat, walk, and even get out of bed.

The movie is playing festivals and fundraisers, and is not streaming. If it comes to your town, get off the couch and go.

Seeing The Passion to Persist was a great way for us to kick off WPC 26 — it reminded us that whatever Parkinson’s puts in our path, it’s possible to pivot, adapt, and continue to make a difference.

WPC brought 4000 members of the Parkinson’s community together for four days — people with Parkinson’s, care partners, doctors, scientists, researchers, and social media influencers — for lectures, round tables, films, and networking opportunities.

There were so many things going on that it was impossible for anyone to experience all of it. Like the “Blind Men and The Elephant” parable, what each participant saw and heard depends on what events they decided to attend.

Dr. Ray Dorsey, co-author of the NY Times bestseller The Parkinson’s Plan

Nenad Bach, founder of PingPongParkinson

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Here are the things that stuck with me, in no particular order.

1. Phoenix is just too hot outside. The mayor should do something about this.

2. I’m still not sure what is supposed to happen when someone wears a sunflower lanyard at the airport. The lanyard is supposed to signal airport workers, TSA officers, airline employees and cab drivers that the wearer has a hidden disability and may need extra help. I put mine on and wore it through security, to the gate, on the plane, and in the cab to our hotel. Besides one Portland WPC attendee (hi, Peggy!), nobody said anything about it. As near as I can tell, nobody treated me any differently. That’s not necessarily a problem, since I didn’t need any special help. But I’d be interested to know what, if anything, transportation workers are instructed to do when they see a lanyard.

3. On Sunday morning, a panelist from Australia passed along the following advice: “Don’t make Parkinson’s the focus of your life.” This is an interesting message to receive on Day One of a 4-day Parkinson’s convention.

4. Because I’m about to launch a Parkinson’s General Interest Support Group, WPC’s Support Group Leader Lounge program caught my attention. This was a home run — over three days I sat in on sessions on how to build a successful support group, accessibility issues, and how to deal with difficult and awkward situations. This was a home run for me.

5. Some of the sessions on science went over my head. At one point, Neuroscientist Richard Smeyne’s presentation on the neurobiology of exercise completely lost me. I was reduced to just writing down words from his slides. Here’s a screenshot of my notes (typed on my iPad) from the talk:

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6. After Smeyne, I was relieved to hear Jimmy Choi using words I could understand. Choi, a polished public speaker, gave me a couple of concepts to chew on:

• Break each workout into two parts. The first part of Choi’s workouts covers “what the research shows” — getting his heart rate up to 80-85% of the max for an extended period. The second part focuses on a particular area that needs work. He asks “What stat am I trying to improve?” The answer might involve balance, or footwork, or rigidity. But there is always a specific purpose.
• Add challenges to your everyday life, asking “What can I do today that’s more than yesterday?” After three days of using escalators to go between floors of the Phoenix Convention Center, I started taking the stairs. Sometimes.

7. On Monday, a panelist used the “F-word” during her introductory remarks, and it didn’t seem to bother anyone. I’m not offended by the word — I’ve used it plenty of times. But I’ve always avoided using it around strangers.

If I may have a quick Boomer moment:

I’m old enough to remember the shock generated by Country Joe McDonald’s “Fish Cheer” on the Woodstock album, and by George Carlin’s “Seven Words You Can Never Say on Television” comedy routine. When the Watergate Tapes transcripts were published, President Nixon’s potty mouth was partly concealed by “[Expletive Deleted.]”

The current President of the United States uses the expletive on social media. Michael J. Fox used it — to iconic effect — on “Shrinking.” I’ve seen “Fuck Parkinson’s” T-shirts at support groups, and at my gym.

And now I’ve gone and used the word on my blog. The apocalypse is coming, is what I’m saying.

8. As we were leaving the Convention Center Wednesday afternoon, we passed a sign promoting the Parkinson’s Foundation’s PDGENEration Study. I’d completed PDGENEration several months prior, but the sign said there were opportunities for previous participants. So we stopped by the booth, learned about a follow-up study called Explore, and spent an hour getting a blood draw, answering questions, doing cognitive tests (I think I did well?) and an extended smell test (I failed miserably.) It was a nice way to end our participation in WPC26, and I hope I contributed just a little bit to the effort to figure out Parkinson’s.

9. It was moving to see all the care partners enthusiastically taking part in the classes, activities and discussions. Heartfelt thanks to the lovely and talented PDXKnitterati. This Parkinson’s thing isn’t fun for anybody, and it means more than I can express that you’re along for the ride.

Considering we still don’t know what causes Parkinson’s, how to slow it down, or how to make it go away, I was impressed by the level of hope and cooperation on display among the Parkinson’s community in Phoenix. For four days we gathered, traded tips, tricks, and data, and moved the process a little closer to a cure. I’m looking forward to hearing some good news in Quebec City in 2029.

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Request for a Small Favor

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Bonus for Those Who Read to the Bottom

Want to support this blog?

Fred. Rita. Rock and Roll.

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Stayin’ Alive, acoustic.

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In honor of the Andrew Hickey’s current “Patreon Bonus” podcast episode on The Guess Who.

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Suggested by Loyal Reader Tim, here’s a “maybe better than the original” version of Springsteen’s “Drive All Night” by Eddie Vedder and Glen Hansard of The Frames.