Shakin' Street — A Parkinson's Blog

As a general rule, I don’t run unless someone’s chasing me. There is little chance I will ever emulate Rhonda Foulds.

I read about Foulds last week in Sara Wittingham’s new book Oh Crap! It’s Parkinson’s: A Rebel’s Guide to Taking Back Control of Your Life.

Foulds

• Was diagnosed with Young Onset Parkinson’s at 34
• “Went home and waited to die.” After five years, she was using a wheelchair.
• Got Deep Brain Stimulation in 2004.
• Started walking. Walked a 5k race. Ran a 5k race.
• Began running marathons.
• Over the next two decades, ran 125 marathons, including Boston 11 times.
• In 2024, she was diagnosed with lung and ovarian cancer.
• Had half of her left lung removed. Called the 20 weeks of chemotherapy “Marathon 126.”
  

That’s where things stood when Wittingham’s book went to press. I looked Foulds up online to see what had happened since then, and found this video:

It’s worth 4 minutes and 11 seconds to watch the story, but I’ll give you the headline: She wanted to run the Boston Marathon one more time, and couldn’t train properly if she was on chemotherapy.

So she quit chemotherapy, did her training, and on April 20 — with one lung, Parkinson’s Disease, and two forms of cancer — finished her 12th Boston Marathon.

This is the sign she wore on race day:

Her finishing time was 6 hours, 39 minutes, and 53 seconds.

Things I have in common with Rhonda Foulds:

1. I had part of my right lung removed in 2006.

2. I’ve got Parkinson’s Disease.

Things I don’t have in common with Rhonda Foulds: everything else.

The next marathon I run will be my first. If it ever happens. Which it won’t. When my knee hurts I sit down until it stops hurting.

Foulds has had both knees replaced on her way to over 100 marathons.

Reading about Foulds caused me to go back and re-read the New York Times feature on Sue Goldie.

Goldie, whom I wrote about last October, is a Harvard professor, MacArthur Genius Grant recipient, triathlete, and person with Parkinson’s. John Branch’s article described her insistance on competing in Ironman events as she struggled with symptoms, professional concerns, and injuries.

The piece ignited some controversy in the Parkinson’s community — some found the story uplifting, while others worried that she was making her situation worse by trying to do too much.

Influential blogger Sharon Krischer had this to say on Twitchy Woman:

Her need to exercise at such a high level has caused many injuries, many of which she ignores. and I wonder if they may be causing her PD to progress at a faster rate. We know that some Parkinson’s meds can create obsessive behaviors like hers. Have her doctors even talked to her about changing her meds and cutting back on the extreme exercise? I hope she gets the care she needs before she endangers her health even more.

At the time, I agreed with Krischer. Based on the Times’ portrayal, Goldie struck me as a bit too driven. Exercise is good, but too much can be a bad thing — and she sure seemed to be overdoing it.

I’ve changed my mind.

Before I judge anyone, I will try to remember that there are always parts of the story I don’t know.

Hearing directly from Goldie on an interview by Harvard’s Stephanie Simon made a difference — rather than the seemingly tortured and driven martyr in Branch’s article, Goldie sounds confident and in control of her own life.

She’s talked to the doctors, considered the options, and has decided that the benefits she gets as part of the Ironman community outweigh the risks and injuries the competition might cause.

And learning of Rhonda Foulds, who faced her own immense challenges and made a similar decision, tells me that some people are more driven, more focused, and just plain tougher than the rest of us.

We’re all fighting this thing with all the tools we have. Each of us must weigh the options, and the consequences.

It’s our life, and our decision.

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Is There a Parkinson’s Cluster on John’s Landing?

In April of 1995, I started a job at what became Clear Channel Radio. Our building was in a Southwest Portland neighborhood called John’s Landing. I stayed at that job for 15 years.

This was before “remote work” became a thing — we were in the office every single day.

I was diagnosed with Parkinson’s in 2023. In 2024 I heard from a late-90’s coworker that she also had the disease. Recently I learned of two more colleagues from that era who’ve also been diagnosed with Parkinson’s.

In the late ’90’s/early 2000’s we had roughly 110 working there full-time. Since the prevalence of Parkinson’s in the United States is estimated at 0.3%, you’d expect one case of Parkinson’s in that group. Maybe two.

Instead there are four cases I know about — and dozens of co-workers I’ve lost touch with over the years.

Are there more?

Maybe this is just a fluke, and there are no more to be found. Or maybe something in the John’s Landing area made people sick — and perhaps it still is.

I spoke recently with a Professor of Neurotoxicity at OHSU, who told me that if we can identify ten people who’ve been diagnosed with any neurological disease — it doesn’t have to be Parkinson’s — there are medical journals who’d write about it.

If you or someone you know worked at 4949 or 5005 SW Macadam, and have been diagnosed with any neurological disease — it doesn’t have to be Parkinson’s — please email me at therealshakinstreet@gmail.com.

All information will be kept confidential.

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Private Message

A friend and fellow PWP broke her ankle on a hike last week. Surgery and a period of enforced idleness are in her immediate future.

A quick message:

Listen, You Know Who You Are: you’re going to get past this setback the same way you’ve dealt with the other challenges of this dumb disease — by following your doctor’s orders, exercising when it’s safe to do so, and letting people help you when necessary.

We’re looking forward to seeing you on your bike and at the ping pong table by the end of the summer, and putting this thing in the rear-view mirror.

Go get ’em.

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Bonus for Those Who Read to the Bottom

Want to support this blog?

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The magnificent voice of the late Raul Malo. Good times, indeed.

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From Italy, Lovesick Duo with a nice Chuck Berry cover. Stick around for some impressive “guitar face” during the instrumental break.

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Chris Stapleton unloads on “Nothing Compares 2 U.”

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I wonder if Jon Bon Jovi has seen Selo i Ludy’s version of “It’s My Life,” and if so whether he realizes this is the way the song was meant to be played.