Shakin' Street — A Parkinson's Blog

On a recent Saturday, I returned from a trip to St. Louis to visit my mother.

The following Monday I came down with a cold. Nothing major there — negative on multiple Covid and flu tests. For four days I coughed, sniffled, and whined to my wife.

And I stayed home.

By Thursday, I was 50% recovered. Friday, I felt good enough to attend — wearing a mask — a friend’s birthday party.

Let the record show I defeated the common cold. But four days at home got me thinking.

My lifestyle in retirement is based on being out of the house. Most weekdays I have two activities scheduled, in two different places:

• Monday and Wednesday I have ping pong and boxing.
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• Tuesday and Thursday are for indoor cycling and tai chi.
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• Friday is mostly a rest day, with just a qi gong class. Saturday has boxing, Sunday has a ping pong lesson.

Every single day I walk out of the house, get in the car, and go do something.

The energy, ability and resources to do those things? I’ve taken them for granted. Four days in the house was a bucket of cold water.

I’ve been watching my Mom’s world shrink for about five years. She’s 91, dealing with dementia, recently-diagnosed Parkinson’s, and the aftereffects of a stroke.

She used to play tennis and run for exercise. Now she uses a walker and a wheelchair.

In the past five years she stopped driving and moved from her own condo to an Assisted Living community. She was briefly allowed to take walks outside her building, but she got lost in her own neighborhood.

She was a career travel agent who weht to Antartica in her 80’s. Now she can’t leave her own building without an escort.

By comparison, my sniffles were extremely minor, and temporary.

But sitting at home for four days gave me plenty of time to consider the possibility that at some point, my world will shrink in much the same way.

I’m not ready for it.

My current lifestyle depends on my ability to drive — ping pong and Rock Steady Boxing are 30 minutes away by car.

I haven’t thought much about what I’ll do when I can no longer drive…when my energy level drops…when Parkinson’s progresses to the point when my world will be whatever I can do within four walls.

Right now my focus is on putting off that day for as long as possible. But the odds are it’s coming.

For those in my audience who have faced a version of this, I’d be grateful for your insight in the Comments. What adjustments have you made? What kind of support was available? How have you been able to control your attitude?

If you’d prefer to communicate privately, you can email me here:

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Elections Have Consequences

Buried in the pile of executive orders signed during the first two weeks of the Trump Administration: a regulation-freeze that may wipe out a big 2024 Parkinson’s community victory.

A few weeks ago I wrote about the Environmental Protection Agency’s ban of Trichloroethylene (TCE), a solvent that causes several forms of cancer and is associated with a 500% increase in the risk of Parkinson’s disease.

According to Parkinson’s Avengers, that ban is now on hold.

The TCE rule was originally expected to escape the reach of a regulatory freeze, as it was due to take effect on 16 January, four days before Trump’s inauguration.

However, industry litigants secured a court-ordered temporary stay of the rule before it took effect (see box), putting the regulatory freeze mechanism in play.

The freeze will delay the TCE rule’s effective date until 21 March, giving the EPA officials “the opportunity for further review and consideration of new regulations”, according to a 28 January Federal Register notice.

Concurrently, in the litigation over the rule, the US Court of Appeals for the Third Circuit agreed to an EPA request to pause legal proceedings for 60 days, to “brief new administration officials with decision-making responsibility about this case and the issues presented”.

In addition, Representative Diana Harshbarger (R – Tennessee) has filed a Congressional Review Act resolution, that, if passed by both houses of Congress and signed by the President, will fully invalidate the rule.

Happy breathing, everyone!

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Bonus for Those Who Read to the Bottom

AC/DC’s “Dirty Deeds Done Dirt Cheap,” performed as a sea shanty.

“Bohemian Rhapsody,” as a surf instrumental.

Depeche Mode’s “I Just Can’t Get Enough” performed on kitchen implements.