Shakin' Street — A Parkinson's Blog

On LinkedIn, Parkinson’s patient advocate Esther Labib-Kiyarash tells the story of her recent hospital visit for a procedure. As she was checking in, she met a nurse who, it turned out, had been diagnosed with Young Onset Parkinson’s in June. The following is reprinted by permission from her LinkedIn post.

I asked him how it was going, he said good, his neurologist gave him a prescription and told him “when the medication stops working we’ll send you for brain surgery “. He smiled and went about his work.

I read a lot of articles and listen to many experts. They talk about interdisciplinary care, and medications that most people either never hear about or can’t afford anyway. This man was unlikely to have been given a single resource, instructed to exercise or assessed for depression. He won’t get physical therapy, unless he asks for it. He’ll have a follow up in 6 months, maybe a year. He will never see an MDS, probably doesn’t know they exist. This is what Parkinson’s care is for at least 50% of us. Perhaps stop saying we need interdisciplinary care when you can’t give most of us basic care.

My initial diagnosis with the first neurologist I met was similar — he didn’t tell me much, and I felt very much on my own. Fortunately, I’ve got a terrific care partner (the lovely and talented PDXKnitterati), some internet research skills, and the willingness to call strangers on the phone.

15-months post-diagnosis, I’m far from an expert. But I’ve learned a few things. Here are some things I know now that I didn’t know then.

1. “Nobody knows anything.” — William Goldman. Mr. Goldman was referring to the film industry. But the line applies to Parkinson’s as well. We don’t know what causes it, we don’t know how to prevent it, and we haven’t come up with a medication that stops it. A lot of people are trying a lot of things, and we have to choose from a set of treatment options with no guarantees. Get used to ambiguity.
   
2. “If I’d known I was going to live this long I’d have taken better care of myself.” — Eubie Blake. I grew up on Carnation Instant Breakfast, White Castle burgers, and cans of Tab. Eventually I moved to the West Coast and switched to pizza and Diet Coke. 40 years later I’ve got Parkinson’s. As I look at Dr. Laurie Mischley’s list of foods that are correlated with onset and progression, a lot of her list looks very familiar. If my 64-year-old self could tell my 25-year-old self anything, it would be “Clean up your diet!”
   
3. The best way out is through.” Robert Frost. As I’ve read first-hand stories from PWP’s and their caregivers, I’ve read about people who engaged in denial or hoped that Parkinson’s would go away if they ignored it. It looks to me as if the people who are doing best are addressing the challenge head on — they’re following the advice of their Movement Disorder Specialist or naturopath, exercising regularly, attending webinars, and exchanging information with others in the Parkinson’s community.
   
4. “Life Is short — buy the tickets.” — Author Unknown. At the moment, my symptoms are mild and stable. I can still walk into a club and stand for three hours watching a band. So I’m spending this year (and, with luck, the next few) traveling to music festivals and catching as much live music as will fit into my eyeballs and eardrums. At some point Señor Parky will catch up to me, so I’m squeezing as much as possible in now.
   
5. “Get out of the house.” Sharon Krischer, Twitchy Woman. I’m not a naturally-social person, and am probably more comfortable communicating with people online than in person. I have spent a lot of time researching on the internet and conversing with PWP’s on Reddit’s r/Parkinson’s community, the Turnto mobile app, and elsewhere.
   
   But the single best thing I’ve done for my Parkinson’s has been to sign up for in-person exercise classes. Three days a week I drive across town and spend an hour with 15 other people who also have to address the thing I’m dealing with. We trade tips on research studies, compare notes on medications, go out for beers after class, and occasionally pull practical jokes on the instructor. I’ve learned as much — if not more — from these interactions than I have from online research, and it’s a whole lot more fun.
   
6. “It ain’t over til it’s over.” — Yogi Berra. As I write this, there’s no cure for Parkinson’s. For most of us, the disease will progress, and tough times may be ahead. But the cavalry’s coming — hundreds of clinical studies are in progress, thousands of patients are experimenting on their own, and Congress recently passed the National Plan to End Parkinson’s Act. With billions of dollars going to research each year, I’m confident we’ll make Parkinson’s a managable chronic disease, and eventually find a cure.
   
   We just need to keep exercising until the cavalry arrives.
   

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Bonus For Those Who Read To The Bottom

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You may remember Melanie Safka from her 1972 hit “Brand New Key.” In 1993, she released a cover of the Hendrix classic “Purple Haze,” and does it justice.

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Blondie tackles T. Tex in 1979, live at Asbury Park Convention Hall. The band at the top of its game, Debbie Harry at the top of her Debbie Harry-ness.