My Very Own “Missed Connection” Ad
We were on a plane Wednesday evening, December 17. You were planning to change planes in Portland, Oregon and continue to Miami on a redeye. I was in 10C, you were in 10B.
You figured out I have Parkinson’s, and I mentioned this blog. You asked for the URL, and we decided you’d henceforth be known as “Reader 401.”
Your wife has Parkinson’s and Lewy Body Dementia. We talked about her struggles, and some of your challenges as her care partner. You were considering joining a support group, and I suggested seeing if peer-to-peer mentors were available in your market.
Because I’m an idiot, I neglected to ask for your contact information, but I’m pretty sure you said you live in Palm Beach.
Reader 401, if you happen to read this post, please be advised that the Parkinson’s Association offers peer-to-peer mentors in Southwest Florida, and several of them work with care partners.
Google tells me Palm Beach is South Florida rather than Southwest, but if there’s distance involved you might be able to work with them on Zoom.
You can find more information here: https://mentors.parkinsonsassociation.org/search-for-a-mentor-in-sw-florida/
The Benefits of Mentorship Go Both Ways
From diagnosis on, Parkinson’s is a grind of constant adjustments. Symptoms shift, meds stop working, work and social life can shrink, and activities that used to be fun turn into effort.
Clinicians can treat symptoms, but they don’t live with Parkinson’s 24/7. Support groups help by putting people with Parkinson’s and care partners in the same (real or virtual) room to swap stories, tactics, grief and humor.
Peer mentoring pushes that connection further: one‑on‑one, focused, and personal.
According to Brain & Life Magazine:
“Peer mentoring isn’t a substitute for support groups—it’s an additional layer of support,” says Jori E. Fleisher, MD, MSCE, FAAN, a neurologist and researcher at Rush University who studies ways to better support family caregivers of people living with Parkinson’s disease and Lewy Body Dementia. “Everyone dealing with a chronic illness needs help in different ways. A one-on-one connection lets people ask those difficult, personal questions they might hesitate to ask in a group setting. That individual relationship can make it easier to talk about sensitive issues and can help patients and caregivers gain confidence and self-advocacy skills.”
My Mentorship Experience (So Far)
About a year ago, I signed on as a volunteer peer mentor with Parkinson’s Resources of Oregon (PRO). They paired me with another person with Parkinson’s whose experience overlaps mine in some ways and diverges in others.
We connect every week or two—sometimes in person, sometimes by phone or Zoom. He talks through current symptoms, wins, setbacks, and goals, and we decide what’s noise and what needs action.
At the end of each conversation, we schedule the next one. I send a short list of action items: concrete steps for him to take before we talk again.
I’m his accountability partner; knowing he’ll report back on a specific day nudges him to move.
I’m also a sounding board, the person he can reality‑check ideas with before raising them in clinic or at home.
Between calls, I sometimes act as a research assistant. He flags treatments or strategies he’s heard about; I dig into the evidence and practicalities and send him my thoughts by email. I don’t give medical advice, but I can help him sort through the pros and cons, and give him good questions to ask.
The benefits go both ways.
I’m learning a ton about symptoms I haven’t (yet) experienced and medications I haven’t (yet) tried.
I’ve had the opportunity to research Focused Ultrasound, DBS, intermittent hypoxia therapy, and buddhist meditation.
This week I picked up a book on aging he recommended.
Mentoring keeps me engaged, curious, informed, and less afraid of whatever Parkinson’s plans to drop on my head.
Interested in finding a mentor — or doing some mentoring yourself? Google “[your town] Parkinson’s mentor.” If nothing comes up, search for “[your town] Parkinson’s support groups” — and ask if your local organization has a peer program in the works.
Preventive Measure of the Week
There’s been a lot of recent attention on environmental causes of Parkinson’s –in particular pesticides and herbicides.
I was pleased to read about the Rootwave eWeeder, an agricultural product that electrocutes weeds instead of poisoning them. According to Time Magazine:
U.K.-based RootWave developed a new nontoxic approach to weeds: The company’s tractor-mounted eWeeder zaps them with electricity. Designed for use in vineyards, orchards, and bush-fruit farms, the machine uses high-frequency, low-energy AC waveforms to fry weeds to their roots, killing up to 99% in row crops on a single pass, but leaving the soil and surrounding plants unharmed. The company says it’s cheaper on a per-hectare basis than herbicides, which are becoming less effective as plants adapt. And “there’s no health or environmental consequences to it,” CEO Andrew Diprose says.
A promotional video from the company is below. Please be advised that I am not endorsing this product (RootWave: call me!) and will not make a dime if you buy one of these contraptions. But I really like the idea and hope it spreads.
Thank you to loyal reader Dave for bringing this to my attention.
Bonus for Those Who Read to the Bottom
Warning: if you don’t like cats you’re not going to like this. Also, it takes almost a full minute for the cat to start playing, so you might want to fast-forward to the 60-second mark. After that it’s pretty cool.
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Just a very nice Bobby Darin cover
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I understood none of this, but I’m impressed.
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Finally, “Sultans of Swing” on a recorder.
This guy did not bother to comb his hair or put on a clean shirt for the video. He takes his glasses off in the middle of the solo, and scratches his ear to another point. And he absolutely tears the roof off.
Note: I can view this embedded TikTok video on my iPad, and on my iPhone. I cannot on my Windows desktop, and do not know why. If you are looking at this on an Android device, let me know if it works.
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