Shakin' Street — A Parkinson's Blog

I’ve written in the past about the difficulties people with Parkinson’s have finding reliable information, medical expertise, and support. Recently, a couple of AI-driven products have launched to help PWP’s and their caregivers bridge the support and get the information they need.

The newest offering is AskShan, a free online tool designed by TWT and its founder, Shan Havins. Havins was diagnosed with young onset Parkinson’s in 2023. After experiencing her own frustrations at the lack of timely access to information, medical advice, and treatment options in her home community of Idaho Falls, she decided to put her technical knowledge to work for the rest of us.

The result is TWT (short for “ThriveWellTogether) and AskShan. When you ask a question of AskShan, the style of each response response is warm and supportive — Havins told me the idea is that you’re talking to a good friend with a really good reference book on her desk.

Havins tells me that she wants to keep the basic version of AskShan free, but in order for the project to be sustainable it will untimately need to have a paid tier. She is working on ways to keep the whole thing as affordable as possible while still paying the bills.

An innovation in the works: down the road, the paid tier will offer “user permanence,” in which the product (with your permission) remembers you and your previous conversations with the tool so you don’t have to start from scratch each time.

The current, free version of AskShan is available at https://thrivewelltogether.com/askshan/.

A Survey on What’s Working

Sharon Krischer, who writes the excellent Twitchy Woman blog, was diagnosed 16 years ago. “At that time,” she wrote recently, “the prevailing view was that People with Parkinson’s would have about 5 good years before things started to decline. I am thankful every day that my symptoms have not progressed much over the years and I have long outlived the predicted outcome.”

She has met others who have also lived well for a long time, and it’s caused her to wonder what’s worked for those who have done well for a long time. So she’s the Parkinson’s Disease Experience Survey for PWP’s who have made it over the 10-year mark.

I want to look at this from the person with Parkinson’s point of view, not a researcher’s point of view. What do you think has contributed to your longevity with PD? Why do you think you have succeeded where others have not? What advice can you give others who have been newly diagnosed? To find answers to these questions, I created a survey for people who were diagnosed over 10 years ago with Parkinson’s. Over 110 people have responded to so far. Thank you to all who have taken the time to respond to me. The survey is still available if you want to take a look at it. All answers are confidential. I may get in touch with some of you to dive deeper into some of the issues that face us.

The survey for those 10-years-or-moreppost-diagnosis is available here.

A separate survey for those diagnosed less than 10 years ago can be found here.

The Upside of Being Elderly

I turned 65 in January. While there are some downsides to my advanced age (a glance in the mirror tells me I may not be quite as hot as before. Also, Parkinsons), I’ve experienced some unexpected benefits.

Last Tuesday morning I went to a spin class. My gym membership is free, paid for by my insurance company as part of my Medicare supplement plan. Later the same morning, I went to another gym for tai chi. Membership to that gym is also paid for by my Medicare supplement plan.

Tuesday afternoon, I paid half price for a bus ride — TriMet says I am now an “Honored Citizen” — and rode to Northwest Portland to see a movie. At the theater, I received a senior discount, saving a dollar on my ticket. After the movie, I rode home on another bus, also at half price.

If I’d known it was so cheap to get old, I’d have done it years ago.

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Bonus for Those Who Read to the Bottom

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I’ve never cared for Sammy Hagar’s music. I didn’t like Montrose, or the Van Halen stuff with his singing, or most of his solo work. But his cover of Elvis Costello’s “Pump It Up” is, IMHO, really good.

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In the most recent episode of his “A History of Rock In 500 Songs” podcast, Andrew Hickey makes a strong case that Pigmeat Markham’s “Here Come the Judge” was, in 1968, the first rap record. Born in 1904, Markham was 64 years old when he recorded this — and it’s not too far from what the Sugarhill Gang did 11 years later.

From the “I Had No Idea” desk: in 1977, the Beach Boys’ Bruce Johnston recorded a disco version of the Chantays’ “Pipeline.” Many of the YouTube commenters really like it. I do not.