Shakin' Street — A Parkinson's Blog

Last week, I wrote about a friend who has been a cancer patient and a Parkinson’s patient at the same medical center. It turns out there’s a vast difference in the level of “customer service” you get depending on the nature of your illness.

Many Parkinson’s patients have told me of being sent home from the diagnosis with little more than a brochure, a prescription, and a follow-up appointment in six months. They feel overwhelmed at everything they need to learn, without anyone in charge of vetting information or quarterbacking their care plan.

While there’s a pressing need to extend the Nurse Navigator concept to a much broader group of patients, that’s unlikely to happen anytime soon.

But in the meantime, a couple of initiatives are underway that may greatly improve the situation for people with Parkinson’s and their caregivers.

The Turnto Mobile App

This free IOS/Android app went “live” for the Parkinson’s world on August 20. As I write this, I’ve been using it for all of one day. While I’m only sorta familiar with the app, it appears to have the potential to be a central hub for information about the disease.

When you sign up for Turnto, you will create a profile identifying you by category (person with Parkinson’s, caregiver, other) along with your age and year of diagnosis.

Each day, the app will give you a “Daily Drop” of news about research, user stories, treatments, product reviews, and other developments. You have the ability to customize the feed to focus on symptoms, medications, research, and other categories that are important to you.

This morning, my Daily Drop included articles on a clinical trial exploring dance and energy use in adults with Parkinson’s; a user review of levodopa (unfortunately, written by somebody for whom English may not be his first language); a video from Jessica Krauser, the host of the Secret Life of Parkinson’s podcast; a video from Sharon Krischer, the writer of the excellent Twitchy Woman blog, and a link to Caitlin Nagy’s blog post about impulse control challenges related to Parkinson’s medication. Most of the information shared in the Drop was new to me and useful.

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“Don’t make the mistake of thinking you’re Facebook’s customer, you’re not – you’re the product. Its customers are the advertisers.” – Security writer Bruce Schneier, quoted in Time Magazine

What Schneier said about Facebook applies to Turnto: if the app is free to you and me, we are the product. The company Privacy Policy makes it pretty clear they will be selling our data.

This doesn’t bother me. Facebook already knows everything about me, and if Facebook doesn’t know it, Amazon does. I figure my privacy was bought and paid for years ago.

My Parkinson’s diagnosis is public knowledge – I have a blog about it – and I am willing to trade the information in my profile for a good central source of information about the disease. Turnto has the potential to be that source, and someone has to pay for it.

You may not feel the same way, so I highly recommend that you read the Privacy Policy before signing up.

You can sign up for Turnto by downloading the app in the iOS App Store or Google Play Store.

The TWT Project

Shan Havins of Idaho Falls, Idaho was diagnosed with young onset Parkinson’s in 2023. Like many of us, she was frustrated at the lack of timely access to information, medical advice, and treatment options.

Unlike most of us, she has professional-grade technical know-how, research skills, communication ability, and a refusal to take no for an answer. She quickly fought her way in to talk to “multiple movement disorder specialists, a speech therapist, a physical therapist, a neuropsychologist, a motor learning specialist, and a grief coach.”

Once she had put her own treatment plan in place, she decided to share what she’s learned with the rest of the world. The in-development TWT project will be the result.

TWT (stands for “Thrive Well Together”) describes itself as “a healthcare navigation service designed by individuals with Parkinson’s and the people who love them, for individuals with Parkinson’s and the people who love them.

We work with you to determine custom action plans that meet your specific needs, based on information derived from the latest scientific research, experts in the medical community, and the lived experience of people with Parkinson’s.”

The plan is to have three levels of service:

The Basic Level will offer AI-driven answers to questions about Parkinson’s. Unlike ChatGPT, Shan told me the information patients get from TWT’s service will be from carefully vetted sources, without the misinformation some commercial AI services dish out.

The Select Level will have patients create a profile and input their unique symptoms, medication, and other information. AI will then generate customized alerts and updates about research, new therapies and medications, and other developments in the Parkinson’s universe.

The Pro Level will have all of the benefits of Select, adding phone support and a referral service, so patients will have a real human being they can call for advice and help — a Navigator service similar to what my friend Marilyn had when she was diagnosed with cancer.

Shan told me that they are still working on the business model. Like everything else, somebody has to pay for this. TWT wants to make the basic tier free, and price the Select and Pro levels at a point that is affordable for most people while still bringing in enough revenue to sustain the business.

At the moment, TWT is compiling a waiting list, and hoping to launch in some form by the end of 2024. I’m on the waiting list. Once the service becomes available, I’ll review the Terms of Service and report back.

If you want to get on the TWT waiting list, you can do so at this link.

Asking A Small Favor

My WordPress stats tell me the audience for this blog is growing, but I would like it to grow faster. If you find Shakin’ Street helpful, there are a couple of things you can do to get it in front of more eyeballs:

1. Send this link to one or two people in your network who would benefit from reading the blog, and suggest they subscribe: https://shakinstreet.com/
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2. Go to my post on LinkedIn and leave a “like” or a comment there. The LinkedIn algorithm rewards engagement, so more comments means the post will be delivered to more eyeballs.
   
   Here’s the LinkedIn link to the post.

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Bonus for Those Who Read to the Bottom

Before Grace Slick joined Jefferson Airplane, and before “Somebody to Love” was a huge hit, Slick was in a band called Great Society, and they did the original version of the song. I don’t often say it, but I kinda like this tune slowed down.

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I always assumed Terry Jacks’ 1974 hit “Seasons in the Sun” was the original version of the song. Wrong!

Turns out the original Jaques Brel lyrics were in French, and translated/recorded by Rod McKuen in 1963. Here’s how it sounded then. You can decide for yourself if it’s better or worse.