May 19, 2019 – Parkinson’s Weekly Update

Weekly Update – Highlights include: On-line Parkinson’s Exercise programs; another clinical trial treatment can’t beat the placebo; feral pigs vs. placebo; dancing with your dog; Parkinson’s choruses sing for their supper; What I Wish I Knew, But Am Glad I Didn’t Know (When I Was Diagnosed With Parkinson’s); and more

This is a round-up of Parkinson’s Disease news and information that caught our attention last week.

On-line PD Exercise Programs – PD On The Move

Alexander Tressor is a broadway dancer and ballet instructor who was diagnosed with Parkinson’s in 2007. He founded PDOnTheMove.com to share the exercise programs and lifestyle changes that have worked for him fight back against Parkinson’s. If you’re looking for ideas to improve or extend your home exercise routine, his website is a fantastic resource with hours of suggested workouts and a free library of individual exercises.

More: https://pdonthemove.com/

Gifted with a fantastic sense of humor, he also spends time as a motivational speaker for Parkinson’s groups. His 2012 video “Shaken, Not Stirred” is a YouTube Parkinson’s classic…light-hearted, entertaining and educational:

 

On-line PD Exercise Programs – Daily Dose PD

Speaking of exercise, a local TV station in Seattle reports on Nate Coomer’s online exercise program for Parkinson’s Disease, the Daily Dose PD: https://komonews.com/news/healthworks/parkinsons-patients-find-power-thru-exercise

Earlier this year, Nate Coomer, founder of The Parkinson’s Fitness Project, launched The Daily Dose: an exercise program designed to benefit those with Parkinson’s Disease that can be done from the comfort of their own home, while still providing the benefit of community and guidance by a certified physical therapist. https://www.dailydosepd.com

Blog of the Week

Allison Smith, better known as The Perky Parkie, shares an insightful and entertaining look at the “on” side of “off and on” periods with PD. Admittedly, I’ve never felt the urge to dance with my dog when I’m “on”, but they both seem to be having a good time. It made me laugh…

https://www.perkyparkie.com/2019/05/what-it-feels-like-to-be-on/

Absentee Ballot Rejected Over Parkinson’s Signature Issues

In Indiana, your ballot can be rejected and you would never know it, according to a new federal lawsuit. The suit is challenging the constitutionality of an Indiana law that allows election officials to discard absentee ballots if they don’t think the signature on the envelope matches other signatures on file with the county. The lawsuit is filed on behalf of government accountability group Common Cause Indiana and four voters in St. Joseph County whose ballots were not counted because of questions about their signature. One of these voters, 69-year-old Mary J. Frederick, has Parkinson’s disease. “Because of her Parkinson’s, her signature becomes increasingly illegible as the day goes on, although her signature has never been questioned by her bank or anyone else,” the lawsuit says. https://eu.indystar.com/story/news/politics/2019/05/16/indiana-common-cause-absentee-ballot-lawsuit-votes-thrown-out-illegally/3691931002/

Singing For Your Supper

Singing, as a therapy for Parkinson’s, continues to garner attention as a therapy for Parkinson’s Disease. Benefits of this therapy include maintaining a louder volume when speaking (a challenge for many people with Parkinson’s) and increased respiratory strength. An article from the Worcester (Massachusetts) Telegram tells the story of a Parkinson’s chorus, and highlights it’s benefits in facilitating socialization, particularly for those with more advanced PD.

When an 81 year old woman who has dealt with Parkinson’s Disease for 25 years says “The chorus is the most important thing in my life,” you get a better idea of how these programs can make a difference:
https://www.telegram.com/news/20190512/singers-in-parkinsons-chorus-find-inspiration-and-meaning

On the subject of singing, a research study in Australia attempts to measure the benefits of a particular singing therapy program for people with PD: https://parkinsonsnewstoday.com/2019/05/17/singing-therapy-may-prevent-communication-impairment-parkinsons-patients/

Another Clinical Trial Disappoints (Placebos Win Again)

Atlas Obscura tells the fascinating history of “The Livestock Living at the End of the World”, feral pigs that roam The Auckland Islands, a subantarctic archipelago now considered part of New Zealand: https://www.atlasobscura.com/articles/what-lives-on-auckland-islands

Why are we interested in these pigs?

On the mainland of New Zealand, Living Cell Technologies (LCT) keeps a small herd of Auckland Island pigs in a secured, high-tech quarantine facility, where each one—according to Willis—is worth close to $450,000.

“Due to 200 years of isolation after they were left on the island, the Auckland Island pigs are free from viruses [and] pathogens which affect most other pigs,” says LCT CEO, Ken Taylor. While widespread pig-borne viruses have been a major obstacle in xenotransplantation, or grafting cells from animals for use in human therapies, the Auckland Island pigs haven’t been exposed to them.

Using cells sourced from the virus-free Auckland Island pigs, LCT is testing an experimental therapy for Parkinson’s Disease called NTCELL. Support cells, which secrete cerebrospinal fluid and support the natural function of the nervous system, are taken from a sedated pig’s choroid plexus and inserted in capsule form into a damaged site of the human brain. According to Taylor, the therapy is currently undergoing Phase IIb trials.

Sadly, LCT announced this week that this phase IIb trial met safety goals but not efficacy  goals. The company is “seeking advice from both our statistician and a panel of internationally recognized experts on clinical studies in Parkinson’s disease to help interpret the data further.” Of particular interest in  the press release was a curious statement referencing “6 placebo patients … in whom responses were quite varied.”
http://www.lctglobal.com/upload/news/2019/190513%20Phase%20IIb%20trial%202%20year%20results.pdf

Placebos, Again

Researchers hate the placebo effect. Millions of dollars are wasted in failed critical trials when promising drug candidates or treatments fail to perform better than fake placebo treatments.

If you missed it last week, or didn’t have time to watch a 20 minute long video, we think you’ll find our theories on Parkinson’s placebos quite interesting.

We look at this issue from a different perspective. Why are placebos more of a factor when it comes to Parkinson’s? (Spoiler alert: We think it’s dopamine.) Can we leverage what we learn about placebos to create our own placebo effects? (Spoiler alert: You’re probably already doing this to some extent.)

Maybe it’s a vitamin & supplement regimen, or your diet. Maybe there are foods you will or will not eat at particular times of the day. Maybe it’s your art or music. Maybe it’s your exercise routine. Maybe it’s your bicycle. Maybe it’s swimming. Maybe it’s dancing. Maybe it’s meditation. Maybe it’s neurofeedback. Maybe it’s yoga or tai chi. Maybe it’s a sport. Maybe it’s table tennis. Maybe it’s poetry. Maybe it’s your gun therapy. Maybe it’s a red light bucket on your head. Maybe it’s volunteer work.

Placebos aren’t just in research studies, they are all around us. Understanding how and why they affect us, and how dopamine is involved, gives us additional insight into Parkinson’s Disease.

https://parkinson.fit/placebo/

Blame It On The Dopamine

Speaking of dopamine (the neurotransmitter that we just can’t get enough of), a recent study looks at dopamine’s role in forming new memories. Could this be why your long term memory is rock solid, but you can’t remember what you ate for breakfast?

https://www.healthline.com/health-news/researchers-come-up-with-simple-game-to-improve-memory

What I Wish I Knew, But Am Glad I Didn’t Know (When I Was Diagnosed With Parkinson’s)

This title sounds like something Yogi Berra might have said. Like baseball, Parkinson’s Disease is 90% mental and the other half is physical. (I think that’s actually quite a profound analysis of life with PD.)

What I wish I knew when I was first diagnosed with Parkinson’s is that a lot of people continue to lead long active lives with Parkinson’s Disease for 10 to 20 years, and even longer, and some actually lead more active and more productive lives post-diagnosis.

John Cleese once said, “Life is a terminal disease, and it is sexually transmitted.” Parkinson’s by contrast, is neither. https://parkinson.fit/forums/topic/what-i-wish-i-knew-but-am-glad-i-didnt-know-when-i-was-diagnosed-with-parkinsons/

Parkinson’s Exercise Programs in the News:

Cape Girardeau, Missouri (Christian Boxing Academy) – https://www.kfvs12.com/2019/05/14/fighting-parkinsons-ringside-view-patients-taking-back-their-lives/

Lake Norman, North Carolina (Rock Steady Boxing) – https://www.wbtv.com/2019/05/13/boxing-gym-helps-people-with-parkinsons-disease-fight-get-stronger/

 

Previous Week – May 11, 2019

Parkinson’s Disease: Placebo Effect & Dopamine

Researchers hate the placebo effect, but for many of us with Parkinson’s, placebos help get us through the day.

Maybe it’s a vitamin & supplement regimen, or your diet. Maybe there are foods you will or will not eat at particular times of the day. Maybe it’s your art or music. Maybe it’s your exercise routine. Maybe it’s your bicycle. Maybe it’s swimming. Maybe it’s dancing. Maybe it’s meditation. Maybe it’s neurofeedback. Maybe it’s yoga or tai chi. Maybe it’s a sport. Maybe it’s table tennis. Maybe it’s poetry. Maybe it’s your gun therapy. Maybe it’s a red light bucket on your head. Maybe it’s volunteer work. Maybe it’s trainspotting, planespotting, cranespotting, drainspotting or brainspotting. (I didn’t even know that was a thing!) Maybe it’s social media. Maybe it’s anti-social media. Maybe you’re a smart ass, and you think a serious research effort exploring inflamed monkey bowels is a reason to talk about Anti Monkey Butt Powder. (Sorry, but sarcasm and snark are part of my Parkinson’s therapy, so don’t question my placebo, it seems to be working.)

But seriously, placebos and the placebo effect are a fascinating phenomenon that is particularly relevant to Parkinson’s Disease. Placebos aren’t just in research studies, they are all around us. And personally, I think that understanding how and why they affect us gives us the opportunity to create our own placebo effects.

From the first time I read about it, I’ve been fascinated by the placebo effect. The placebo effect is a big challenge in clinical trials for a new drug or treatment. In these so-called double blind studies, there is one group of patients that receives the treatment and another group that receives a fake treatment known as the placebo. The patients, and those evaluating the patients do not know who is receiving the real treatment or the placebo until the end of the study. For a treatment to be deemed effective, the patients who received the treatment need to fare better than the placebo group in a statistically significant way. In other words, the treatment being tested has to prove that it’s better than nothing…a challenge that is surprisingly difficult to meet.

A big part of the problem in trials related to Parkinson’s Disease is that there are significant numbers of individuals that see improvement during these tests as part of the placebo group. This has fascinated me. I’ve wanted to understand this better, so that I can create my own placebo effect.

I created a presentation video to explain why dopamine’s significance in Parkinson’s Disease invites the placebo effect and offer some suggestions how people with Parkinson’s can leverage this to create placebo effects.

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Can the action of volunteering and fund raising for PD research improve your Parkinson’s symptoms today?

What is this unexpected placebo effect of volunteerism?

I’ll admit it’s an odd question to ask, “Can the action of volunteering and fund raising for PD research improve your Parkinson’s symptoms today?”

However, I believe that there is an interesting argument for how the action of volunteering and fund raising for PD research not only helps enable research that will benefit Parkinson’s patients in the future, but can also improve your Parkinson’s symptoms today.

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Parkinson’s Disease – The Placebo Effect, Genetics and the Placebome

While traveling back home on a long cross country flight, I got a chance to read a fascinating book, “Suggestible You: The Curious Power of Your Brain to Deceive, Transform and Heal” by Erik Vance. The first few chapters are all about the placebo effect, and how some conditions, such as Parkinson’s Disease, are particularly prone to it.

placeboIn a nutshell, the placebo effect is the big challenge in phases 2 & 3 of a clinical trial for a new drug or treatment. In these so-called double blind studies, there is one group that receives the treatment and another group that receives a fake treatment known as the placebo. The patients, and those evaluating the patients do not know who is receiving the real treatment or the placebo until the end of the study. For a treatment to be deemed effective, the patients who received the treatment need to fare better than the placebo group in a statistically significant way. In other words, the treatment being tested has to prove that it’s better than nothing…a challenge that is surprisingly difficult to meet.

Read More