May 26, 2019 – Parkinson’s Weekly Update

Weekly Update – Highlights include: Looking ahead to World Parkinson Congress 2019 and back at WPC2016; a vacuum cleaner analogy that sucks; Help Wanted (for this website); dyskinesias Dancing; Losing your grip (and where to look for it); don’t take CBD Oil to Disney; pick your PD therapy – hockey or karate; research study says strength training makes you breathe hard; Kirk Gibson; Olympic dreams for PD skier; reducing dementia risk; and more

If this week’s report is a bit brief, there are two reasons. First, it’s a bank holiday weekend for my good friends in the UK, and Memorial Day weekend here in the US. This makes a good excuse for doing something outside, getting together with friends, and doing your best to put Parkinson’s to the side. Bring an extra dose of carbidopa/levodopa with you, just in case the day goes longer than anticipated.

The second reason is that I’m prepping for a trip to the World Parkinson Congress in Kyoto, Japan. The conference is a little over a week away, but I’ve planned a family trip around it, and we’re planning to visit Beijing and Tokyo enroute to Kyoto.

The World Parkinson Congress is a conference that is held every 3 years. I attended the 2016 event in Portland and wrote a blog entry about my observations:

The 2016 event brought together over 4500 delegates from 65 countries. It’s an eclectic mix of medical professionals, neurologists, physical therapists, researchers, charities, support organizations, patients, caregivers, and pharmaceutical reps…lots of pharmaceutical reps.

HooverAll said, it’s a time to set the mental Hoover on maximum suction, and take in as much information as possible. (Don’t worry, we are packing all the attachments, because sometimes the information is in hard to reach corners.) 

There’s a lot of learning to be done, and I look forward to sharing observations from the conference over the coming weeks.

While the lectures and workshops are very good, at the 2016 event, I was most intrigued by the book nook and particularly, the poster hall.

The book nook always has a few books from PwP who have interesting stories to tell. And the poster hall is…well…eclectic. It’s a mix of research briefs, information on community programs and resources, and basically anything related to Parkinson’s.

Help WantedThe posters I found most interesting in 2016 were by people with Parkinson’s. So, this year, I’m hanging up a Parkinson FIT poster, with a “Help Wanted” sign. Basically, I’m looking for people who are interested in collaborating with me to enhance this website, and create one of the premier Parkinson’s websites. I’m looking for writers, editors, bloggers, vloggers, content curators…anyone who wants to contribute to the effort. (More on this in a few weeks, because this is an open call for interested potential collaborators.)

On to the news…

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

The American Parkinson Disease Association (APDA) published a comprehensive FAQ about carbidopa/levodopa therapy:

One of the biggest concerns about levodopa medication, especially for younger onset Parkinson’s is dyskinesias. Dyskinesias are involuntary muscle movements, and frequently a back-and-forth”sway” that many associate with Parkinson’s Disease, but are actually a side effect of medication. The Science of Parkinson’s website has a great article explaining what is known about dyskinesia:

A somewhat bizarre grip related research study reminded us about the significance of grip issues. Losing your grip is more than just an analogy about Parkinson’s Disease. Quite literally, it’s a physical manifestation of the disease, and one of the areas that is tested in the Unified Parkinson’s Disease Rating Score (UPDRS) motor score that is used to measure the severity of Parkinson’s Disease.

If you are not already taking CBD Oil to help Parkinson’s symptoms, chances are that you have more than one friend or relative who is frequently recommending it. Experts estimate that 7% of Americans already use CBD Oil. Should you try it? We don’t know. We suspect if it helps, it is a placebo effect, but we also acknowledge that Parkinson’s affects us all in different ways, and just because it works or doesn’t work for one person doesn’t mean another individual will experience the same effect. But what we do know is that if you’re taking your family to Disney World, don’t take it with you, or Mickey’s zero tolerance drug policy may mean you spend the night behind bars, as one great grandma found, when hers tested positive for traces of THC (the psychoactive component of marijuana).

Of course she’s suing and there’s undoubtedly far more to this story, including a very good possibility that this incident was a premeditated attempt to score her family a free trip to Disney. (Never underestimate what a great grandmother will do for her family.) Traces of THC are one potential issue, but another concern is misleading and counterfeit product being sold doesn’t actually contain CBD, or is heavily diluted. The issue of whether a particular brand is reputable is minor compared to the issue of counterfeiting and questionable supply chains, as the product finds its way to your local pop-up CBD shop.

Hockey therapy for Parkinson’s Disease is a great reminder that if there is a sport that you love, it can make a great therapy to help treat your PD symptoms. Here’s one man’s story:

Karate is a great option for balance training, and a Michigan man shows us that Parkinson’s may make the task more challenging, but a black belt is still within reach:

Meanwhile, a study at Rush University in Chicago is taking a closer look at how karate training can benefit people with Parkinson’s:

Researchers found that putting older people with Parkinson’s through a strength training program made them breathe heavier. (At least that’s my layman’s takeaway.)

Trunk flexion exercises were found beneficial in reducing forward stoop

Baseball legend Kirk Gibson talks about his Parkinson’s battle:

A former Olympic cross country skier has been diagnosed with Parkinson’s, and he’s training hard, in an attempt to qualify to compete again at the 2022 Winter Olympics in Beijing:

A reminder about the dangers of dopamine agonist medications and addictive behavior with a case study of a Greek man who developed a severe gambling addiction after being prescribed pramipexole (Mirapex):

Parkinson’s Exercise Programs in the News

Off The Ropes (Parkinson’s Boxing) – Boulder, Colorado

Parkinson’s Blog Highlights

Sherri Woodbridge addresses the shorts or pants dilemma, and reminds us that scars are part of the natural healing process, both physically and psychologically.

Mariette Robijn has a way with words, and is indulging her creative muse in with an epic journey searching for a way out, or a way through, the Kingdom of Parkinson’s. It all begins with  getting stuck on the wrong side of a gate and a realization about collarbones. Now up to the seventh installment in the series, she is talking to books. Follow the journey at

Reducing the Risk of Dementia

Finally, two interesting publications were released last week addressing brain health and reducing the risk of dementia. (The risk is extremely high for people with Parkinson’s.)  The Michael J. Fox Foundation (MJFF) offers the easiest to read advice:

A publication from the World Health Organization (WHO) is a tougher read, as its target audience is health professionals:

As you’d expect, there aren’t necessarily any surprises, but there are a few things you might gloss over that could be significant.

WHO leads with a strong recommendation for exercise/physical activity. Surprisingly, this is not even mentioned by MJFF, but it’s probably a given because exercise recommendations are already stressed for people with PD.

MJFF leads with “be socially active”. WHO says “There is insufficient evidence for social activity and reduction of risk of cognitive decline/dementia.” I thought this was funny, because I suspect many of these researchers are still bitter about not getting invited to the good parties at college. But seriously, WHO does concede it’s a good idea, as social activity is “strongly connected to good health”. There just isn’t specific evidence that it reduces dementia risk.

MJFF has a reminder to review medications, particularly drawing attention to Artane (trihexyphenidyl) and Benadryl. Trihexyphenidyl was the first prescription I was given after I was diagnosed with Parkinson’s. I decided to stop taking after several months, as I suspected it was causing occasional blurred vision. Several months later, a study reported that longer term use of anticholinergic drugs, including trihexyphenidyl and over-the-counter Benadryl, were associated with increased risk of dementia.

MJFF recommends reducing stress and getting a good night’s sleep.

Both recommend treating high blood pressure, high cholesterol and diabetes, to reduce dementia risk.

WHO also recommends stopping smoking and maintaining a healthy weight.

One more thing…

As I mentioned a couple weeks ago, poetry is not normally my thing, but I have enjoyed the performances by Wayne A. Gilbert that have been shared by the Davis Phinney Foundation over the past few weeks. Wayne is, among other things apparently, a lover, not a fighter. He is also a retired teacher and professor of English and of Educational Psychology. He was diagnosed with Parkinson’s in 2005 and has been writing about his experiences living with it ever since. Last week DPF shared Wayne’s poem “Parkinson’s Is Nothing Like Boxing.”

Previous Week – May 19, 2019

3 thoughts on “May 26, 2019 – Parkinson’s Weekly Update”

  1. Come see me at the poster display on Wednesday. My poster #649 is titled “What are the most important factors for living well with Parkinson’s disease? An informal survey from a women’s Parkinson’s Facebook group”
    I will be at space P41.11
    Sharon Krischer – Twitchy Woman

    1. I look forward to meeting you.

      It looks like my poster will be in the same general area, at space P41.26. If anyone wants to drop by, my poster tour time is between 11:30am and 1:30pm on Thursday.

      I do plan on being around the poster area some other times as well, as it’s a great opportunity to meet interesting people. I’m packing a “will return at” sign to hang under the poster in the event that anyone wants to meet.

  2. thanks for the shoutout re. my poem! And much appreciation to Davis Phinney Foundation for the series of poems we shot together!!! wishing I could be in Kyoto w/y’all!!! have a great time!

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