June 2, 2019 – Parkinson’s Weekly Update

Weekly Update – Highlights include: World Parkinson Congress 2019 heads to Kyoto, Japan for the epic battle of “Parkinson’s Disease vs. Chopsticks – Will We Go Home Hungry?”; focused ultrasound and PD; NIH awards $3 million grant for 5-year PD exercise study; deteriorating financial skills, dementia and brain plaques; hockey pucks for Parkinson’s; inspiring people with PD; how DBS changes lives for the better; does PD cause low testosterone or is it something else; PD exercise programs in the news and more…

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

World Parkinson Congress 2019

The global Parkinson’s community is in final preparations for the triennial World Parkinson Congress. Every 3 years, medical professionals, neurologists, physical therapists, researchers, charities, support organizations, patients, caregivers, and pharmaceutical reps get together to review the latest research, clinical practices and patient/caregiver initiatives. This year, the conference is in Kyoto, which presents a unique challenge for those of us with Parkinson’s – chopsticks. We refuse to go home hungry!

We’ll be there, and will have more to report over the next several weeks. (If you’re at the event, look for us in the poster hall at at space P41.26.)

In the meantime, the Parkinson’s Foundation is previewing their presentations here:

And the Michael J. Fox Foundation is previewing their presentations here:

Spotlight on Focused Ultrasound

Focused ultrasound is frequently featured in the news as a treatment for Parkinson’s Disease tremors, but it is relatively new, and many people with PD are either unaware of it, or confused about how it differs from Deep Brain Stimulation.

Focused ultrasound is often described as a “non-invasive” therapy that uses ultrasonic energy to target tissue in the body. In December 2018, the FDA approved focused ultrasound treatment for Parkinson’s. The Parkinson’s treatment is an MRI-guided ultrasound that creates a lesion on the part of the brain that is causing tremors or dyskinesias. This process essentially destroys a part of the brain, but without a surgical incision. The lack of a surgical incision is why promotors of the procedure refer to it as “non-invasive”, which is a little misleading as it does destroy part of the brain.

Before Deep Brain Stimulation (DBS) became a proven therapy, there were two surgical procedures that were sometimes used to treat PD.  A thalamotomy is where an area of the thalamus in the brain is surgically destroyed, which can lessen tremors. A pallidotomy is where an area of the globus pallidus in the brain is surgically destroyed, which also helps tremors, but is primarily done to treat dyskinesias. If you read Michael J. Fox’s autobiographies, you’ll recall he had a thalamotomy back in 1998. DBS was approved for PD in 1997, and quickly proved more popular, as it is not destructive. DBS targets the same areas of the brain as these other procedures, applying electrical stimulation instead. 

The problem with DBS is that it is a surgical procedure. Especially for older patients with additional health considerations, the risks and recovery time may rule out DBS. Focused ultrasound provides a new way to perform the older procedures, but without surgery, which makes it viable for patients where DBS presents more risk. Focused ultrasound is also less expensive. 

Currently, in the US, focused ultrasound treatment for PD is approved only for a single side of the brain, making it effective primarily for people with tremors on one side of the body. Bilateral (both sides) has mot been approved because of high potential for side effects affecting cognition, swallowing and speech. 

Focused ultrasound treatment is also being used to treat essential tremor:

In another interesting development, last week, researchers revealed an exciting new application for focused ultrasound, using ultrasound waves to temporarily open the blood-brain barrier to allow treatments to enter the brain. The blood-brain barrier (BBB) is a shield of blood vessels that protects the brain from germs and threats that are circulating in the bloodstream. The blood-brain barrier’s purpose is to keep the brain healthy by keeping infection out. The problem is that it is extremely effective at preventing many promising drug therapies from reaching the brain when administered orally. It will likely be years before we see therapies that take advantage of this breaching of the blood brain barrier, but it is exiting to see how this could enable new therapies. For more details, see this research study:

In the nearer term, focused ultrasound  therapy is a viable treatment for PD tremors in some individuals, although the one side only restriction is somewhat limiting. If you’re interested in reading  more, WebMD recently published a good article on focused ultrasound:

Research Updates

The National Institutes of Health has awarded Cleveland Clinic researcher Jay Alberts, Ph.D, a 5-year, $3 million grant to conduct a multi-site clinical trial to study the long-term effects of aerobic exercise on slowing the progression of Parkinson’s disease. Alberts has been a pioneer in PD exercise research. This research will build upon previous work done by Alberts and his team. They recently completed a 100-person in-laboratory randomized clinical trial, and results showed an 8-week high-intensity aerobic exercise program significantly improved global motor function and specific aspects of walking and cognitive function in patients with Parkinson’s. There is a need for research of longer term exercise intervention in Parkinson’s Disease, and this new study aims to determine if long-term, high-intensity aerobic exercise can slow the advancement of Parkinson’s disease. Cleveland Clinic and University of Utah will recruit 250 Parkinson’s patients who will be randomized to a high-intensity home exercise or usual and customary care (UCC) group. The CYCLE Trial exercise group will utilize indoor cycling bikes from fitness technology company Peloton.

Measuring the amount of alpha-synuclein in tiny vesicles collected from blood serum may help diagnose early Parkinson’s and identify patients with different types of this disease:

Aging adults often show signs of slowing when it comes to managing their finances, such as calculating their change when paying cash, balancing a checkbook, or leaving a tip at a restaurant. These changes happen even in adults who are cognitively healthy. But trouble managing money can also be a harbinger of dementia and, according to new Duke research in The Journal of Prevention of Alzheimer’s Disease, could be correlated to the amount of protein deposits built up in the brain. Testing revealed that specific financial skills declined with age and at the earliest stages of mild memory impairment. The decline was similar in men and women. After controlling for a person’s education and other demographics, the scientists found the more extensive the amyloid plaques were, the worse that person’s ability to understand and apply basic financial concepts or completing tasks such as calculating an account balance.

We try not to get too excited about research studies that primarily involve in vitro (controlled environment outside of a living organism), but a few people have pointed out another Vitamin B12 study that was reported by Parkinson’s News Today, where Vitamin B12 shows promise in breaking down clumps of¸alpha-synuclein: https://parkinsonsnewstoday.com/2019/05/30/vitamin-b12-may-protect-nerve-cells-alpha-synuclein-clumps/

Inspiring People with Parkinson’s

The World Parkinson Congress has a video competition for inspiring Parkinson’s videos. The winner will be announced next week, but all 12 finalists all have stories worth sharing: https://parkinson.fit/world-parkinson-congress-2019-video-competition/

Pucks for Parkinson'sScott Carlisle was diagnosed with Parkinson’s disease 5-1/2 years ago. Playing hockey is an activity helps him with movement and balance. He and his brother Royce started the Pucks for Parkinson’s Foundation in Ames, Iowa, to raise money for PD research, and promote awareness for the importance of exercise and physical activity, such as hockey, to improve Parkinson’s symptoms:

David Sangster was diagnosed with young onset Parkinson’s Disease 8 years ago at the age of 29, and has been extremely active as an advocate for Parkinson’s issues in the UK. Worsening motor symptoms and Dyskinesia led him to consider Deep Brain Stimulation (DBS). Last week, he shared a powerful before and after DBS video:

It took Fred Schwab over 10 years to figure out that symptoms he was experiencing were actually Young Onset Parkinson’s Disease. Since diagnosis, he’s focused on exercise, especially with a local Rock Steady program. This morning he’s competing in a triathlon in Pittsford, New York to raise funds for PD research, and awareness for the importance of exercise to improve Parkinson’s symptoms: https://www.whec.com/news/man-with-parkinsons-disease-to-compete-in-pittsford-triathlon/5372853/

Three years ago, Jonny Acheson, a doctor based in Leicester, UK, decided to “draw the story of his diagnosis”. Since then, he has been sketching out his Parkinson’s symptoms, as well as using them to produce a series of short films about the condition – one of which is from the perspective of his nine-year-old daughter.  Parkinson’s Life talks to Jonny about the difficulties of working in a busy emergency room with Parkinson’s, how his faith gives him strength – and what a child’s perspective can reveal about the condition: https://parkinsonslife.eu/parkinsons-through-my-9-year-old-eyes/

BBC News reporter Rory Cellan-Jones was reporting from Covent Garden, giving a report as  the first ever news broadcast using a public 5G network in the UK. After millions of viewers tuned in to watch the event on BBC Breakfast, a handful of people noticed his shaky hand. Their comments prompted the journalist to reveal that it was a physical symptom of his recently diagnosed Parkinson’s Disease. Cellan-Jones wrote on Twitter: “A couple of people have noticed my hand shaking in my live 5G broadcast today. So seems a good time to reveal that I’ve recently been diagnosed with Parkinson’s. I’m getting good treatment and the symptoms are mild right now – so I’m carrying on as normal. Onwards and upwards!” His diagnosis and openness in discussing Parkinson’s Disease is inspiring others:  https://www.bbc.co.uk/news/amp/entertainment-arts-48458468

South Australian football legend Mark Mickan shares his experience with Deep Brain Stimulation (DBS) surgery:

Deep Thoughts and Interesting Perspectives

Blogger Rick Copple has been extremely satisfied with his Deep Brain Stimulation experience, but less than satisfied with Parkinson’s effect on his sex drive. This can be an awkward topic, but Rick has some interesting insight, which thankfully it is not at all graphic. He had convinced himself that Parkinson’s was causing low testosterone levels, but in the end, this was not the case, and his issues appear to have more to do with low dopamine: http://rickspdjourney.blogspot.com/2019/05/low-t-update.html

We’re fascinated by dopamine, especially with the boundaries between its neurological and psychological roles, like we explored in our presentation on the placebo effect . When it comes to dopamine, I guess that as the old adage says, we always want what we don’t have.  We stumbled across a research journal article from 2 years ago with some interesting thoughts: “The Missing, The Short, and The Long: L-Dopa Responses and Dopamine Actions“. Of particular general interest is a review of previous research that explored how some effects of levodopa were experienced shortly after taking a dose, other effects did not occur until several days after reaching stable daily levodopa doses.  These different levodopa effects are characterized as short duration response (SDR) and the long duration response (LDR). From that general interest starting point, the authors dive deep into exploring dopamine’s roll in the crossroads of neurology and psychology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5526730/

Parkinson’s Exercise Programs in the News


Previous Week – May 26, 2019

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: https://parkinson.fit/reflections-on-world-parkinson-congress-2016/

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: https://www.apdaparkinson.org/article/common-questions-about-carbidopa-levodopa/

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: https://scienceofparkinsons.com/2019/05/15/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.
More: https://parkinson.fit/forums/topic/got-parkinsons-get-a-grip/

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: https://kdsm17.com/news/local/solace-on-the-ice-urbandale-man-living-with-parkinsons-calls-hockey-his-best-medicine

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: https://www.wzzm13.com/mobile/article/news/local/rockford/rockford-man-with-parkinsons-earns-black-belt/69-8d4bb917-3508-46ad-8ee3-e9c2b9f5da61

Meanwhile, a study at Rush University in Chicago is taking a closer look at how karate training can benefit people with Parkinson’s: https://wgntv.com/2019/05/23/karate-helps-parkinsons-patients-with-mind-body-connection-and-more/

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.) https://www.ncbi.nlm.nih.gov/pubmed/31113177?dopt=Abstract

Trunk flexion exercises were found beneficial in reducing forward stoophttps://parkinsonsnewstoday.com/2019/05/22/torso-exercises-helped-reduce-severity-of-forward-stoop-in-parkinsons-patients/

Baseball legend Kirk Gibson talks about his Parkinson’s battle: https://detroit.cbslocal.com/2019/05/22/the-kirk-gibson-foundation-for-parkinsons/

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: https://newyork.cbslocal.com/2019/05/24/snapshot-new-york-olympian-tries-for-glory-amid-battle-with-parkinsons/

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): https://www.dailymail.co.uk/health/article-6823309/Parkinsons-patient-74-addicted-GAMBLING-bizarre-effect-medication.html

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: https://www.michaeljfox.org/foundation/news-detail.php?boost-your-brain-health

A publication from the World Health Organization (WHO) is a tougher read, as its target audience is health professionals: https://apps.who.int/iris/bitstream/handle/10665/312180/9789241550543-eng.pdf

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.  https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-201501287667

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