Parkinson’s Weekly Update

Weekly Newsletter

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June 16, 2019 – Parkinson’s Weekly Update

Weekly Update Highlights: Parkinson’s Disease and the nagging spouse; Parkinson’s Si Buko (the must-read inspiring effort in Uganda to educate that PD is not witchcraft); Generic Carbidopa/Levodopa Extended Release; Gut Bacteria Interferes with Parkinson’s Disease Medication; PD research updates; diet and nutrition for Parkinson’s; PD exercise programs in the news; and more.

As World Parkinson Congress 2019 fades into memory, indulge me as I share an anecdote that in the interest of marital bliss probably should have been left unshared.

My wife went to one session at the World Parkinson Congress 2019 without me.  It is my fault. I suggested it. I had another time commitment, so I suggested that she use the time to go to a panel discussion about living well with Parkinson’s.

I wasn’t there, so I don’t know exactly what was said, or the context in which it was said. I only know what she told me she heard. Her takeaway from this session was that one of the panelists said that one of their keys to living well with Parkinson’s was that it was very helpful to have a nagging spouse.

I cannot imagine which panelist would have said this, or the full context of their remark.

Perhaps it was misstated, or perhaps it was misheard?

Perhaps it had been intended as sarcasm?

Perhaps they were speaking under duress and this was a thinly veiled cry for help?

Perhaps they actually meant it?

I cannot say for sure as I was not there. I can only wonder and speculate (two areas of skill in which I am particularly gifted), so let’s explore the pros and cons of nagging and Parkinson’s Disease:

With that diversion behind us, here are some other interesting Parkinson’s news highlights from the past week:

Generic Carbidopa/Levodopa Extended Release

Carbidopa/Levodopa (Sinemet) is widely considered to be the “gold standard” (most effective) treatment for managing Parkinson’s Disease symptoms. However, it’s period of effectiveness is quite limited, with a typical wearing off time of approximately 4 hours.

Several years ago, an extended release formula was introduced under the brand name Rytary. However, many pharmaceutical insurance plans will only cover generic carbidopa/levodopa, leaving the extended release formulation outside of the budgetary reach of most people with Parkinson’s.

Parkinson’s News Today reports that generic drug manufacturer Alembic Pharmaceuticals has received US FDA approval for their extended release formulation of carbidopa/levodopa, which suggests that this will soon be an  option for many more people:

Press release:

Gut Bacteria Interferes with Parkinson’s Disease Medication

Hardly a week goes by where there isn’t another study exploring the connection between gut bacteria and Parkinson’s Disease. While research continues to try to understand exactly how different strains of gut bacteria are involved in the development and/or progression of PD, two recent studies shows how particular types of gut bacteria can actually eat levodopa, and interfere with the effectiveness of levodopa drug treatment for Parkinson’s Disease.

Gut bacteria is not an infection or medical condition. We all have gut bacteria, a complex community of microorganisms that live in our digestive tracts. Modern science refers to this our microbiome. There are as many of these bacteria cells in our body as there are our own human cells. Our body has a symbiotic relationship with these microorganisms. The composition of each person’s microbiome varies so much that we are still trying to identify and understand their differences. (For example, a recent February 2019 study just identified 2000 previously unknown species of gut bacteria. See

Back to PD…

As PD patients know, levodopa is usually taken orally, and is absorbed in the small intestine and then transported through the bloodstream, crossing the blood brain barrier to enter the brain. Decarboxylase enzymes in the gut can convert levodopa into dopamine prematurely. In contrast to levodopa, dopamine cannot cross the blood-brain barrier, so levodopa is combined with a decarboxylase inhibitor, usually carbidopa. Carbidopa prevents the levodopa to dopamine conversion in the gut, allowing it to make it to the brain.

But guess what? Some gut bacteria have a different type of decarboxylase enzyme, which normally converts tyrosine into tyramine, but was found in this study to also convert levodopa into dopamine, before it can make it to the brain.

This is believed to be one of the reasons that some individuals need higher doses of carbidopa/levodopa to see an effect. And why antibiotic treatment (which can kill off gut bacteria) sometimes leads to improved Parkinson’s symptoms, due to decreased gut bacteria interference with medication.

Back in March, we discussed the results of a study from the University of Groningen in the Netherlands:

Last week, Harvard researchers weighed in, trying to identify specific strains of gut bacteria that cause this, focusing on Enterococcus faecalis. For more on this Harvard study, see:

More Parkinson’s News

Purdue University has identified a protein which shows promise for developing new Parkinson’s Disease treatments. Does anyone else find it funny that the name of this protein is HYPE?

An open label, small Phase 1 study of 19 people with Parkinson’s Disease claims to see UPRDS and PDQ-39 score improvements over the course of a 24 week study of treatment with CuATSM. CuATSM, initially developed to aid PET imaging, is believed to selectively release copper in cells with damaged mitochondrial electron transport chains, which are characteristic of many neurodegenerative diseases, including ALS/MND, Parkinson’s disease, Huntington’s disease, and Alzheimer’s disease.

Parkinson’s News Today reports that a potential one-time gene therapy for Parkinson’s disease associated with mutations in the GBA1 gene, PR001, will move into clinical testing in patients after the U.S. Food and Drug Administration (FDA) accepted an application for the therapy:

We frequently emphasize the importance of grip exercises for people with PD. Researchers at the University of Basel (Switzerland) are studying reaching and grasping, and how learning fine motor coordination changes the brain and promotes neuroplasticity. When we train the reaching for and grasping of objects, we also train our brain. In other words, this action brings about changes in the connections of a certain neuronal population in the red nucleus, a region of the midbrain. Researchers have recently discovered this group of nerve cells in the red nucleus. They have also shown how fine motor tasks promote plastic reorganization of this brain region.
Briefly Noted

Last week we mentioned Laurie Mischley’s diet and nutrition for Parkinson’s research:
For the past few summers, she has hosted a week long “PD Summer School”, a program full of therapeutic strategies and tips designed to improve the lives of individuals with Parkinson’s disease:

Wired Magazine UK published an interesting article about Erin Smith, the founder of FacePrint, a technology startup that aims to diagnose Parkinson’s Disease with a mobile phone camera by analyzing facial expression:

Not directly Parkinson’s related, but a fascinating story of an 11 year old boy suffering dyskinesias resembling those of people with Parkinson’s, who is being successfully treated with a regimen of 2 espressos per day:

Inspiring People with Parkinson’s

Winnipeg (Canada) resident Steve Van Vlaenderen isn’t letting Parkinson’s keep him away from his dream of sailing the Great Lakes, while simultaneously raising funds for Parkinson’s Canada:

Blog of the Week

Gavin Mogan has lived with Parkinson’s for 11 years, and finds exercise and a positive attitude essential to maintaining a good quality of life. He is also a certified personal trainer in Richardson, Texas, offering personal and group training, with a particular focus on helping others battling Parkinson’s or other health issues. Gavin’s website is

Gavin recently traveled to Uganda, to learn from, and to offer support to a Parkinson’s advocacy program in that country.  On his blog, he wrote about this experience, sharing the story of Kabugo Hannington, a municipal health inspector who was moved to learn more about Parkinson’s after witnessing his mother suffering from both HIV and Parkinson’s.

In 2017, Hannington began a campaign to dispel the local myth that Parkinson’s is witchcraft, which is the origin of the project name Parkinson’s Si Buko (Parkinson’s is not witchcraft in native Ugandan tongue). Gavin provides a more detailed introduction in part 1 of this series:

Part 2 includes a fascinating story of a roadside encounter where Hannington identities a PD sufferer based upon observing his walk, and an encounter with a witch doctor with Parkinson’s. Ironically, the witch doctor recognizes PD is not witchcraft, because if it was, he could cure it:

Part 3 of the series tells us more about Kabugo Hannington, who Gavin concludes must be a superhero, the Parkinson’s batman:

The series concludes (for now) with Gavin heading back home, pondering how he can help, and sharing some insightful commentary on compassion and awareness:—concluding-thoughts

Thanks to plentiful access to information and medication, in the developed world, it is possible to maintain a good quality of life with Parkinson’s. Those with PD in many low-income countries have no such opportunity.  In fact, it’s commonly believed among many that Parkinson’s is the result of witchcraft! Thus, a relatively manageable disease, at least early-on, is rendered a crippling, hopeless malady tearing families apart. It doesn’t have to be this way.  Conditions are already changing in Uganda.  Consider donating to Gavin Mogan’s funding campaign to raise money to support Parkinson’s Si Buko in Uganda:

Parkinson’s Exercise Inspiration and Ideas

Moments of Victory® – Zach Guza Knows the Power of Exercise in Living Well with Parkinson’s

How tennis helps Parkinson’s symptoms

How to Design Your Life with Parkinson’s

Parkinson’s Exercise Programs in the News

Previous Week – June 10, 2019

June 10, 2019 – Parkinson’s Weekly Update

World Parkinson Congress 2019 Highlights: Remembering Tom Isaacs; Advice to caregivers: “Be a bit more of a selfish pig”; triple amputee with PD exclaims “If I can do it, you can do it. Get out and go!”; PD diet & nutrition study analyzes real world diet of people with PD to determine what helps and what doesn’t; “Living Well, Running Hard: Lessons Learned from Living with Parkinson’s Disease”; plus a weekly roundup of Parkinson’s related news…

WPC2019World Parkinson Congress 2019, the premier global Parkinson’s Disease conference, took place in Kyoto (Japan) last week. Held every 3 years, the event was a bit smaller than WPC 2016 in Portland Oregon (USA), drawing around 3000 attendees compared to 4500 at the previous event. Undoubtedly, this was not due to a lack of interest, but due to more expensive and more difficult travel for those interested in attending.

WPC draws an eclectic mix of medical professionals, neurologists, physical therapists, researchers, charities, support organizations, people with Parkinson’s, caregivers, and pharmaceutical reps.

It’s actually quite amazing that the event organizers are able to develop a program that engages this diverse audience.

The opening ceremony was a definite highlight. As expected, it featured a moving tribute to Tom Isaacs, who passed away in 2017. Tom was a co-founder of Cure Parkinson’s Trust (CPT) in the UK, one of the premier global charities funding Parkinson’s research. In addition to leading CPT, Tom’s outsized personality encouraged us all to live well with Parkinson’s Disease, and he was an active participant in past WPC events. We previously shared some videos that pay tribute to Tom Isaacs here:

Anders Leines’ video, which was in large part, a tribute to Tom Isaacs, was selected as grand prize winner of the WPC 2019 video competition.

The Selfish Pig's Guide to CaringTom’s widow, Lindsay Isaacs, spoke during the WPC 2019 opening ceremony. I was moved by her personal story as a caregiver, as she touched on her struggles, how she had reached a breaking point, and found a way forward with inspiration from a book, which advised “Don’t be such a good carer…try and be a bit more of a selfish pig.” More:

Another highlight of the opening ceremony was keynote speaker Linda K. Olson. In 1979, at the age of 29, Linda lost both her legs above the knee and her right arm in a “train vs. car accident” in Germany. She told her husband of 2 years, who was less seriously injured in the accident that if he wanted to leave her, she’d understand.  He responded “I didn’t marry your arms and your legs … if you can do it, I can do it.”

They chose to focus on what they could do, not what they couldn’t do. And they did a lot. Both had successful careers in radiology. They raised a family, and led very active lives.

In 2015, now in her mid-60’s, Linda was diagnosed with Parkinson’s Disease. Today she is committed to empowering Parkinson’s patients and families to live life as full as possible, in spite of their disabilities, and to get up, get out, and go. More:

I haven’t yet had enough time to organize and write about all of the interesting presentations at the conference, but one of the most interesting presentations for those of us with Parkinson’s was Microbiome and the Diet in PD”, and particularly Laurie Mischley’s presentation on diet and nutrition. Dr. Laurie Mischley of Bastyr University is a leading researcher on diet and nutrition as it relates to Parkinson’s Disease. She wrote a book on the topic that was published back in 2009, and has continued to focus on this topic over the decade since. In 2017, her team published a study titled “Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression“, which analyzed  the dietary practices of people with Parkinson’s Disease and their rate of disease progression. The goal was to attempt to identify food and/or nutrition that were associated with either slower (better) or faster (worse) progression of PD. For more on Dr. Mischley’s research, we have previously shared videos of her past presentations on nutrition and PD:

While the presentations were great, my favorite part of World Parkinson Congress was the people. And if you know me personally, this statement may seem a bit puzzling, because I am not exactly what you’d call a “people person”. I am horrible at small talk and initiating conversation. I am introverted and don’t desire or particularly enjoy attention.

But when it comes to ideas and discussion within topics that I find interesting, I can become quite energetic and animated. I have a passion for learning and attempting to better understand these areas of interest.

The great thing about the WPC is that it provides a forum not just for experts to present to a large audience, but that also promotes one-to-one and small group dialog.

The Book Nook and Poster Hall are two such areas. The Book Nook highlights books about Parkinson’s (usually written by people with Parkinson’s), and provides “meet the author” opportunities. The highlight for me in this area was meeting John Ball, author of “Living Well, Running Hard: Lessons Learned from Living with Parkinson’s Disease”:

I also had some interesting discussions in the poster hall, and look forward to analyzing some of this information in more detail before I share it.

This year, I also discovered the round tables, which were an interesting small group setting that gave an opportunity to gather like minded individuals to discuss topics of mutual interest. I had the opportunity to participate in a very small round table group and become acquainted with authors from two of my favorite Parkinson’s websites, and I’m hopeful that we will be able to collaborate on some future projects.

I’ll have more thoughts on WPC next week, but in the meantime, here are some other interesting Parkinson’s news highlights from the past week:

1. The fact that you have Parkinson’s Disease does not exempt you from also developing other diseases or conditions. We think it is worth drawing attention to a recent study that suggests that brushing your teeth may be a way to stave off the development of Alzheimer’s disease. The study provides new evidence of how bacteria associated with gingivitis contributes to the development of the neurodegenerative disease. Our advise is simple: “Spit, Don’t Rinse”

2. High Intensity Interval Training (HIIT) is a key component of many Parkinson’s exercise programs. The Brian Grant Foundation explains what it is, and why it helps:

3. Practical advice for dealing with freezing episodes in advanced Parkinson’s Disease:

4. Promising results from a mouse research study, where experimental drug anle138b breaks down clumps of alpha-synuclein in mouse brains:

5. Researchers at Osaka University in Japan are targeting alpha-synuclein build up with gene therapy:

6. Researchers are developing focused ultrasound therapy to enable drug treatments to penetrate the blood-brain barrier:

7. Scientists have recreated the blood-brain barrier outside of the body, in hopes of being able to better understand how it works:

8. The Trump administration announced that the U.S. federal government would sharply curtail federal spending on medical research that uses tissue from aborted fetuses, by ending fetal-tissue research within the National Institutes of Health.

Inspiring People With Parkinson’s

1. School Principal in Australia shares Deep Brain Stimulation (DBS) experience:

2. Lawyer Jim McNasby shares his DBS experience:

3. This is not the normal type of story that’s I draw attention to, but I have to say, the origami crane display at the World Parkinson Congress was beautiful, and a fantastic artistic contribution to the event:

Parkinson’s Exercise Programs in the News

Previous Week – June 2, 2019

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:

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:

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:

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:

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:

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:

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:

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:

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