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 https://www.medicalnewstoday.com/articles/324418.php)

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: http://parkinson.fit/forums/topic/gut-bacteria-can-interfere-with-the-effectiveness-of-levodopa-sinemet/

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 https://yourmove.fitness.

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:

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

2 thoughts on “June 16, 2019 – Parkinson’s Weekly Update”

  1. Brett,

    Wow! I’m beyond grateful. You took so much time to understand this cause. Thank you for the attention you gave it and your awareness to convey it to your trusted, and trusting, audience. I’ve been awed in the past at the amount of time you invest in Parkinson’s Fit. You are also a constant positive light within our PD community. It’s such a pleasure to have connected. Some folks in Uganda are going to think very highly of you now as well!

  2. My name is Hannington Kabugo who met Gavin. I want to thank Parkinsons Fit for the message about PD in Uganda and Africa as a whole thank you very much for your gold heart

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