The UK study that surgically implanted brain tubes to test a PD treatment (GDNF)

The UK study that surgically implanted brain tubes to test a PD treatment (GDNF)

There’s a lot of talk this week about the Parkinson’s Disease trial in the UK involving a surgery that implanted tubes in patients’ heads (behind the ear) that could be used post-surgery to deliver GDNF (Glial Cell Line Derived Neurotrophic Factor) to the brain. The hope was that this would regenerate dying dopamine brain cells in patients with Parkinson's and reverse their condition. Technically, the study failed to meet its goals. But the press release that came out of the study is a bit more enthusiastic, titled  “New Treatment Offers Potentially Promising Results for the Possibility of Slowing, Stopping, or ...
FDA allows Fecal Microbiota Transplantation (FMT) study to include Parkinson’s

FDA allows Fecal Microbiota Transplantation (FMT) study to include Parkinson’s

Local TV news station KHOU (channel 11) in Houston is reporting that the FDA has given the green light to expand a Fecal Microbiota Transplantation (FMT) study at UTHealth to include Parkinson’s. https://www.khou.com/article/news/health/doctors-use-human-feces-to-treat-deadly-disease/285-86b1359c-51c4-4d12-b428-0cfa84215b1a The study is being performed at the Kelsey Research Foundation UTHealth Center for Microbiome Research in Houston, Texas. The idea behind FMT is that good bacteria in healthy stool samples is transferred to an unhealthy individual to repair whatever is going wrong in the gut. In a UTHealth lab, the stool samples are mixed with saline, filtered twice, freeze dried, then put in capsules. The basic transplant takes place in ...
Parkinson’s patient walks after 18 years in a wheelchair

Parkinson’s patient walks after 18 years in a wheelchair

An interesting story in the news today about a hospice patient with PD in Arizona who surprised his caregivers by getting out of his wheelchair after relying on it for 18 years. https://www.azfamily.com/news/parkinson-s-patient-in-casa-grande-walks-after-years-in/article_b210c798-3a30-11e9-881c-87ce6878b607.html The facility had been experimenting with “Sign Chi Do” for the last three weeks, a movement therapy that uses sign gestures, music and uplifting expressions ...
Beyond l-dopa for PD gait disturbances, balance issues and falls - CDP Choline?

Beyond l-dopa for PD gait disturbances, balance issues and falls – CDP Choline?

A study published this week raises an interesting point: Mobility deficits, including gait disturbance, balance impairments and falls, are common features of Parkinson's disease (PD) that negatively impact quality of life. Mobility deficits respond poorly to dopaminergic medications, indicating a role for additional neurotransmitters. Due to the critical role of cortical input to gait and balance, acetylcholine-an essential neurotransmitter system for attention-has become an area of interest for mobility. Overview of the cholinergic contribution to gait, balance and falls in Parkinson's disease I find this interesting, because the first Movement Disorder Specialist that I met with to confirm my Parknson’s ...
February 25, 2019 - Parkinson's Weekly Update

February 25, 2019 – Parkinson’s Weekly Update

This is a recap of the most interesting news and discussions relating to Parkinson's Disease this past week. We saw people with Parkinson's in Tasmania (Australia) turning heads with the latest Parkinson's Disease fashion trend, wearing red light buckets on their heads. They say it helps improve their symptoms. We saw study results that told us that while research on the gut bacteria/PD connection continues, we should also be aware that gut bacteria can interfere with levodopa treatment. Rock and roll legend Peter Frampton was diagnosed with Inclusion Body Myositis, a rare disease that based on some of the symptoms, ...
Gut bacteria can interfere with the effectiveness of levodopa (Sinemet)

Gut bacteria can interfere with the effectiveness of levodopa (Sinemet)

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, a recent study highlights the obvious impact that differences between our unique individual microbiomes can have on how we experience PD in our daily lives. Side note: If you are curious about this research, one of the more useful updates that I recently added to this website is the ability to search recent news items related to Parkinson's ...
Peter Frampton - What is Inclusion Body Myositis?

Peter Frampton – What is Inclusion Body Myositis?

In the 5 years since I was diagnosed with Parkinson’s Disease, there are a few things I’ve learned. PD symptoms vary significantly from individual to individual. The speed of progression of PD varies significantly. There is no medical biomarker for PD. Most diagnosis are strictly based on observation of symptoms. The reality is that what we call PD is most likely a dozen or more different diseases and/or syndromes. On that note, I dedicate this forum to “what else might it be”...conditions that might be misdiagnosed as Parkinson's Disease. About eight years ago, Peter Frampton started to notice that his ...
What if my PD tremors are worse when I exercise?

What if my PD tremors are worse when I exercise?

This question was asked in class last week. Our instructor indicated that this was normal, and nothing to be concerned about. However, I thought it might be helpful to explore this issue in a little more depth. Dr. Rachel Dolhun, a VP of the Michael J. Fox Foundation, states: "People with Parkinson's may notice that some symptoms such as tremor increase during exercise, but this doesn't mean tremor will worsen over the long run." Source: https://www.michaeljfox.org/foundation/news-detail.php?exercise-and-parkinson-frequently-asked-questions That's reassuring...but there is another point worth mentioning. It is actually quite normal for people who do not have Parkinson's to experience muscle shaking and ...
Tracking Parkinson's Disease Exercise Progress with a Heart Rate Monitor

Tracking Parkinson’s Disease Exercise Progress with a Heart Rate Monitor

Looking back on 5 years of intense exercise since my Parkinson's diagnosis in 2014, I'm glad that my personal trainer convinced me to start wearing a heart rate monitor about 2 years ago. The greatest benefit is that it keeps me motivated and focused on meeting my exercise goals. The MyZone system awards points (called MEPs) for every minute spent in the various exercise intensity zones. These zones correspond to percentage of maximum heart rate. Exercise intensity and maximum heart rate is discussed in more detail here: http://parkinson.fit/how-much-should-i-exercise-for-pd/ If you have PD, with no other limiting health conditions, and have ...
Honda Walking Assist receives MJFF grant to assist mobility in people with PD

Honda Walking Assist receives MJFF grant to assist mobility in people with PD

Last week, Honda announced today that they were awarded a grant by The Michael J. Fox Foundation (MJFF) to research the safety and potential positive impact that Honda's Walking Assist Device could have in helping people with Parkinson's disease (PD). Honda has partnered with Ohio State University conduct a Phase II randomized controlled trial to study the impact of an eight week intervention using the Walking Assist Device to improve mobility in people with PD. Press release: https://www.prnewswire.com/news-releases/honda-rd-americas-collaborates-with-the-ohio-state-university-and-the-michael-j-fox-foundation-to-research-walking-assist-device-efficacy-in-people-with-parkinsons-disease-300789381.html Clinical trial details: https://clinicaltrials.gov/ct2/show/NCT03751371 “Honda Walking Assist” is a training device that efficiently supports walking which is based on the inverted pendulum ...
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Book: "The Brain's Way of Healing" by Norman Doidge

Book: “The Brain’s Way of Healing” by Norman Doidge

Hank sent an email to our Rock Steady Boxing class recently about the book "The Brain's Way of Healing" by Norman Doidge. It's been a few years since I read this book, but from a PD perspective, chapter 2 is the most interesting, because it is the story of a man who used exercise (primarily fast walking) and conscious control of his movements to significantly reverse his PD symptoms. I thought I'd share a little additional background, as this is one of the stories that fascinated me when I learned about it shortly after being diagnosed with PD. The man ...