March 3, 2019 – Parkinson’s Weekly Update

Non-scientific rendering of brain tubes

This is a recap of the most interesting news and discussions relating to Parkinson’s Disease this past week.

There was a lot of talk last week about the results of the Parkinson’s Disease trial in the UK involving a surgery that implanted tubes in patients’ heads that could be used post-surgery to deliver GDNF and would hopefully regenerate dying dopamine brain cells. On, the other side of the pond, the FDA is allowing a Fecal Microbiota Transplantation (yes, we’re talking about poop transplants) study to include Parkinson’s. Meanwhile in California, a stem cell PD trial moves closer to FDA approval. And concern for caregivers, as a study reports that wives who take care of husbands with Parkinson’s Disease have greater impairments in their own stability. Then, we remembered that our primary focus was supposed to be exercise for Parkinson’s, so we discussed tremors while exercising and the benefits of using a heart rate monitor when exercising.

  1. Let’s start with the brain tubes. A surgery 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 was a bit more enthusiastic, titled “New Treatment Offers Potentially Promising Results for the Possibility of Slowing, Stopping, or Even Reversing Parkinson’s Disease”. The optimism is related to brain scans showing what the researchers perceive as improvements. They are proposing further study and tests of higher doses. Additional time might also be required for the treatment to have a more quantifiable effect. The fact that this surgery and drug delivery method was found to be safe is also very encouraging. It is extremely difficult for drugs to be able to cross the blood brain barrier, so this process opens up possibilities for further study.  We’ve got links to more detailed information here: https://parkinson.fit/forums/topic/the-uk-study-that-surgically-implanted-brain-tubes-to-test-a-treatment-gdnf/
  2. Here in the US, many are not very familiar with Cure Parkinson’s Trust (CPT), the organization behind the GDNF trial. Tom Isaacs, co-founder of CPT, was a participant in the study, and passed away during the study. Tom was diagnosed with Parkinson’s disease at the age of 27 in 1996 and co-founded The Cure Parkinson’s Trust in 2005. He passed away in 2017. In addition to leading CPT, Tom’s outsized personality encouraged us all to live well with Parkinson’s Disease. If you’re not familiar with the backstory, we highlight a video that tells the story, along with a couple of videos of Tom singing about PD and reminding us to smile, laugh, and make time to continue to enjoy life with PD:  https://parkinson.fit/forums/topic/the-uk-study-that-surgically-implanted-brain-tubes-to-test-a-treatment-gdnf/#post-99833
  3. 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. 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 pill form (often orally, but sometimes via the back channel). As the pathogenesis of Parkinson’s Disease is still unknown, there are many questions as to whether this treatment would have any effect on PD. Studies on PD mice have been very interesting, and while this sounds crazy, I immediately contacted them to inquire about the trial, but the candidates are already in place. More details here: https://parkinson.fit/forums/topic/fda-allows-fecal-microbiota-transplantation-fmt-study-to-include-parkinsons/
  4. Stem cells are another promising treatment avenue for PD. Jennifer Raub is president of the Summit for Stem Cell Foundation, a nonprofit created to support the use of stem cells to treat Parkinson’s. She’s expecting to be part of a 10 patient clinical trial awaiting FDA approval in Dr. Jeanne Loring’s Torrey Pines lab. Here’s a local San Diego TV report with more details: https://www.10news.com/news/local-news/breakthrough-clinical-trial-could-reverse-symptoms-of-parkinsons-disease
  5. Speaking of stem cells, it’s probably better to wait for an actual clinical trial. The Washington Post reports that over the past year, at least 17 people have been hospitalized after being injected with products made from umbilical cord blood, a little-known but fast-growing segment of the booming stem cell industry. Sold as a miracle cure for a variety of in­trac­table conditions, the injections have sickened people in five states, prompting new warnings from health officials about the risks of unproven stem cell treatments. Read more in the Washington Post: https://www.washingtonpost.com/national/health-science/miraculous-stem-cell-therapy-has-sickened-people-in-five-states/2019/02/26/c04b23a4-3539-11e9-854a-7a14d7fec96a_story.html
  6. A review article in the  Parkinsonism & Related Disorders Journal points out that mobility deficits, including gait disturbance, balance impairments and falls, respond poorly to dopaminergic medications, indicating a role for additional neurotransmitters, such as acetylcholine. CDP Choline (citocoline) is a precursor to acetylcholine, and has long been considered as potential complimentary therapy for PD. We looked at some of these studies and wondered why it is not more commonly considered: https://parkinson.fit/forums/topic/beyond-dopamine-for-pd-gait-disturbances-balance-issues-and-falls-cdp-choline/
  7. A study in Poland noted that wives who take care of husbands with Parkinson’s Disease have greater impairments in their stability while standing than housewives or more active women of the same age. Parkinson’s patients require permanent care as their movements are unstable and slow. Their caregivers’ own stability may be affected, especially if the patient’s postural balance in impaired, and there’s an increased risk for falls. Parkinson’s News Today offers more explanation: https://parkinsonsnewstoday.com/2019/02/27/wives-of-parkinsons-patients-are-more-impaired-in-postural-stability-from-caretaking-study-finds/
  8. Finally, exercise for Parkinson’s Disease…What if my PD tremors are worse when I exercise? https://parkinson.fit/groups/rock-steady-boxing-hilton-head/forum/topic/what-if-my-pd-tremors-are-worse-when-i-exercise/ and Tracking Parkinson’s Disease Exercise Progress with a Heart Rate Monitor https://parkinson.fit/forums/topic/tracking-parkinsons-disease-exercise-progress-with-a-heart-rate-monitor/
  9. And on the human interest side, an interesting story 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. 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. More details in this local TV report: https://parkinson.fit/forums/topic/parkinsons-patient-walks-after-18-years-in-a-wheelchair/

Previous Week – February 25, 2019