PARKIES COME TOGETHER
A brief synopsis of topics touched upon at our meetings. Please discuss with your neurologist, movement disorder specialist, or GP before trying anything mentioned below.
A good turnout at this meeting.
There was discussion regarding Rytary and Sinemet. Most in the group take Sinemet while a couple are on Rytary.
Here's a link that provides information on these two medications.
We then spent some time talking about dysphagia. A few people in the group use straws when drinking. One person worked with a therapist when completing the LSVT LOUD program. He showed us some of the exercises he did and many can be found at American Parkinson Disease Association's website.
I then told the group that a new class would be starting up in October. The class will encompass big movements, deep breathing, exercises to maintain and strengthen the muscles used in swallowing, fun cognitive group activities, dance and stretching. The class will be called Movement Through Music. It will be free for the entire month of October as I experiment and try different things while figuring out which activities work best and how to structure the class. This is the same approach I took while developing my fitness and boxing program. The Movement Through Music class aims to be a fun way to get your body swaying, reaching, moving forwards, backwards and to the side, conducting to music using big movements, and trying to get those facial muscles working, too. Listening to music is an amazing way to move your body in all planes of motion.
May 2021 - Great to gather together again!
We talked about a wrist device for hand tremor(s) from Cala Trio.
In a previous meeting, there was discussion about stem cell treatment for Parkinson's. We wondered if anyone had heard any recent news about this. The following clinical trial will soon begin.
There are some acupuncturists that specialize in neurological disorders. In the San Jose area, Dr. Zhu is well-regarded and works with those that have PD.
We touched upon dopamine pumps, but no one had much information on it. Duopa is available, although nobody said their doctor ever suggested using it. It appears that it's an option for those in later stages of Parkinson's.
Lots of blogs out there, here are two that were shared.
And this one is written by an ex Biology professor who reviews medical studies papers.
March 2020 - due to coronavirus we had an online meeting
We often talk about mindfulness during class. Here's an online mindfulness workshop through Parkinson Society British Columbia that starts
March 23. Be aware that this is an ongoing series (not a one time webinar).
Ask the Expert Webinar: Medical Cannabis and Parkinson's - this is through Parkinson Society British Columbia, too.
Parkinson's Foundation webinar, March 17th, on Food, Water and Supplements: Does Nutrition Play a Role in PD Symptoms or Progression?
Concerned about Coronavirus? There will be a Fox Foundation webinar on March 19th, Information on Coronavirus for the Parkinson's Community.
Jean is participating in a Cala Health study that is recruiting people to test a device to provide symptomatic relief of hand tremors.
If you are interested, please phone: 650.651.5296, or send an email to Anchal@calahealth.com.
Interested in participating in a clinical trial? Go to NIH U.S.National Library of Medicine to learn and sign up for upcoming and current PD clinical trials.
If you are interested in reading and understanding analysis of ongoing PD clinical trials and observational studies throughout the world, go to PD Tracker.
Parkinson Voice Project 's 2020 online lectures can be found at this website.
A couple of people in the group shared the same article about how the probiotic, Bacillus subtilis, might be able to clear some
alpha-synuclein clumps and improve motor symptoms (e.g. tremor).
There are Parkinson's specific retreats and one person in the group will be attending the PWR! Retreat in Arizona.
Most people at Parkies Punch Back are familiar with Dr. Laurie Mischley. She is part of a week-long Parkinson's retreat (summer school) in Washington at Bastyr University. The event will provide strategies and tips to improve the lives of those with PD.
Jean spoke about her overwhelmingly positive experience at Vortex Physical Therapy and Balance. They have therapists that specifically work with people with Parkinson's. Jean has seen improvement with her balance. Another in our group is going to Vortex, too, and she is very impressed with their program.
Ray shared an article on a drug used to treat enlarged prostate, Terazosin, that may be able to slow the progression of PD.
We also talked about intermittent fasting and brain health. David is trying out intermittent fasting, and so far he likes the fact that he has lost weight!
I found a TEDx Talk given by Mark Mattson, a professor of Neuroscience in the Johns Hopkins School of Medicine and chief of the Laboratory of Neurosciences at the National Institute of Aging. He explains how fasting bolsters brain power.
Thanks to everyone that attended the meeting - the largest turnout yet!
We discussed Laurie Mischley's presentation, from June 2018, that is available on YouTube.
Key points from the presentation:
* Daily exercise - intense, requires concentration.
* Social - join groups.
* Sleep - go to bed early and start your day with a brisk walk.
* Plant-based diet.
* Encourage: fresh veggies, fruits, nuts and seeds, fish, olive or coconut oil, wine, spices.
*Avoid: red meat, dairy, soda, fried foods, canned fruits and veggies.
*Individualized plan for supplements - fish oil, CoQ 10, glutathione, vitamin D, B-vitamins, melatonin.
Dr. Mischley spoke about how alpha-synuclein is a misfolded protein that was discovered in 2017. This protein comes about due to intestinal inflammation - this is why scientists now state that PD starts in the gut and makes it way to the brain.
Discomfort/going outside your comfort zone, exploration of your surroundings, curve balls in your regular routine are all good; you want to nurture neuroplasticity. (That's why we love the neurobic element in Parkies Punch Back classes!)
Also, I shared with the group an article from Stanford Medical News Center.
The article states that scientists at Stanford University School of Medicine have discovered a molecular defect that seems to be universal to those that have Parkinson's. The hope is that this will provide a means of detecting PD even before symptoms may start.
Discussion held about Azilect (rasagiline), a monoamine oxidase-B (MAO-B) inhibitor that can be used to treat symptoms of Parkinson's. Azilect and levodopa are often prescribed together. In the brain, MAO-B plays an important role in the breakdown of neurotransmitters (chemical messengers) like dopamine. MAO inhibitors (MAOI) block the action of the enzyme. (An enzyme acts as a catalyst to bring about a specific biochemical reaction.)
Azilect can help in decreasing the "off" time someone may experience between doses of levodopa
Bryan completed the LSVT (Lee Silverman Voice Treatment) LOUD speech therapy program. He feels it helped, and his wife agreed, too, and he is back to singing in a choir!
LSVT- LOUD is designed to improve vocal strength and loudness, as well as dysarthria. Dysarthria often is characterized by slurred or slow speech that can be difficult to understand. It is considered a speech disorder and it is caused by muscle weakness.
There is also a SPEAK OUT! program. This speech therapy program focuses on the concept of intent. SPEAK OUT! strengthens the muscles used for speaking and swallowing and places emphasis on speaking with intent and converting speech from an automatic function to an intentional act.
Here's a link to Speech Spark that has information on the two programs.
One person in the group is trying near infrared light therapy. She doesn't know if it's the two supplements she's taking, the infrared light therapy or a combination, but her tremor has decreased. Supplements and treatment include:
1. L-Serine, an amino acid that may help with motor symptoms of PD.
3. Infrared light therapy.
Found this article on light therapy and Parkinson’s.
People that have Parkinson’s have a greater incidence of melanoma.
Here’s an article from the American Parkinson Disease Association on PD and cancer.
N-acetyl-cysteine may improve dopamine function. David will start taking this supplement and report back to us if he feels it's effective.
Here’s the article that he and Gwen shared with the group.
Free caregiver and patient event for Parkinson’s in Mountain View in July.
Tai Chi classes at local community centers. At the Camden Community Center they have an instructor that works with beginners, so give it a go if interested. These classes are not Parkinson’s specific.
Stanford’s Neuroscience Supportive Care Program offers PD programs.
And, if interested, check out Dr. Pamela King’s video synapses of the Parkinson’s Congress in Japan.
Ray shared an article concerning gut bacteria and PD. It is a bit heavy on scientific terms, though.
This short article I found, from 2016, suggests a link between bacteria in the gut and how it can be the start of Parkinson’s.
David and Gwen told the group about two websites they regularly check for news regarding PD.
https://parkinsonsnewstoday.com - you can sign up for weekly updates.
https://parkinsonvoiceproject.org - 90% of people with Parkinson’s are at risk of developing a weak voice that can lead to serious speech and swallowing difficulties. Parkinson Voice Project's speech therapy program addresses these issues.
Ray has been checking out another website that informs about research being conducted on Parkinson's.
There's also a Stanford resource page called Parkinson's Community Outreach.
Could the supplement CO Q10 help some people with their PD symptoms? Dr. Perlmutter, a neurologist and author of Grain Brain, gives a brief explanation on the importance of taking CO Q10. Perhaps worth discussing with your doctor?
Parkinson’s Foundation Moving Day walk is on June 1st
Join the Parkies Punch Back team and/or donate. Tell your friends and family about it - send them the link!
Steve shared a link from the VA regarding relaxation. Five different recordings ranging in length from nine to 20 minutes.
Relaxation has been shown to help lower anxiety and stress as well as improve sleep, mood and overall health and well-being. Practicing relaxation can help you better deal with the everyday stresses of life, cope with health conditions such as pain, high blood pressure, diabetes, and improve your energy and mood.
Ray attended a Parkinson's event in Santa Cruz and told the group that one of the many topics discussed that day concerned wearables and Apps for those with PD.
The Kyoto International Conference Center will host the 5th World Parkinson's Congress from June 4-7, 2019. The event will offer an international and interdisciplinary forum for all who are researching, treating, or living with PD.
Sandy shared how Dr. Terry Wahls reversed her MS with diet - mitochondria health is the key to this diet. Can this diet help those with PD? If interested, there is a YouTube Ted Talk on it (Minding your Mitochondria) available for anyone wanting to try the diet.
I spoke about a really good lecture on PD that covers current medications, importance of taking medications on a consistent basis, sleep, gut issues, orthostatic hypotension, exercise (neuroplasticity and HITT - both of which my classes incorporate), dyskinesia and much more.
Jean shared an article on dopamine replacement therapy. The hope is to obtain FDA approval to start a small clinical trail to test cells in PD patients. No exact time when that trial will start, but the hope was either 2019 or 2020. That piqued everyone's interest at the meeting!
And finally, I mentioned that Pacific Neuroscience Institute's new center, Pacific Brain Health Center, opened in Santa Monica last year. You can put your name down in their database for future PD clinical trials.
We spoke about current PD drugs on the market. One person said she changed from Sinemet to Rytary and it has helped a lot - it just works better for her.
A UK-based social network that covers various health issues called healthunlocked.com was talked about. Type in Parkinson's and hear from other folks on how they are dealing with their issues.
Sandy brought the current book she is reading, Natural Therapies for Parkinson's Disease, by Dr. Laurie K. Mischley.
This was our first gathering and it was a chance for everyone to meet and introduce themselves.
David shared an article, World-first pill may stop Parkinson's.
Here is the Fox Foundation's response to that article:
The Science: Targeting Inflammation to Stop Parkinson's
Researchers at The University of Queensland, in partnership with biotech Inflazome Ltd., recently announced positive findings from pre-clinical testing of a novel therapy to slow or stop Parkinson's progression. A once-daily, oral medication that lessens brain inflammation acted to decrease brain cell loss, increase levels of dopamine and improve movement symptoms. The Michael J. Fox Foundation, with partner Shake It Up Australia Foundation, provided funding for the study. The next step is human testing, in which a therapy goes through a rigorous (and lengthy) process to determine whether it is safe, tolerable and efficacious.
The Hype: Overpromising on Early Research
The results do look promising, but the author hypes the science with a sensational title and broad conclusions. Because this is pre-clinical data, the therapy needs to go through several steps (and many years) of testing before it may be ready and valid for human use. (Unfortunately, clinical trials are the steps at which many therapies fail.) The Michael J. Fox Foundation is enthusiastic about new targets and positive results. But it's disappointing when the media plays on patients' and families' hopes