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.

September 2019

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.

 

https://www.youtube.com/watch?v=FHb2b-joVko

Key points from the presentation:

* Daily exercise - intense, requires concentration.

* Social - join groups.

* Mindfulness

* 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.  

http://med.stanford.edu/news/all-news/2019/09/scientists-find-potential-diagnostic-tool-treatment.html

August 2019 

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.

https://www.speechspark.com/blog/lsvt-vs-speakout

June 2019

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.

2. CoQ10

3. Infrared light therapy.

Found this article on light therapy and Parkinson’s.

https://parkinsonsdisease.net/news/light-therapy-tool-managing-pd/

 

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.

https://www.apdaparkinson.org/article/cancer-and-parkinsons-disease/

 

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.

https://parkinsonsnewstoday.com/2019/06/20/dietary-supplement-eases-parkinsons-symptoms-improves-dopamine-function-study-shows/

 

Free caregiver and patient event for Parkinson’s in Mountain View in July. 

https://www.eventbrite.com/e/caregiver-and-patient-educational-seminar-tickets-62233457948?aff=ebdssbdestsearch

 

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.

https://apm.activecommunities.com/sanjoseparksandrec/Activity_Search?detailskeyword=&IsAdvanced=False&ddlSortBy=Activity+name&ActivityOtherCategoryID=4&DaysOfWeek=0000000&SearchFor=2&SearchLevelID=0&maxAge=100&NumberOfItems

 

Stanford’s  Neuroscience Supportive Care Program offers PD programs.

https://stanfordhealthcare.org/for-patients-visitors/neuroscience-supportive-care-program.html?ecid=nscp-olm-na-prnt-all-fulpg-Jan17-na

 

And, if interested, check out Dr. Pamela King’s video synapses of the Parkinson’s Congress in Japan.

https://m.youtube.com/watch?v=ObL0otNHBU8

 

Ray shared an article concerning gut bacteria and PD. It is a bit heavy on scientific terms, though.

https://science.sciencemag.org/content/364/6445/eaau6323

 

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.

https://www.cureparkinsons.org.uk/news/parkinsons-starts-in-gut

April 2019

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.

https://scienceofparkinsons.com 

There's also a Stanford resource page called Parkinson's Community Outreach.        

http://parkinsons.stanford.edu/exercise.html

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?

https://www.drperlmutter.com/treat-parkinsons-disease/

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!

https://movingdaywalk.org/event/moving-day-san-jose/

March 2019

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.

https://www.columbiamo.va.gov/services/relaxation_recordings.asp

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.

https://glneurotech.com/kinesia/products/kinesia-360/pd-wearables-apps/

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.

https://wpc2019.org/

January 2019

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.

https://www.youtube.com/watch?v=KLjgBLwH3Wc

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. 

https://www.youtube.com/watch?v=-m4xJtrup8k&t=2422s

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.

https://www.pacificneuroscienceinstitute.org/brain-health/

December 2018

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. 

https://healthunlocked.com/

Sandy brought the current book she is reading, Natural Therapies for Parkinson's Disease, by Dr. Laurie K. Mischley.

November 2018 

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

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