Website News & Tidbits
YOUNG ONSET SUPPORT GROUP TO PARTNER WITH THE YOPN
YOUNG ONSET SUPPORT GROUP TO PARTNER WITH THE YOPN Moving forward, the Young Onset Support Group will be coordinated by Bill Moore (908) 370-2100; firstname.lastname@example.org When I was at the Parkinson’s Foundation Northeast Regional Summit in late June, Anna Grill, founder of the Young Onset Parkinson’s Network (YOPN) and I reached an agreement to merge our Young Onset Support Group with her already-established YOPN, thereby creating one larger group that would reach a much broader geographical area.
Moving Day New Jersey - October 8th
Moving Day New Jersey is on October 8th – There is just over two months remaining until Moving Day New Jersey. Have you started assembling your teams? If not, please register your team name and begin your fundraising! Let’s make beating Parkinson’s disease our priority between now and October 8th by beating last years efforts!
Parkinson’s Foundation Debuts New Website Design, Enhancing Customization and Accessibility
Parkinson’s Foundation Debuts New Website Design, Enhancing Customization and Accessibility NEW YORK & MIAMI (August 9, 2022) — The Parkinson’s Foundation announces the debut of the newly designed Parkinson.org, featuring a fresh look and array of innovations that improve user experience for the entire Parkinson’s disease (PD) community. Check the new website out at www.Parkinson.org
Parkinson's Events for August/September 2022
|In-person Support Groups||Details|
|JFK University Medical Center (ParkinSINGS)||7/31: Miles for Minds 5K – Roosevelt Park in Edison, NJ|
|Jersey Shore University Medical Ctr||8/11: Beyond the Diagnosis – Holiday Inn in Manahawkin, NJ|
|Ocean University Medical Center||8/17: Support Group|
|Riverview Medical Ctr||(2nd Tuesday, 2:00 PM)|
|No Affiliation||Social Event at Wall Municipal Bldg – See page 3|
|Thu 7/21 at 5 pm Newly Diagnosed Support Group||Your most Bothersome Symptoms https://us02web.zoom.us/j/2128260907|
|Mon 7/25 at 4 pm: Care Partners Support Group – Psychological Preparedness with PD with Gina Danner, PhD and Aly Chananie MS, CCC/SLP||https://us02web.zoom.us/j/2128260907|
|Sun 7/31 at 8:30 am: JFKUMC Johnson Rehab Institute Miles for Minds/5K and Walk & Roll||at Roosevelt Park, Edison, NJ|
|Tue 8/09 at 2 pm: Riverview Medical Center||Support Group – Topic TBD|
|Thu 8/11 at 7 pm: Jersey Shore UMC Parkinson’s Support Group – Beyond the Diagnosis at Holiday Inn||at 1 pm in Manahawkin, NJ|
|Mon 8/15 at 4 pm: What do we fear? Newly Diagnosed SupportGroup – Parkinson’s medications by Ilya Dubinsky, PharmD, BCPS||https://us02web.zoom.us/j/2128260907|
|Tue 8/16 at 7 pm: Young Onset Support Group – Therapeutic Options for Treating YOPD with Dr. Yassar Torres Yaghi, Neurologist and Director of Parkinsonism and Dementia Clinic||at Medstar Georgetown University|
|Wed 8/17 at 1 pm:||Ocean UMC Parkinson’s Support Group|
|Thu 8/18 at 5 pm: Newly Diagnosed Support Group: What do we fear?||https://us02web.zoom.us/j/2128260907|
|Mon 8/22 at 4 pm: Care Partners Support Group with Patrick Welch, USMC (retired)||https://us02web.zoom.us/j/2128260907|
|8/23: Young Onset Support Group||YOPN Community Member meeting|
|Mon 8/29 at 4 pm: DBS Support Group||https://us02web.zoom.us/j/2128260907|
|Thu 9/01 at 5 pm: Newly Diagnosed Support Group – What do we fear?||https://us02web.zoom.us/j/2128260907|
|9/01 – 10/11 at 7 pm: Young Onset Support Group – 3-part Nutrition Course with Dr. Laurie Mischley||https://yopnetwork.org/event-4673295|
|Tue 9/13: Riverview MC Parkinson’s Support Group at 2 pm|
|Tue 9/13 at 7 pm: Young Onset Support Group – Exciting Advances||in YOPD Genetic Research and Related Treatments with Dr. Jennifer Johnston, PhD|
|Thu 9/15 at 4 pm: Newly Diagnosed Support Group||https://us02web.zoom.us/j/2128260907|
|Mon 9/19 at 5 pm: Parkinson’s Support Group||https://us02web.zoom.us/j/2128260907|
|Wed 9/21: Ocean UMC Parkinson’s Support Group|
|Mon 9/26: Care Partners Support Group||https://us02web.zoom.us/j/2128260907 with Anna Grille of Young Onset Support Network|
|August 11th: Jersey Shore University Medical Center – Program||on August 11th, BEYOND THE DIAGNOSIS|
Can We Put the Brakes on Parkinson’s Disease Progression? by Dr. James Beck, Chief Scientific Officer, the Parkinson’s Foundation Click here for video https://www.youtube.com/watch?v=T-83IO5ybhg (Sent in by Eric Weinraub, PwP)
Another Research Opportunity
LSVT International is working with Google to intensify speech recognition with Google products. They are looking for 300 subjects to read phrases to computers. Click on attachment Google 2022 LSVT for more information. (Sent in by Jeffrey Cantor, PwP)
Welcome To The HMH/JFK Parkinson’s Advocate Website
Please visit our new website for all your immediate Parkinson’s needs. The website is rich in information about PD. We hope that it will soon become your “go-to” resource for PD-relatednews, research, support group meetings, articles and basic Information related to Parkinson’s disease.
New Parkinson’s Wellness Program
Opens at JFK Johnson Rehabilitation Institute, Click Here for details.
Get the Latest Parkinson’s News from HMH/JFK University Medical Center
All you need to do is go to the Home page, scroll down to Our Newsletter, and fill in the requested information. You will be placed on our mailing list and you will receive PDUpdates and Bulletins.
HMH/JFK’s Parkinson’s Disease Center
Located in Edison, New Jersey, the JFK Parkinson’s Disease Center is comprised of the JFK Neuroscience Institute and the JFK Johnson Rehabilitation Institute. Both Institutes are uniquely qualified to offer comprehensive services in a single location and work collaboratively to accurately diagnose PD and to create a care plan for each individual patient.
Did You Know?
1. People with Parkinson’s need to hydrate themselves more frequently than those without PD?
Find Out Why at: https://www.neurologysolutions.com/parkinsons-disease/dehydration-inparkinsons-risks-tips-2/
2. The cause of Parkinson’s is still unknown and there is no cure. What causes Parkinson’s remains largely unknown. Genetics cause about 10 to 15 percent of all Parkinson’s. The other 85 to 90 percent of cases are classified as sporadic (or occasional). Although there is no cure, treatment options vary and include medications and surgery.
3. No two people have the same exact symptoms. The progression of symptoms is often a bit different from one person to another due to the diversity of the disease. People with PD may experience: tremor (mainly at rest); slowness of movements (bradykinesia); limb rigidity; gait and balance problems.
4. Small Handwriting and loss of smell are early signs of Parkinson’s. A change in handwriting, specifically handwriting that’s gotten smaller over time or crowded, are an early indicator of PD. Another common early sign is the loss of smell of foods like bananas, dill pickles and licorice.
5. The Parkinson’s community is strong. The Parkinson’s Foundation is here for our global Parkinson’s community — that includes family members and caregivers. The Foundation hosts Moving Day walks across the nation and also provides additional ways to get involved — donate, volunteer, host a fundraiser, join PD Conversations or advocate.
If you answered four out of five questions correctly, you are qualified to be a Parkinson’s Mentor. There are many Newly Diagnosed PwPs that can really use your advice and friendship! Contact John Kolaya or Donna Mastropolo and join our Newly Diagnosed Group
Welcome To... ADA COMPLIANCE
The little stick figure inside the circle on the lower left of each website page is our new Accessibility Menu. Click on it and you will see various icons representing what you can turn on to visually enhance the page. Our website is on the way to becoming Level 3 compliant with the American Disabilities Act!
Do You Pay A Premium Price For Rytary?
One of our PwPs has received a significant reduction in the high cost of the Extended release formulary for Carbidopa/Levidopa, commonly known as Rytary. His neurologist simply wrote a letter to the insurance company and requested the reduction and it was granted. The letter was worded accordingly: To whom it may concern: My patient, Peter Parkinson’s (DOB: 01/01/1950) has Parkinson’s disease and has been doing very well on Rytary for the past 3 years (since 2018). He has advancing Parkinson’s disease and it is critical that he maintains this medication regimen to ensure stability and optimal functionality. The medication cost without insurance coverage is prohibitively expensive and unreasonable. Therefore, it is imperative that you cover this medication cost immediately to avoid any lapse or worsening in his condition. if you have any questions, please call me at 732-xxx-xxxx. Sincerely,
Drumming for Parkinson's
At a previous Parkinson’s (PwP) Support Group, Dave Miller of EarthMovers Drum Collective taught us about the value of rhythmic drumming for relieving the stress that comes with PD. As indicated, he leaves us with a few YouTube drum lessons:
- DRUM‐PD: The Use of a Drum Circle to Improve the Symptoms and Signs of Parkinson’s Disease (PD) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4914050/
- Riding the Wave with Dounoun Frenzy at Malcolm X Park May 2nd 2021 https://youtu.be/L4L3vegr7EU
- Bolokada Conde and Moussa Drame part 2 of the Sawah African Drum & Dance https://youtu.be/yjIx7DS7Cms
Check out these drum circles to get a taste for what a circle of drums really sound like.
Coming Soon on the HMH/JFK Parkinson’s Website
• PD does not DEFINE us – The “Get to Know Us” Section of the website is ready and waiting to contain information about YOU! Send us your name, the town you live in and tell us your volunteering pursuits, interesting hobby, little known fact or accomplishment that makes you proud and keeps you sane!
• Completion of the Index (Under Construction)
• Glossary of PD terms (Under Construction)
• More Doctors’ Corner Articles
• Parkinson’s Advocate of the Month
• ASK the DOC
• Website correspondents
• What would you like to see on the website? – Contact us with your ideas and
MJFF Survey Results: People with Parkinson’s Share Experiences with Cannabis
Many people are curious as to how cannabis can help with PD symptoms. Clearly clinical trials have not yet proven safety or benefit. Patients and their doctors are trying to figure out what works best in the real
To learn how people use cannabis for Parkinson’s, researchers conducted a survey through The Michael J. Fox Foundation’s (MJFF) online platform, Fox Insight. Samantha Holden, MD, MS, and colleagues at the University of Colorado in Aurora, Colorado, asked people what type of cannabis they take, including the amounts of cannabidiol (CBD) and tetrahydrocannabinol (THC). They also asked how often people use cannabis, how long they’d been taking it, which symptoms, showed that, among survey participants:
- More than 70 percent of people use cannabis. The most common way is by mouth, once a day.
- About 13 percent of people did not know what type of cannabis they were taking. Among those who did, nearly half took higher CBD formulations and 15 percent took similar amounts of CBD and THC.
- Many reported small improvements in pain, anxiety, agitation or sleep.
- The most common side effects include dry mouth, dizziness, and memory and thinking (cognitive) changes. People taking higher THC reported more side effects but also more benefit.
- Thirty percent of people did not inform their doctor about cannabis use.
Researchers hope that these results help doctors to more effectively counsel people with Parkinson’s about cannabis. They also hope the results support the design of future clinical study.
Critical advance announced in imaging the living Parkinson’s brain
Misfolding and clumping of the alpha-synuclein protein in brain and body cells is the pathological hallmark of Parkinson’s disease. Scientists believe this toxic dysfunction gives rise to Parkinson’s onset and progression. The ability to visualize alpha-synuclein activity in the living brain would be a game-changer for testing and developing potential new Parkinson’s drugs. (Similar strategies in Alzheimer’s have had a major effect on accelerating drug development for that disease.)
Now AC Immune, a Swiss biotechnology company, has shared the first images of alpha-synuclein in the living human brain. They’ve achieved this major step forward working in individuals living with multiple system atrophy (MSA) — a related parkinsonism that, like Parkinson’s, is characterized by misfolding and clumping of alpha-synuclein in the brain. In its press release, the company said their PET (positron emission tomography) tracer can differentiate people with MSA from control volunteers, people with Parkinson’s disease and people with Lewy body dementia
If validated, AC Immune’s tracer should be a powerful steppingstone toward the critical tracer tool for alpha-synuclein in Parkinson’s disease patients.
Replacing Dopamine with Stem Cells and Brain Cells
The promise of stem cells comes from their ability to transform into other kinds of cells. Parkinson’s researchers are creating dopamine cells to replace those that are lost in the disease. This cell replacement could help ease some of the symptoms of the disease linked to dopamine loss, mainly the movement issues.
Implanting Dopamine Cells Made from Stem Cells
Recently The Michael J. Fox Foundation (MJFF) awarded $3 million to scientists at Arizona State University for a trial to implant dopamine cells made from stem cells into brains of people with Parkinson’s and a PRKN mutation. In less scientific terms:
What: Dopamine cells created from induced pluripotent stem cells. This type of stem cell is created in a laboratory from a skin or blood sample. Then scientists engineer the stem cell into a dopamine cell.
Where: Implanted into part of the brain where dopamine cells are lost in Parkinson’s.
Who: Eight people with Parkinson’s and a rare mutation in the PRKN gene. These variants are most associated with young-onset Parkinson’s disease.
Why: This population does not have some of the other pathology seen in the disease (such as clumps of alpha-synuclein protein). That means it may be easier to see an effect of the dopamine cell transplant in these individuals.
When: The grant is supporting preparation for the trial, which may begin in about a year.
Jeffrey H. Kordower, PhD, principal investigator of the study, shared, “This study will make a great impact in treatment of patients with Parkinson’s. I think the future looks incredibly bright, and I couldn’t be more excited.”