American Parkinson’s Disease Association (APDA)
Virginia Education Day – September 28, 2019
These are my notes from the third session which featured an Update on Research and Benefits. I’m sorry they’re so brief, but I’m not that confident explaining clinical information, so feel free to Google the key words and you’ll find lots more information.
Wearable technology can help people with gait and freezing. When it detects that the wearer is freezing, it can give an auditory signal to prompt the person to resume walking.
When experiencing anxiety, try focused breathing. One example is to inhale slowly and deeply through your nose (smell the flower), then exhale slowly with your lips pursed slightly (blow out the candle). It was about this time that my friend, sitting next to me, told me that she is finding a weighted blanket helpful.
Eye tracking is being trialed to diagnose Parkinson’s.
Virtual reality offers benefits with walking and physical therapy.
Studies are looking at the impact of inflammation on the gut and how it affects Parkinson’s.
There is research into early biomarkers as well as genetic markets for early diagnosis.
The Michael J Fox Foundation is trialing Repetitive Transcranial Magnetic Stimulation (rTMS).
Stem cell transplant has not been approved in USA and only improves symptoms – it is not a cure.
With regards to CBD oil, studies are weak because potential side effects are similar to what people with Parkinson’s are already living with – e.g. fatigue.
For more information on trials check out:
www.ClinicalTrials.gov and MJFF Fox Trial Finder
Bob Pearson, a local Parkinson advocate from Northern Virginia, spoke about Parkinson’s research. He told us how when you participate in research it’s like the old man who plants the tree even though he’ll never sit in it’s shade. You may not benefit directly but you may help others. It costs about $50,000 a year to treat a person with Parkinson’s with only about $200/person a year spent on research. Human volunteers are needed for studies – a lack of volunteers slows the chance for a cure. Bob advised us that we should never pay to be in a research trial because it’s not ethical.
If you’re adverse to participating in a trial involving medications or therapies, Michael J Fox Foundation offers observational studies – no medications or therapies involved. More information at www.michaeljfox.org/join-study. I’d also like to add that George Mason University’s Department of Rehabilitation Science is involved in various movement studies. I’ve had lots of good feedback from people who have benefited from participating. Clinton Wutzke from GMU visits our cafes every year to keep us up to date on what’s new. You can contact him at 703-993-1903 or firstname.lastname@example.org.
Hospitals and Parkinson’s
We’ve been talking to local support groups this year about staying safe in hospitals, so this article from Parkinson’s Life caught my eye. Are UK hospitals safe for people with Parkinson’s? Click here to read it. The experiences in this article sounded familiar to me, and I’m sure to you, too. Parkinson’s UK has a campaign called, Get It On Time. Sounds like something that would be helpful for us here in the US! Click here to read more about it.
Here’s some information about a helpful resource available from Fairfax County.
The Human Services Resource Guide
is available on the Fairfax County website and gives immediate 24/7 access to detailed information on thousands of nonprofit and government services available to Fairfax County residents. Listings include detailed service descriptions, eligibility requirements, locations (maps and directions), and contact information.
There are resources for food, housing, financial assistance, medical/health/dental, domestic violence prevention, shelter, employment, clothing/household, transportation and veterans.
Click here to access the guide.
New resources for newly diagnosed
Parkinson’s Foundation (the national foundation based in Miami) has some great educational resources, some that we share in our PARKit. They have a new resource for newly diagnosed people, including a free kit you can download. Parkinson.org/NewlyDiagnosed
Thank you Cori, for sharing this information with us!
Caregiver Peace Corps
There are efforts to develop a national volunteer care corps for caregivers to help older Americans age in place. From the article:
This fall, project leaders will invite organizations across the country to submit proposals to serve “non-medical” needs of older adults and younger adults with disabilities. Next spring, up to 30 organizations will get 18-month grants of $30,000 to $250,000, according to Juliet Simone, director of national health at the Oasis Institute.
Click here to read the entire article on the Kaiser Health News website.
Last week I wrote about two local music therapy events. Then I received a newsletter from Capital Music Therapy Services that led me to this article – Using Music At Home: Music and Mindfulness.
Click here to read it. It reminded me of our caregiver appreciation luncheon and our speaker Martha Brettschneider who will be speaking about mindfulness . . .
Caring for our Caregivers
PSN’s annual caregiver’s appreciation luncheon is filling up fast!
Click here for details and to register (scroll down on the page) on our website, or click here to download the flyer and share with your Parkinson family caregiver friends.
Cafe Ashburn – slight changes for our October 23 meeting
There is a slight change in time for our cafe this month. We will meet from 11:30 am – 1:30 pm. This is because we are joining a local networking group, Loudoun Senior Interest Network, to hear the new Inova Movement Disorders Specialist, Dr. David Whitney, give his presentation on recent updates in Parkinson’s treatments.
Please RSVP today so I can give Waltonwood the numbers to help them plan.
I hope this newsletter is helpful and we’ll see you Out & About soon! This week we’ve got a two cafe week with Cafe Alexandria this morning and Cafe Ashburn on Wednesday. As always, details are below!