Parkinson Social NetworkResearch Means Hope
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 cwutzke@gmu.edu.
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.
More Music
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!
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org
The Magic of Music
The graphic above was from an interesting article, Using music therapy to stimulate the brain can help address conditions ranging from PTSD to Parkinson’s. Click here to read the article on the Inlander.com website. Scroll down for details about music therapy for Parkinson’s offered in northern Virginia.
American Parkinson’s Disease Association (APDA)
Virginia Education Day – September 28, 2019
Here are my notes from the second session which was a discussion on
Understanding, Managing & Living with Parkinson’s Disease.
This session was moderated by Debbie Dellinger, NP with PADRECC in Richmond. PADRECC stands for Parkinson’s Disease Research, Education and Clinical Centers, and is part of the U.S. Department of Veterans Affairs. On the panel there were three neurologists, a neurosurgeon and Armond Reich, APDA/Hamptom Roads Chapter President and Caregiver. For more information on the speakers, please click here.
Humans are the only species with Parkinson’s.
Diagnosis of Parkinson’s
Primary care providers usually diagnose Parkinson’s. It can take 4 years to see and be treated by a neurologist.
Why see a neurologist? For an accurate diagnosis, and because a neurologist will be familiar with new therapies and can integrate patients into multi-disciplinary team care.
Another memorable comment!
The best way to diagnose Parkinson’s is to talk to patients and try to understand them with the help of a good history, physical exam, and the help of care partner input.
Something that neurologists consider when making a diagnosis is, are the symptoms Parkinson’s or mimics? Mimics may look like Parkinson’s but are not Parkinson’s.
There is no blood draw or scan to help diagnose. There is a DaTscan, but it doesn’t differentiate between Parkinson’s and mimics. You can find more information about the DaTscan on the APDA website – click here.
As the disease progresses, changes may lead to Parkinsonisms.
Neurologists will probably order more therapy and exercise than lab results.
Dementia
The timeline for dementia is not predictable and is an active area of research.
Parkinson’s has it’s own fingerprint.
Bradyphrenia is the slowing of mental processing. Memories are not forgotten, just slow.
Is it possible that dementia can be reversed? Possibly, because it may be caused by low levels of B12, thyroid issues, depression and lack of sleep. Neuropsychiatric testing may help to pinpoint the cause. It is helpful to exercise the mind and the body.
What are medical and surgical options for treating Parkinson’s?
Medications treat the symptoms but don’t halt progression of the disease. Adjustments will always be required as the disease progresses. If the symptoms aren’t bothersome, there may be no need for medications.
Medications are tailored to the symptoms but cost can be an issue, and it is important to take other medications that interact into consideration. Different manufacturers have different formulas and some people can be sensitive to the manufacturer. Over time, other medications may be required.
The doctor should ask about non-movement symptoms such as constipation, mood, and drooling.
Who is a candidate for Deep Brain Stimulation (DBS) and when?
A patient who is 4 years past diagnosis, based on his/her goals and expectations for quality of life. Also if tremor is not being helped with medications. DBS will not directly improve gait and balance. There are new systems that can self-adjust, with more innovations in the works. If you are interested, it is helpful to talk to patients who have had it done.
Suggestions for living well with Parkinson’s
I’m sure you’ve heard this one before . . .exercise and therapy!!!
If you get stiff when exercising – be patient with yourself.
When you’re looking for a physical therapist, be sure to choose one who knows how to work with people with Parkinson’s.
The Inova Narang Foundation Active Living and Fitness Program is offering two new classes for people living with Parkinson’s and other movement disorders. I’m so excited about the singing class and I love the name – Neuro Notes! To gauge interest, they are initially offering two free classes with the intention of starting regular classes for a fee in the new year. If you are interested, and unable to attend either of the classes below, please send me an email at Sonia@ParkinsonSocialNetwork.org, and I can keep you updated about future classes.
Neuro Notes: Music for the Mind
free 90 minute trial session
Thursday, November 7 or Thursday December 5
from 12:30 pm – 2:00 pm
At: 8100 Innovation Park Drive, conference Room N4, Fairfax, VA 22301
Singing | Rhythmic Exercises | Music Listening
Singing can enhance voice volume and quality as well as improve respiration and swallowing. Music may also improve mood and cognitive function. The group music experience is also a great way to socialize!
Instructor: Toni Sweitzer, MMT, MT-BC, Co-founder and Creative Director of A Place to Be.
Questions? Contact myinovawell@inova.org.
To register, click here, then scroll down to Exercise for Life, and click on the down arrow next to Neuro Notes.
There is also a trial Parkinson’s dance class underway. One class has already been held, but if you are interested in attending the rest of the classes in this session, or in future classes, please email me at Sonia@ParkinsonSocialNetwork.org. I’ll connect you with the organizers.
Dance for Parkinson’s
October 9 – November 4
Wednesdays from 11:00 – 12:00 pm
At: 8100 Innovation Park Drive, lower level, Fairfax, VA 22301
Instructor: Lucy Bowen McCauley, Certified Dance for PD® Teaching Artist, Bowen McCauley
Here are details for another Parkinson’s music therapy class. You may remember when Capital Music Therapy Services held a class in late August.
Saturday Song and Social – Parkinson’s Music Therapy Group
Saturday, October 19, 4:30 pm – 5:30 pm
At: Capital Music Therapy Services
10560 Main St., LL-12, Fairfax
Cost: $20 per person paid on the day of the group. Cash or check. Spouses attend for free!
Registration deadline: Friday, October 18
For details RSVP: anna.piper@capitalmts.com or click here.
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 as soon as possible 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! It’s Cafe Fairfax this week and Courtney is coming to see us again to talk about emergency preparedness. Hope to see you there!
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org
Parkinson Social Network 