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
website: www.ParkinsonSocialNetwork.org
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All underlined words and phrases are links for email or websites.
Parts of Out & About will be posted on our blog or community events pages.
There's also an archive for previous newsletters here.
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Our events in October
Please help us with planning
and click on the links to RSVP for the events you'd like to attend
or send an email to Sonia@ParkinsonSocialNetwork.org.
Family and friends are welcome to join us, too! |
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Cafe Alexandria - Monday, October 21
11:00 am to 1:00 pm (light lunch - click here to RSVP )
3rd Monday of each month at:
Brandywine Living at Alexandria
5550 Cardinal Place, Alexandria, VA 22304 map
Call (703) 940-3300 for directions.
PARKING is underground and accessible from the back of the building.
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Cafe Ashburn - Wednesday, October 23
11:30 am to 1:30 pm ( lunch - click here to RSVP)
Please note the slight change in time.
We normally meet from 11:00 am - 1:00 pm
We are doing something quite different this month!
Dr. David Whitney, the new Movement Disorder Specialist with Inova will be speaking to a local networking group, the Loudoun Senior Interest Network or LSIN. You may be familiar with LSIN if you picked up their directory at one of our cafes. We are welcome to join LSIN to hear Dr. Whitney speak and enjoy a delicious lunch. You'll also have the opportunity to meet representatives from various local businesses that provide services and resources for long term care.
I hope you can join us but it is imperative that you RSVP for this event - please!
I need to get numbers to the staff at Waltonwood because as you can imagine this will be a large event for their kitchen to cater for. If you have any questions about this event or Dr. Whitney, please contact me at Sonia@ParkinsonSocialNetwork.org and I'm happy to help.
4th Wednesday of each month at:
Waltonwood at Ashburn
44141 Russell Branch Pkwy, Ashburn, VA 20147 map
Call (571) 266-1810 for directions.
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At our cafés we help each other
to make the most of life with Parkinson's.
We welcome anyone living with Parkinson's and related movement disorders, as well as family and friends. You'll find more information about our cafes on our Cafes page.
Come for the coffee, stay for the company and conversation!
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Our events in November
Please help us with planning
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Saturday, November 9, 10:30 am - 1:30 pm
Caring for our Caregivers ~
PSN's 2nd Annual Caregiver Appreciation Luncheon
Our PSN Board of Directors is well into planning this special event for our caregivers. We would love your help and feedback to make this another happy event for caregivers. Please mark the date on your calendar, and drop me a line if you'd like to help!
At: Insight Memory Care Center (the main building)
3953 Pender Drive, Fairfax, VA 22030
In recognition of National Family Caregivers Month Parkinson Social Network is honoring family caregivers in our Parkinson’s community. You are invited to our second annual caregiver appreciation luncheon to relax, refresh and enjoy!
Featuring door prizes, coffee and donuts, and buffet luncheon.
Our keynote speaker will be Martha Brettschneider . . .
Mindfulness teacher, speaker, writer, and photographer, with a passion for inspiring and supporting mindful living.
If you need someone to care for your significant other, we have arranged activities and lunch in an adjacent room. To make arrangements for care, please register by Friday, October 25, 2019.
Please help us to make this a Very Special Event and register by Friday, October 25. Limited seating for this event, so don’t delay!
Questions? Please contact Sonia at Sonia@ParkinsonSocialNetwork.org or 571-286-5000. To register, please go to our website: https://parkinsonsocialnetwork.org/caring-for-our-caregivers
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Side by Side Support Groups -
Wednesday, November 13
For those with Parkinson’s and those who care . . .
10:30 am - 12:30 pm (light refreshments/potluck* - click here to RSVP)
2nd Wednesday of each month at
Virginia Hospital Center, Urgent Care - Carlin Springs
601 S Carlin Springs Rd, Arlington, VA 22204
Enter via the Urgent Care Center entrance, turn right into the Wellness Room
Normal Aging vs. Dementia
Lindsey Vajpeyi, Director of Education and Outreach for Insight Memory Care Center will join us to discuss the changes that occur with age, warning signs of a memory problem, and what to do if someone you love is experiencing symptoms of dementia or memory impairment.
A new kind of support group in Northern Virginia!
Two support groups, each in their own space next to each other.
1) For caregivers – to share and learn from each other
2) For people with Parkinson’s – to engage in group activities and share with each other.
Free and all are welcome!
*If you'd like to bring munchies to share, they will definitely be appreciated!
To help us with planning, please let us know if you’d like to attend.
Click here to RSVP or email Sonia@ParkinsonSocialNetwork.org
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Cafe Fairfax - Wednesday, November 20
10:00 am to 12 noon (coffee & donuts - click here to RSVP)
Our visitor this month will be Courtney Arroyo
Emergency Management Specialist, Planning and Policy Analysis Division, and Access and Functional Needs Integration Liaison with the Fairfax County Office of Emergency Management. Courtney visited us last December and has a wealth of information about how to prepare for emergencies.
3rd Wednesday of each month at:
Insight Memory Care Center,
Linda and Lou Mazawey Education & Support Center
3955 Pender Drive, Suite 100, Fairfax, VA 22030 map
Call (703) 204-4664 for directions.
DIRECTIONS:
From Waples Mill Road turn onto Pender Drive.
Then turn right at the 2nd driveway;
head straight back,
the road will curve around to the left and 3955 will be on your left.
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But wait! There's more!
Classes for Caregivers follow Cafe Fairfax from 1:00 pm - 3:00 pm
- Topic for November: End of Life Considerations
- As the end of life approaches, it is a difficult time to deal with the emotions, while still coordinating care for a loved one. Come learn about the various aspects and benefits of palliative care and hospice.
We are welcome to stay at Insight after the cafe, and participate in this program that is specifically designed to assist family caregivers.
All sessions are FREE, and respite care may be available by request; please notify us when registering to confirm availability.
To register, contact Lindsey Vajpeyi at lindsey.vajpeyi@insightmcc.org or 703-204-4664.
Click here to check out Insight's events calendar for details about their other classes, workshops, support groups, and social events.
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With your contribution we can continue to educate, advocate, support and enrich the lives of those touched by Parkinson's disease.
Click here or on the button below to . . .
Parkinson Social Network
is registered as a 501(c)(3) non-profit organization. |
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