Parkinson Social NetworkIt’s hobbies and collections time again!
We’re having lots of fun learning about the things people do for fun and the things they collect. This photo is of Edward carrying his baskets inside the basket he’s wearing as a kind of backpack. He made them all, and has taught the art of creating baskets. Edward also brought one of his handcrafted heirloom brooms. Ask him how he got 400 pounds of broom corn from his SUV down to his basement – it’s quite a story!
We’re looking forward to Cafe Ashburn this Wednesday to learn about more hobbies and collections, and the many things our friends have in common other than Parkinson’s.
Davis Phinney Victory Summit
The Davis Phinney Foundation for Parkinson’s is holding one of their Victory Summits in Philadelphia on Saturday, August 24. I haven’t been to one yet, so I’m really looking forward to it. The focus of this organization is to help people with Parkinson’s to live well and they describe their Victory Summits as “a moving day of information and inspiration” and “an upbeat, fast-paced event of community and connection, filled with laughter and conversation”. I’m all for that! For more details, click here. Will we see you there?
Does the Parkinson’s Profile Exist?
Click here to read Karl Robb’s thoughts on a question that I’m sure many of us have wondered about. What do you think? You can share your thoughts in the comments at the bottom of Karl’s blog page.
Congratulations to the Hagerstown PD Support Group on their recent TV coverage!
Click here to read more. Art Guyer, the Co-Facilitator of Hagerstown Parkinson’s Support Group says, “We believe that the social aspects are just as important as the educational aspects, so the more people we can reach in the community in the four-state area actually, the better off the community will be”. That’s how we feel here at our Parkinson Social Network, Art! Thank you for spreading the word.
Resources
At our June Side by Side support groups in Arlington, we shared a number of resources that people have found helpful. Then at the Fair Oaks support group we talked about some of them so I’m sharing them here. It’s a bit of a mixture of topics, but I hope you find something helpful.
Exercise
The RBG Workout: https://rbgworkout.com/
Transportation
- Independent You, a company that offers driving services: https://www.independentyou.net/driving
- In Arlington there are ART buses: https://www.arlingtontransit.com/
- Red Cabs, offer senior discounts: https://www.fairfaxredtopcab.com/services/
- Arlington 55+ was suggested but I couldn’t find mention of drivers for individuals. They seem to offer bus trips. Here’s what I found: https://parks.arlingtonva.us/programs/adults-55/seniors-travel/
- The Villages Network including:
- The Arlington Neighborhood Village: https://arlnvil.org/
- Lake Barcroft Village: https://www.lakebarcroftvillage.org/
- At Home in Alexandria: http://athomeinalexandria.org/
- Reston for a Lifetime: www.restonforalifetime.org
- More villages: https://www.vtvnetwork.org/
- Shepherd’s Center of Annandale & Springfield https://shepherdscenter-annandale.org/ . There are other Shepherd’s Centers in Oakton-Vienna, Fairfax-Burke and McLean.
- NV Rides: http://www.nvrides.org/ They kind of act as an umbrella and you’ll find local villages and Shepherd’s Centers listed on their website.
Speech therapy programs
- LSVT LOUD: https://www.lsvtglobal.com/LSVTLoud
- Matt McKeon: https://www.mckeonmatt.com/
- Parkinson Voice Project, Speak Out!:
https://www.parkinsonvoiceproject.org/SPEAKOUT - Susan Wranik leads the communications club at the Kensington in Falls Church
- There are home care companies that will come to your home for therapy.
- One suggestion was to check out what your secondary insurance would cover with regards to therapy – physical and speech. You may be able to have more therapy sessions covered.
DatScan – what is it?
From the (national) Parkinson’s Foundation: http://toolkit.parkinson.org/content/datscan From the American Parkinson Disease Foundation: https://www.apdaparkinson.org/article/what-is-a-datscan-and-should-i-get-one/
Medications
Revolution Meds, contact is owner John Jacoub: http://revmedsrx.com/
They deliver, and offer prepackage medications by dosage.
Dr. Rogers talk to the Women with Parkinson’s support group:
https://womenwithparkinsons.com/2019/04/10/april-meeting-notes-dr-sean-rogers-addresses-our-numerous-concerns-answers-all-our-questions/
Save the Date! – Saturday, November 9
PSN’s 2nd annual Caregiver Appreciation Luncheon
At: Insight Memory Care Center
We would love your help and feedback to make this another happy event for both caregivers and people living with Parkinson’s. Please mark the date on your calendar, and drop me a line if you’d like to help!
Hope to see you Out & About soon! Will we see you at Cafe Ashburn on Wednesday? Details on our cafes page.
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org
New CDC Project for Parkinson’s
Have you ever wondered how many people are living with Parkinson’s in the U.S.? Well, you’re not alone. Today we have some exciting news for you!
National Neurological Conditions Surveillance System (NNCSS)
Thank you, Angela for forwarding the information below from an email from the CDC. First, a bit of the background from Angela:
For many years (at least 8 years), grassroot advocates through the former Parkinson Action Network (PAN) and the Michael J Fox Foundation advocacy teams asked Congress to authorize and fund the CDC to create a surveillance system to learn about the numbers of those living with Parkinson’s and Multiple Sclerosis. Congress approved the legislation last year and this email from the CDC acknowledges that work has begun on this important project!!
The goal as they state on the website is to provide “useful estimates” of who in our country is living with Parkinson’s and MS. The surveillance system will “identify and summarize exsisting data” to find this estimate. The data will not have actual patient names attached. The hope is this model will be replicable to help other neurological conditions find out their actual numbers as well.
Angela
From the CDC newsletter:
In 2016, Centers for Disease Control and Prevention (CDC) was authorized by Congress to initiate development of a National Neurological Conditions Surveillance System (NNCSS). Congress appropriated $5 million for the NNCSS as part of the FY 2019 spending bill for the U.S. Department of Health and Human Services.
With this initial investment, consistent with the 21st Century Cures Act, the NNCSS will begin collecting and synthesizing data to help increase understanding of neurological disorders and to support further neurologic research.
To share updates and the latest news and developments, CDC has updated its NNCSS web page, which now includes:
• Logic model to describe the aims of the project and specific efforts in 2019
• Frequently asked questions (FAQs) to provide context and helpful information on the project, its stages, funding, and more
• Resource links to other CDC surveillance and data initiatives
Here’s a study that in the future may be related to the NNCSS mentioned above.
Study on the Economic Burden of Parkinson’s Disease
From the Parkinson’s Foundation we have information about the economic burden of Parkinson’s in the U.S. – $51.9 billion – nearly double previous estimates.
Click here to read more about the study.
Caring and Parkinson’s – Survey
The European Parkinson’s Disease Association (EPDA) is doing a survey on the challenges facing Parkinson’s caregivers (carers). Although their main focus is Europe, the are encouraging carers from all over the world to complete the survey. They are also asking people to share information about this survey with other people and organizations that connect with carers because they would like to reach as many as possible! The survey is open now until 6 September, 2019, and should take about 15-20 minutes to complete. Click here for more information about this survey and for links to complete it.
It’s a busy week with our cafes in Alexandria and Fairfax. The Fair Oaks Parkinson’s support group meets on Saturday, June 22, as well. Hope to see you out and about!
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org
Parkinson Social Network 