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.
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!
Recently, I attended Alec Langstein’s Rock Steady Boxing class in Tyson’s. It was great fun and although I was tired afterwards, it was a good kind of tired. I’d seen Alec talk about the benefits and do a quick demo but it was another thing to actually participate in his class. Alec keeps everyone moving, and with the help of volunteers, people who were unable to run back and forth and needed to stay seated were also included. Rock Steady Boxing is especially designed for people with Parkinson’s, and incorporates stretching and strengthening exercises, balance, coordination, reaction time, and using your brain. It’s been proven to help improve your balance and how you walk, as well as reduce the symptoms of Parkinson’s. And because exercise like this gets you moving your body, using your brain, and challenges you, you’ll just feel better overall. Alec will do an assessment with you so he can best tailor the program to your needs. Click here for more details and let me know what you think of those Moby squats!
We also want to send a BIG shoutout and Thank You to Alec for organizing Pints for Parkinson’s in April at Tyson’s Biergarten. Thanks to his efforts, $1922.00 was raised for Parkinson Social Network!
World Parkinson Congress 2019
WPC 2019 in Kyoto, Japan is over now. The 6th World Parkinson Congress will be in Barcelona in 2022. Karl Robb wrote about the this year’s congress and included a link to the podcasts. Click here for his blog post.
Click here to go to the WPC 2019 website. You’ll find links to follow on social media, blog posts, webinars and more.
Senior Law Day
Saturday, June 22 from 8:30am-12:30pm
At: TC Williams High School
3330 King Street, Alexandria Alexandria.
This year the theme is “Stand up for Yourself and Your Community: How to Avoid Scams”. Come hear from local experts on how to identify a possible scam and how to protect yourself or a loved one from being a victim. Attendees will also learn about what legal documents everyone should have in place and where to get help. The keynote speaker will be Christine Keiffer of the Financial Regulatory Authority, which develops tools to advance investor protection for consumers and advocates. Free document shredding will be available at the AARP Shred Truck. The event Is free and light refreshments will be provided. Register at www.seniorservicesalex.org or by calling 703 836 4414 ext 110.
For those of you in western Fairfax county . . .
Senior Fraud Prevention at Sunrise at Fair Oaks
Thursday, June 13, 3:30 pm – 4:30 pm
At: Sunrise at Fair Oaks
3750 Joseph Siewick Drive, Fairfax, Virginia 22033
Presented by: Det. Joe Moore and Officer Wayne Twombly, Fairfax County Crime Prevention
Please join us for an educational presentation on senior fraud and prevention. Learn common frauds and scams that target senior citizens due to accessibility, isolation, declining health and a ready supply of money. Learn warning signs of these schemes and ways to avoid identity theft. Please RSVP to (703) 264-0506
Free Resources from Parkinson’s Foundation
I received a reminder in my Inbox recently from the Parkinson’s Foundation about their resource library. It’s free and there’s lots of great information. The Parkinson’s Foundation is a national organization with offices in Miami and New York City. They also provide the patient safety kits called Aware in Care to help make your stay in hospital safer. We’ve been talking about them in our hospitalization and Parkinson’s presentations to support groups.
Click here to access the Parkinson’s Foundation PD Resource Library.
Click here to read more about the Aware in Care Kits and order them.
Save the Date!!
Monday, July 15 from 9:30 am – 11:00 am
“Sentimental Journey Singers” Open House
You are invited to learn more about this exciting new choral program for those with early or early/moderate memory impairments before rehearsals begin in September.
Where: Insight Memory Care Center
RSVP: Learn more online, or contact Christi Clark at 703-204-4664 or firstname.lastname@example.org.
Hope to see you out and about this week! Will we see you at our new Side by Side support groups in Arlington? Details here!
WPC 2019 meets this week from June 4-7 in Kyoto, Japan! I’ve seen a couple of familiar faces in the social media posts leading up to this amazing event. In 2016, I was fortunate enough to attend when it was held in Portland, Oregon, and it still inspires me.
Click here to go to the WPC 2019 website.
You’ll find links to follow on social media, blog posts, webinars and more.
Virginia Lifespan Respite Voucher Program
The Virginia Lifespan Respite Voucher Program (VLRVP) provides reimbursement vouchers to Virginia caregivers who reside full-time, in the same household as the person receiving care, for the cost of temporary, short-term respite care provided to individuals, of any age, with a documented disability or special need. VLRVP is focusing on people with dementia and grandparents or relative caregivers providing care to a child not more than 18 years of age or an individual 19 to 59 years of age with a disability. Respite funding is limited to $400 per family through July 31, 2021, or until funds are exhausted. Priority will be given to assist those caregivers with the greatest social and economic need. Click here for details.
This information came from an e-newsletter, Access Fairfax: News & Events for People with Disabilities 05-22-19 from Fairfax County, DFS Disability Services. For more infromation about what this department offers, call 703-324-5421 TTY 703-449-1186 or e-mail email@example.com.
Thank you, Angela, for sharing this with us!
Dance for PD® – streamed class for May
Anyone can join these classes from the comfort of their home! This particular class is taught by Heather Waldon. Click here to view and participate in Heather’s class. There’s a new class available every month, usually with a different teacher, too. To check out their archive and keep on movin’ to the music click here.
A Special Thank Your for Allegiance Aging Care Services
At our Cafe Ashburn in May, we had more people turn out than we were expecting – which was great! I want to thank Eric from Allegiance Aging Care Services for coming to our rescue and dashing out to get us some extra sandwiches. And helping us with tables and chairs, and directing people, and . . . Thanks, Eric!
Wheelchair equipped van for sale
Karen sent us this message to share with you. A friend of hers who had MS for many years recently passed away. Her husband is selling their 2011 Toyota Sienna XLE Braun Entervan XT. Here is the link to his listing on Craigslist: https://washingtondc.craigslist.org/nva/cto/d/falls-church-2011-toyota-sienna-xle/6888635136.html.
Could you please share with anyone who may be interested?
Aging Well in Alexandria
For those of you in Alexandria, we have the latest issue of Aging Well in Alexandria from Senior Services of Alexandria. Click here to read!
Hope to see you out and about this week! Will you be celebrating 35 years with Insight Memory Care Center on Wednesday? (Details here)
At our cafes this week
Last week was a 2 cafe week, and we were in Alexandra and Ashburn. Mike Harrigan from the Braining Center talked to us about the benefits of his Power Braining program and we followed along on parts of videos of classes. If you see people walking around squeezing their left ear lobe with the fingers of their right hand, and touching their nose with left hand, then switching, and switching, and switching, while marching in place and answering mathematical equations . . . well, you get the idea. If you missed our cafes this month, you can watch videos about the program on the Braining Center website. Click here for more info.
With all that we heard about brain and body fitness at our cafes this month, we also heard that there will be a show this week on PBS that might be of interest. It is called Memory Rescue with Daniel Amen, MD. “The award-winning psychiatrist, neuroscientist and author demonstrates ways to strengthen memory and treat major risk factors that destroy the brain.” I found it on the WETA schedule on Thursday, May 30 at 8:00 pm.
Famous people diagnosed with Parkinson’s
During April, Parkinson’s Awareness Month, we talked about famous people who have lived or are living with Parkinson’s. Quite a few people first learned about Parkinson’s because of these famous people. Here’s a link to a list on Wikipedia to a List of People Diagnosed with Parkinson’s Disease. Thank you, Karl, for sharing!
News from Insight Memory Care Center (IMCC)
Special Caregiver workshop
Saturday, June 8, 2019 | 11:00 am – 3:00 pm
At: Hollin Hall Senior Center
1500 Shenandoah Road, Alexandria, VA 22308
Join us for this special Caregiver Workshop with Pete Shrock, nationally known grief and crisis responder, focusing on building resilience through caregiving challenges.
11:00-12:30 | DISCUSSING GRIEF
Many think of grief as something that only happens after a loved one’s death. However, as a caregiver, you may experience grief for your loved with a diagnosis of dementia while they are still living. It is important to recognize this grief and take steps to manage your stress as a caregiver, and even more importantly, keep yourself healthy!
1:30-3:00 | JUGGLING ACT OF THE MODERN CAREGIVER
The modern caregiver is overworked and xhausted: between providing care for family members, upholding social relationships and career commitments, and managing mental and physical health, life can feel like a juggling act. Learn practical steps a caregiver can take to balance these commitments, and tackle stigmas and negative self-talk caregivers sometimes face.
This is a free event, and all caregivers and family members are invited to attend. Lunch will be provided!
Register online at: aarp.cvent.com/Caregivers0608 or call 877-926-8300.