This week has been a busy week for the Parkinson Social Network! It was lots of fun though, and I really enjoyed meeting people from all over Northern Virginia.
On Monday, we launched Cafe Alexandria! Many thanks to our gracious hosts at Brandywine Living in Alexandria – not just for hosting us, but also for the wonderful welcome and delicious lunch! We had a lovely time getting to know each other including meeting several PD Buddies, and learning that some people who were meeting for the first time at our cafe also lived in the same neighborhoods. Alexandra from Old Dominion Home Care brought tulip shaped cookies covered with red icing (and wore a red top to match!) and talked about a new support group she is helping to organize at Paul Spring Retirement Community. We are aware of other people who are interested in starting support groups in Alexandria including groups for people contemplating DBS (Deep Brain Stimulation) or who have had the surgery, women with Parkinson’s, and caregivers. We hope they can join us at our next Cafe Alexandria on Monday, May 21, when we can talk about connecting people in the Parkinson’s community who live in Alexandria and surrounding areas.
On Wednesday, we recognized Parkinson’s Awareness Month at Cafe Fairfax. Thank you again to our wonderful hosts at Insight Memory Care Center! And thank you, too, to Lauren with Old Dominion Home Care for providing the yummy red velvet cake in the photo.
We were visited by Michelle Smith, Caregiver Specialist with the Fairfax Area Agency on Aging. Michelle brought all kinds of Gadgets and Gizmos for a kind of show and tell. We’re working on a new page on our website to share some of her ideas. We’d also love to hear from you . . . Do you have any gadgets and gizmos that you find helpful with your daily tasks? Send them to us at Sonia@ParkinsonSocialNetwork.org and we’ll include them.
Inova Movement Disorder Specialists presentation
Doctors Rogers and Falconer gave their presentation on Advancements in the Treatment of Parkinson’s Disease: Neurorestoration and Beyond at Lansdowne Resort and Spa on Thursday night. I’ve heard this presentation several times now, but I always learn something new. In fact, the PowerPoint that is posted on their website at www.inova.org/movement-disorders-program will be updated in the next couple of weeks to reflect changes in the past 6 months. An important part of their message is that there have been so many advancements in treatment of PD in the past 5 years, and there is much more that is being worked on to help people feel better and experience a better quality of life with Parkinson’s.
Amazon Echo/Voice Assistance
Tuesday afternoon I attended a presentation at Waltonwood in Ashburn to learn more about Alexa and Amazon Echo. Paul Burden is the founder of Our Voice, a company dedicated to bringing voice technology to seniors, the blind and low vision community and those dealing with neurological issues. We learned how by just speaking to Alexa, you can have books read to you, play music, place and receive phone calls, alert family and friends when in distress, search the Internet, shop, and so much more. Paul helps people get set up with this technology and understand the features. More information at www.OurVoice.net.
As a reminder . . . Join us next Wednesday for Cafe Ashburn!
We’re meeting on
a new day of the month – the fourth Wednesday,
at a new time – from 11:00 am – 1:00 pm,
with a new menu – lunch!
Click here for more details. Please help us with planning and RSVP, particularly for events where lunch is being offered. It really helps!
We’re shining a spotlight on Parkinson’s today
but also on all of our amazing friends, touched by this disease,
who empower each other to make the most of life with Parkinson’s.
Whenever I meet people at non-Parkinson related events, I am always amazed by how many people know someone with Parkinson’s, often a close relative. Despite this, many people not living with Parkinson’s don’t really understand what it means to have Parkinson’s. They usually know about tremors, and maybe a few other well-known symptoms like freezing, but they are often surprised to learn how different the symptoms can be from one person to the next, and how Parkinson’s can affect the entire body.
Not understanding how Parkinson’s affects a person can be quite detrimental to someone who is living with it. I’ve often told the story of one of our friends who fell in a car park at a fast food restaurant. He wasn’t badly hurt, just shaken. The bystanders who rushed to help him thought he was drunk or on recreational drugs, as did the emergency responders who were called in to assist. Our friend stuttered (particularly when stressed), moved slowly, and also had a tendency to freeze. As you can imagine, the more people crowded around him and asked him questions, the more stressed he became, and because of the stress it became more difficult for him to respond. Eventually, he got his message across that he had Parkinson’s and was not drunk, but it was a very upsetting event for him. Since then, we’ve recommended that people with Parkinson’s carry a card that the Parkinson’s Foundation provides for free and states, amongst other things, that “I am not intoxicated”. You can click here if you’d like a copy.
A little bit of understanding goes a long way. If the well-meaning bystanders understood how Parkinson’s affected my friend under stress and how it made him stutter more, they might have been more patient and allowed him time to answer their questions. And if they understood that he was freezing because it’s common for someone with Parkinson’s to freeze when they feel closed in, they might have backed away a bit and given him some room to catch his breath. Just these two things – patience and space – might have prevented them from calling the emergency responders who inadvertently added to the confusion because they weren’t familiar with Parkinson’s symptoms either.
A little bit of understanding could have helped our friend retain his dignity, and not have to carry a card in his wallet that says “I am not intoxicated”.
This month, April, let’s shine a spotlight on Parkinson’s together to build that understanding and help people with Parkinson’s have a better day.
April 11 is World Parkinson Day
Let’s shine a spotlight on Parkinson’s together!
All over the world, plans are underway to raise awareness about Parkinson’s disease all through April., Parkinson’s Awareness Month.
As we did last year, Parkinson Social Network will be active on social media and participating in the #UniteForParkinsons campaign. If you would like to learn more about it, check out the website: www.UniteForParkinsons.org.
We are also excited that we will be offering two new cafes in April – in McLean and Alexandria – to bring together our friends touched by Parkinson’s in these communities. There’s more information about all our cafes here, and here, and we’ll be sure to keep you updated!
Here’s what’s happening at our cafes in April
Save the date & location for the cafe that works best for you!
Location information on our cafes page (click here) or to the right of this post.
Café McLean – Wednesday, April 11
11:00 am to 1:00 pm (light lunch)
Rock Steady Boxers visit Cafe McLean
This month we’ll introduce you to Rock Steady Boxing NOVA in McLean – an evidence-based boxing program for people with Parkinson’s. Alec and some of his crew will visit our cafe to give us a demonstration!
Café Alexandria – Monday, April 16
11:00 am to 1:00 pm (light lunch)
Getting to know you at Cafe Alexandria . . .
We are looking forward to meeting folks in the Alexandria area and talking with them about their interests and needs. We’ll introduce you to several people who are interested in starting a variety of Parkinson support groups in Alexandria, and talk about what Parkinson-related activities you’d like to see in your community.
Café Fairfax – Wednesday, April 18
10:00 am to 12 noon (coffee & donuts)
Gadgets and Gizmos come to Cafe Fairfax
Michelle Smith, Caregiver Specialist with the Fairfax Area Agency on Aging, will visit us bringing her bag with all kinds of fascinating things to help make our daily lives just a little bit easier to manage. Please bring any of your own handy tips, tricks or resources for show and tell!
Café Ashburn – Wednesday, April 25
11:00 am to 1:00 pm (light lunch)
Gadgets & Gizmos and Show & Tell in Cafe Ashburn
We’ll share what we learned from Michelle Smith at Cafe Fairfax, but we’d love to hear from you, too! If you have any handy tips, tricks or resources that help make it easier for you to manage your day, please bring them for our own show and tell!
Our cafes are free, thanks to the generosity of our hosts,
but you can help us with planning,
particularly at the cafes that offer a light lunch.
Please click here to RSVP and thank you for your help!
I’m delighted to share this news, particularly for people in Loudoun county and surrounding areas. We’ve heard from Dr. Falconer that the Inova Movement Disorders Program will open their new Loudoun multidisciplinary clinic on Friday, April 20, with the goal of improving access to specialty Parkinson’s and Movement Disorders care. It will be open every other Friday, rotating between Dr. Rogers and Dr. Falconer, and will be based out of the outpatient Inova Rehab center next to Inova Loudoun hospital.
Current patients may want to follow up with their doctor at this new location but Dr. Falconer and Dr. Rogers also want to ensure that the clinic is open to new patients who otherwise could not make the journey to Fairfax.
If you would like an evaluation (medical and PT/OT/SLT or just medical) please call their office to schedule and ask for Michelle – 703-845-1500.
The Inova Movement Disorder Specialists are giving a presentation in Leesburg on Thursday, April 19.
Click here for more information.
If you tried to RSVP before and were unsuccessful, please try again as they’ve made corrections to the system.
All over the world, plans are underway to raise awareness about Parkinson’s disease all through April. As we did last year, Parkinson Social Network will be active on social media and participating in the #UniteForParkinsons campaign. If you would like to learn more about it, check out the website: www.UniteForParkinsons.org.
We are also excited that we will be offering two new cafes in April – in McLean and Alexandria – to bring together our friends touched by Parkinson’s in these communities. There’s more information about all our cafes here, and we’ll be sure to keep you updated!
April 11 is World Parkinson Day
Let’s shine a spotlight on Parkinson’s together!
I love to read! Do you? If there were ever to come a time when I had difficulty reading it would be a very upsetting time for me. So I was delighted to introduce Ken Plummer from Fairfax County Library Access Services to the folk who attended Cafe Fairfax on Monday. Ken talked about three important services that many of us didn’t know about, and can help us to keep on enjoying the written and spoken word available from our local library. You will need a library card but if you no longer have one or you haven’t used it for several years, it is easy to apply for a new card.
1) Free home delivery service
There is no cost for books to be delivered to your home and for you to return them. A dark blue zippered bag, clearly labeled “Access Services” is used to hold the books, large print books, CD’s, audio books, magazines, etc. that you order. The mailing label is located in a clear pouch and has your address on one side with the library address on the other. When you want to return the items to the library you simply lift the label out, turn it around to the side that displays the library address, and pop it back in. There is no need sign for the bag when it is delivered.
This service is available to anyone who is unable to travel to a local library due to disability, illness or frailty. You can use it for a short period of time, for example while you’re recovering from a hospitalization, or long term. Reader Advisers will help you select the books you’d like to read. If you’d like to apply for this service you can fill in an application online (click here) or call 703-324-8380.
2) Talking Book program
This service provides audio books and playing equipment to individuals of all ages who are unable to read or use standard print due to blindness, visual impairment or physical limitations such as being unable to hold a book. The books are read by professionals and they make the effort to read everything in a publication. Sometimes they even contact the author to ask about pronunciation for foreign words. They record 2,000 titles each year!
The National Library Service (NLS) for the blind and physically handicapped provides the Talking Book program and it is a national program. If you think this might be useful for someone who lives outside of Fairfax County please share this information with them. There is a catalog, Talking Book Topics, available in large print, on cassette, and online that lists what is available.
There are two ways you can listen to Talking Books:
- You can download an app to your smart device. It’s called BARD mobile app.
- You may need special equipment to play the NLS books and magazines but it is also loaned for free. Ken brought one to show us and it was portable, weighs two pounds, has a long battery life of 29 hours plus, and is easy to use with spoken instructions guiding the user. You can adjust the speed as well as the tone (from a high pitch to a lower one) for people who are hard of hearing. One of our friends at the cafe was familiar with an older version of the device that weighed seven pounds and could only run two hours on battery! Lots of improvements since then.
The Talking Book program is available through Access Services (contact info below) and you’ll find more information about it on the NLS website: . An application form is required for certification and there’s info about it on the library website (click here).
3) Borrow e-books for your Kindle device or reading app
You can borrow e-books, audio books, and more using an app called Overdrive. You can search for titles and authors and it’s easy to see if the book is available or if there is a wait list. Check out time is 3 weeks and it is user friendly to how long you need to read it. You can download to your device or just read it through the app. Click here to check it out.
For more information about Library Access
Visit their website at www.fairfaxcounty.gov/library/branches/as
Phone: (703) 324-8380 TTY (703) 324-8365
If you would like Ken to present to your group, his email address is:
Ken also left brochures, application forms, catalogs and lots of other good information with me so I can share them with you when we meet at cafes and other events. It looks like there is a lot to explore at our local library either in person or from our homes!