Parkinson Social Network

This has been a busy month! But we enjoyed welcoming new friends to our cafes, both new ones and those that were already established. We’re working on programs for the coming months and we’ll keep you updated both here on our website and through our e-newsletter, Out & About with Parkinson’s. You can sign up for it at the top of the sidebar on the right hand side of this page!

Cafe Ashburn
We had a lovely turn out for our new day of the month and time for Cafe Ashburn on Wednesday. We munched on sandwiches and cookies provided by our hosts, the Tribute at One Loudoun, and talked about all kinds of things to make living with Parkinson’s just a little bit easier. A couple of people sent me links for their tips to share with you:

1. If you’re having trouble staying upright in a chair, for instance at the dinner table, sit on a triangle shaped foam cushion. The deep side should be at the front of the chair to lift your knees and that keeps you from sliding! You can have the triangle cushion custom made – click here for the website.

2. At the presentation last Thursday by Doctors Rogers and Falconer, they mentioned that you can work with some of the pharmaceutical companies and they will set up a program for your medications that is more cost effective. Here are 3 links that were sent to me to share with you by a gentleman who is using them and benefiting from substantial discounts: Rytary, Mirapex ER, Amantadine 

Andy Butler comes to town
A world traveler for Parkinson’s from the U.K. visited Northern Virginia this week on his way to the Parkinson’s Unity Walk in New York City on Saturday, April 28. Andy is the founder of Parkinson’s People, an independent online community on Facebook that connects people from all over the world. Click here to read an article about it on Parkinson’s Life. Andy is also involved with Radio Parkies. There’s another article about Andy on the Parkinson’s Women page – click here to read.
Come back and visit us again soon Andy!

Cheers,
Sonia
Sonia@ParkinsonSocialNetwork.org

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.

Our first Cafe Alexandria!

Cafe Alexandria 
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.

Christi (Insight Memory Care Center) Sonia (Parkinson Social Network) and Lauren (Old Dominion Home Care)

Cafe Fairfax
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!

Cheers,
Sonia
Sonia@ParkinsonSocialNetwork.org