Parkinson Social Network

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!