Parkinson Social Network

Don’t Fall For It!

This morning I was thinking about falls. Not the autumn/season kind, but the kind where you can land on the ground, badly hurt. As many of you know, I teach an aquatic class for Parkinson people and their care partners. It’s called Flamingos in Training because much of what we do is working on improving our balance. With the cold weather upon us and the potential for having to negotiate slippery surfaces I want to share some simple tips to help you stay on your feet this winter and out of the hospital.

  • grroved rubber soled shoesWear shoes that fit properly on your feet. Check that laces are tied, and there are no loose ends for you to trip on. Soles made of non-slip rubber or neoprene, grooved for walking on snow or ice, are best.
  • Beware dark patches on pavement that look wet. They can also be icy and slippery.
  • Look for a path with the most traction. Sometimes it’s safer to walk on grass, dirt or snow than on the pavement.
  • Keep your hands out of your pockets. If your hands are cold, wear gloves or mittens.

walk like a penguin
Walk Like a Penguin
I share this with my aquatic class every winter. When you’re walking on slippery surfaces it’s the one time you DON’T want to take BIG steps. We practice walking like a penguin in the pool. Sounds funny, I know, but the water holds us upright so it’s a safe way to practice.

Walk With Intent
I really like how the Parkinson Voice Project teaches people to speak with intent, or to put it another way . . .
Think about what you’re going to say and how you’re going to say it.
So my version is to walk with intent . . .
Think about where you need to go and how you’re going to get there.

Speaking of Getting Out & About and Winter . . .
We have two cafes next week! Join in for some holiday fun by wearing your favorite holiday attire. At our Cafe Fairfax on Wednesday, our visitor will be Courtney Arroyo from the Fairfax County Office of Emergency Management to talk about emergency preparedness. Courtney is in charge of outreach to people with disabilities and other vulnerable communities She has a presentation that integrates all county services related to safety and emergency preparedness, and will bring us some printed material to help us be prepared.

Hoping to see you out and about soon! Will we see you at our cafes in Fairfax and Alexandria next week?


Coffee, Donuts and Friends

There are no strangers here, just friends we have not yet met.

Do You Know Someone Who is “In Denial”?

This week I heard about a couple of people, diagnosed with Parkinson’s, who were described as being “in denial”. I often hear this from concerned friends and family members. Given some of the horror stories I hear about how some patients are given their diagnosis, I’m not surprised. Still, I’m always sad to hear about people who are isolating themselves and missing out on a rich source of support and friendship – other people in our Parkinson community.

Coffee tastes better with a friend

Donuts do, too!

We started our cafes so people would have a place to go and just relax with others because we recognize that the thought of attending a support group can often be intimidating. I know walking alone into a strange place where I don’t know anyone doesn’t excite me at the best of times. People who come to our cafes understand what living with Parkinson’s is like, and they are caring and welcoming. Although Parkinson’s is what brings us together, we mostly talk about lifestyle things. Patients are people, too, so while you’ll meet other patients at our cafes, the focus is on us as people.

If you know someone who is living with Parkinson’s and in denial, alone at home, please invite them to come to one of our cafes. Family and friends are welcome to come along, too. Let’s help the Parkinson people we know who are in denial to feel empowered about making the most of their life with Parkinson’s.

Did George HW Bush have Parkinson’s?
With the passing of former president George HW Bush people are asking about vascular parkinsonism – what is it, and how is it compared to Parkinson’s? Parkinson’s Life has a good explanation. Click here to read about the differences between the two conditions.

Emergency Preparedness
flamingo in snowAt our Cafe Fairfax on December 19, Courtney Arroyo from the Fairfax County Office of Emergency Management is coming to speak to us about Emergency Preparedness. We last talked about this back in January 2017 and I created a page on our website to record all the things we learned from each other. Check out our Preparing for an Emergency page. I hope to add to it after Courtney’s visit. In the meantime, I just learned about another handy resource from Fairfax County – their Guide to Snow. Click here to read all about it!

Hoping to see you out and about soon!


The Holidays are Here!

Happy Holidays

Thank you for your support on Giving Tuesday!
It feels like Thanksgiving Day turned into Thanksgiving week. Thank you so much to everyone who donated to our Parkinson Social Network for Giving Tuesday! Your contributions help to support programs like this weekly e-newsletter, so we can share ways for you to get Out & About and make the most of your life with Parkinson’s. If you missed our Giving Tuesday emails, you can click here to visit our Donate page and learn more about giving to PSN. We’re very grateful for your encouragement and support!

Cafe Ashburn
It sure was a blowy day on Wednesday for people to be out and about, so thank you to all of you who joined us! Alec Langstein from Rock Steady Boxing visited us to talk about how boxing is proven to help people improve symptoms. We’re hearing lots of positive feedback about Alec’s classes so if you’re interested, you can contact Alec at:
Email:   |   Phone: (571) 730-8553
In Mclean
When: Mondays/Wednesdays/Fridays from 1:30 pm
Where: 8501 Tyco Road A-2, Vienna, VA 22182
In Sterling
When: Mondays/Wednesdays/Fridays from 10:00 am
Where: Disciple MMA Academy, 21620 Ridgetop Circle Unit 100A, Sterling, VA 20164
You’ll find more information at Alec’s website:

‘Vacation as medication’ online survey
The European Parkinson’s Disease Association (EPDA) is supporting this study on the impact of vacation on Parkinson’s symptoms. They are looking for people who have been on vacation at least once between 1 June 2016 and 30 September 2018. The survey will ask questions about your holiday destination, activities, food, sleep, stress, temperatures and much more.
The survey is open until 31 December 2018 and takes just about 30 minutes to complete.
Click here for more information and to complete the survey.

Dance for PD® – new classes on their website
Each month, Dance for PD® releases a new dance class to stream but this month they included a bonus class. Both classes are taught by Dance for PD® lead teachers. Anyone can join in to these classes from the comfort of their home!
Click here for Pat Hall’s class.   Click here for Heather Waldon’s class.

Holiday/Christmas Markets
We have some more Christmas markets to check out. Thanks for sharing, Angela!
Downtown DC Holiday Market – November 23-December 23, 2018
Heurich House Museum Christkindlmarkt – November 30 – December 2, 2018.
Swedish Christmas Bazaar – December 1, 2018, 11:00 am – 5:00 pm

Parkinson Voice Project – Holiday Concert (online)
Featuring the Intentional Singers
Tuesday, December 4, 2018, 6:30 pm CT / 7:30 pm EST
For more information and to register, click here.
Parkinson Voice Project is based in Richardson, Texas, so it’s hard for us to attend their performances even when they’re offering Krispy Kreme donuts! They kindly stream their concerts online though so we can still see them. BYO donuts!

Insight’s Winter Wonderland Holiday Party
Thursday, December 6, 2018, 4:00 pm – 7:00 pm
Join Insight Memory Care Center for a Winter Wonderland! Come enjoy delicious treats, festive drinks, and holiday cheer.
New this year is a holiday market with unique holiday gifts for sale!
All proceeds go to benefit Insight Memory Care Center.
Click here to RSVP.
Questions? Please contact Insight at 703-204-4664 or

Seasons Cheatings: Protecting Yourself from Holiday Frauds & Scams
This is a 2 part free webinar from AARP. It’s a question and answer webinar where you’ll learn to recognize the warning signs of fraud – including what to watch out for when shopping online, purchasing gift cards, and having packages delivered. Thank you, Ruth Ann for suggesting this!
Click here for more information and to register now.

Hoping to see you out and about soon!


Focus on the Donut Instead of the Hole

Donut worry, be happy!

Here we are at the beginning of the Holiday Season already. 2018 has just flown by! As has this last week. We had fun at two cafes and now this weekend family and friends are coming together to celebrate Thanksgiving.

Cafe Alexandria
It was almost standing room only at our cafe at Brandywine Living in Alexandria! Our friends from the Springfield support group, led by Ed and Lilian, joined us. Most of the group already knew each other, but they were also very welcoming of first time visitors. To get the conversation started, we shared what we were thankful for. It was lovely to hear how so many people were thankful for everything that Ed does for his group.

I learned a new saying, too – Focus on the donut, instead of the hole. Needless to say, with donuts being a feature of our cafes, this definitely caught my attention! But there’s another reason. Parkinson’s takes so much from people and it’s too easy to focus on the loss. Inspired by the upbeat attitude of many of our Parkinson friends, we hope we are showing people how much they can still do, enjoy, and contribute. Focusing on the goodness of the donut.

Cafe Fairfax
We were a smaller group on Wednesday with many of our friends traveling or preparing for the holiday weekend. When we asked, “What was the worst thing your mother ever made you eat?” we learned that most people are not fond of organ meats. It seemed to be a good idea to change the topic to more yummy food, and we learned about a place in Williamsburg called A Chef’s Kitchen. You can watch the multiple-course meals being prepared and then you can enjoy them! Click here to read more. We also talked about the German Christkindl Market in Reston. The best information I was able to find about it is that it is at:
German Armed Forces Command
11150 Sunrise Valley Drive, Reston.
Usually the first Thursday in December from 4:00 pm – 9:00 pm, so this year that would be December 6.
Contact phone number is 703-390-3175 to confirm date and time.

Hoping to see you out and about soon! Cafe Ashburn is next week!


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