Parkinson Social Network

Being Prepared

Emergency Preparedness

We learned a lot from each other at our cafes this week. In addition, at Cafe Fairfax we were visited by an expert on emergency preparedness. I’ve described some of what we discussed below but included links to websites for you to find more details and contact information.

Cafe Alexandria
Aware in Care kitMuch of our conversation centered on the adventures of one of our friends who was hospitalized after a fall. As we’ve heard so many times before, there were difficulties in getting the message through to nursing staff that medications needed to be taken on time. For hospital visits, and help with educating staff, we suggest using the Parkinson’s Foundation’s Aware in Care kit. Click here for more information.

We also talked about benefit’s for Veterans with Parkinson’s. The U.S. Department of Veteran’s Affairs website has information for Veterans to help them find out if they qualify for benefits.
Click here to access the part of the website devoted to their Parkinson’s Disease Research, Education and Clinical Centers (PADRECC).
You can also find information about the medical care they offer Veterans with Parkinson’s. The nearest center to us in Northern Virginia is in Richmond. Click here for the Richmond webpage.

Cafe Fairfax
This month we were visited by Courtney Arroyo, Access and Functional Needs Integration Liaison with Fairfax County’s Office of Emergency Management. Courtney is in charge of outreach to people with disabilities and other vulnerable communities so she knew what was relevant to us. As you can imagine, she had lots of helpful information. Here are a few of the main points with links for you to find more details on the Fairfax County website.

Office of Emergency Management – Click here for their website.
emergency go bagEmergency Kits
Courtney spoke about emergency kits and having more than one. You might want to have one at home for each member of your family as well as your pets, and also one in the car. Some things that could go in a kit were spare medications and an up-to-date list of your prescriptions, copies of important documents, and cash.
Click here for the Ready Fairfax page. You’ll learn How to Prepare for Emergencies – Make a Kit, Make a Plan, Stay Informed. You’ll also find profiles for various hazards you may have to deal with like winter storms and fire, and how to stay safe.
Save money on your emergency supplies
You may have heard about the sales tax holiday in Virginia every August for buying school supplies tax-free, but did you know that during this time you can also purchase supplies for your emergency preparedness supplies? Click here for a link to the 2018 sales tax holiday – it will give you an idea of items that qualify.
Fairfax Alerts
This is Fairfax County’s FREE public alerting system where you can receive emergency, traffic, and weather alerts via email, cell phone or text. This is also where you would subscribe to the Access and Functional Needs Registry. Click here for more information.
Project Lifesaver
This program is for children and adults that may wander and get lost. Please contact your local Sheriff’s Department.
Visit your local fire station for these
–  File of Life: This is a form where you can provide critical medical and emergency contact information if you are unable to provide the information yourself. Emergency personnel know to look on your fridge for it.
–  Yellow Dot: This program helps first responders to provide lifesaving medical attention after a vehicle crash or emergency.

For your holiday dinners, we have this extremely yummy recipe for you to try. Karen brought it to our Ashburn cafe in November. It has a long history in her family, passed down from generation to generation. We hope you enjoy it as much as Karen, her family and friends, do!

Cranberry Apple Casserole
3 cups peeled apples cut into small pieces
2 cups fresh cranberries washed and drained
2 tablespoons flour
1 cup sugar
1/2 cup butter or margarine (1 stick)
3/4 cup chopped pecans
1/4 cup brown sugar
3 packages instant oatmeal with cinnamon & spice

1.  Mix apples, cranberries and 2 tablespoons flour, toss to coat.
2.  Add 1 cup sugar and mix.
3.  Put into dish.
4.  Mix melted margarine/butter with pecans, brown sugar, and oatmeal.
5.  Put this mixture over the apple/cranberries.
6. cook uncovered at 350 degrees for 45 minutes or until bubbly.

This is especially good with a turkey dinner but is also great as a warm topping for vanilla ice cream . . . very good! ~ Karen

I’m taking a break next week, so look for Out and About again next year. Wishing you all a happy holiday season, and I hope to see you out and about again in 2019!


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!


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