Parkinson Social Network

Hospitalization and Parkinson’s

emergency room sign
Sonia speaking to Ashburn support group

Sonia speaking to Ashburn support group

This week, Ruth Ann and I spoke to the Ashburn support group. Our topic was Prepare For Your Care: How to Go Home From Hospital in Better Shape Than When You Went In. We stressed the importance of being prepared and this means everyone – caregivers and Parkinson people. We also talked about how important it is to be treated not just as a patient, but as a patient with Parkinson’s, how to get your Parkinson medications on time, and how to educate medical professionals about what you need. Alexandra from Old Dominion Home Care also joined us to share her perspective as someone who is advising staff at hospitals on how they can best care for our friends living with Parkinson’s. Finally, we sent people home with our new Parkinson Social Network PARKit (Parkinson’s Awareness Resource Kit). There’s an electronic version of most of the items in our PARKit on our website. Click here to view and download.

If you’d like us to give a presentation to your support group, please contact me at

Also at the Ashburn support group we talked about when it might be helpful to work with a home care company both in the hospital and at home. The Guide to Retirement Living Sourcebook is a great resource that lists the various companies in the greater DC area that provide home care, residential care, and other services for older adults. It is updated three times a year and it’s free! While I had a few with me to share, I didn’t have enough to go around. I’ll have some more to distribute at our cafes this month, but in the meantime, if you’d like to check it out, you can click here to order it online (for a hard copy to be mailed to your home) or click here to browse the Sourcebook online.

Women with Parkinson’s in Northern Virginia
Did you know that there is a support group for women living with Parkinson’s? It’s the only one of it’s kind in Northern Virginia. Karl, Angela and I visited the group for their first meeting this year. Kudos to Lu for starting this group in 2014, and making it possible for women with PD to come together in a safe and supportive environment. For more information you can contact Lu at or check out their website at

I have information about some webinars below for you. One of the convenient things about webinars is that you can also watch them on your own time as they are generally available on the organization’s website a few days after the live event. In February at Cafe Fairfax we will learn how to access podcasts and webinars, so if you’re not sure what to do, I hope you’ll join us!

From Parkinson Voice Project (PVP)
Optimal Nutrition for Living Well with Parkinson’s
Saturday, January 12th, at 10:30am (CT) 11:30 (EST)
This event will be streamed live on the Parkinson Voice Project website and Facebook page. A recording of this lecture will also be available on their website by January 18th.
Lecture Description:
This presentation explains common Parkinson’s changes in the GI tract, how a reduced sense of smell and taste can impact appetite, and prudent choices of over-the-counter nutritional supplements. Scheduling medications for optimal absorption, minimizing swallowing problems, and managing constipation will also be discussed.
Click here for more information about the presentation and speaker, and to register!

From American Parkinson Disease Association (APDA)
Healthy Minds, Addressing Your Mental Health
This webcast is an archive of the live web/teleconference education program that was held on December 18, 2018. To view the webcast click here.
Managing Your Symptoms
Tuesday, January 29, 2019, 1:00 PM – 2:00 PM ET
Speaker: David G. Standaert, MD, PhD
To view the webcast click here.

Cafe Fairfax . . .
. . .  is next Wednesday! Lindsey will be talking with us about Music and Memory. After our cafe, I highly recommend that you stay to hear an interesting talk about Normal Aging Versus Dementia at 1:00 pm (part of their Classes for Caregivers series). It’s in the same room where we have our cafe, and you might want to bring some lunch to munch on in between activities. I’ve heard this talk before and found it comforting to learn how the reason we forget things isn’t always because of dementia. We can forget things when we’re inattentive or distracted, too. You’ll find more information on our Cafes page.

Hope to see you out and about again soon! Maybe next Wednesday at Cafe Fairfax?


Happy New Year!

Happy New Year

This is a really exciting time of the year as we are busy organizing events for 2019. At our cafes we’ll have some new topics to talk about, but we’ll also revisit some of our favorite topics like travel and hobbies. In January our conversation will be about music & memory. If you have suggestions for topics you’d like to discuss at our cafes or to learn more about at an educational event, please drop me a line at We’d love to hear from you!

Here are some events and resources you may want to check out. Don’t forget our Parkinson Social Network cafes – click here to go to our Cafes page for the whens and wheres!

Dance for PD®
Dance for PDDance for PD® has released 2 streamed classes again this month. Anyone can join these classes from the comfort of their home! These particular two classes are taught by David Leventhal and John Heginbotham, both Dance for PD® founding teachers.
Click here for David Leventhal’s class.
Click here for John Heginbotham’s class.

What’s happening at Insight Memory Care Center this month
Tuesday, January 8,  3:15-4:15pmInsight Memory Care Center
Research Discussion and Q&A (for early-stage individuals and their families)
Speaker: Brigid Reynolds, RN, MSN, NP
Wednesday, January 16,  1:00-3:00pm (after our Cafe Fairfax)
Classes for Caregivers: Normal Aging vs. Dementia
Speaker: Dr. Cynthia Sullivan
Click here to check out Insight’s January event calendar with these two events and much more!

Caregiver’s Corner Online
The January 2019 issue of Fairfax County’s Caregiver’s Corner Online just popped up in my inbox. It contains lots of local resources for caregivers, including some offered by Fairfax County. They also list other events in our community like . . . our Parkinson Social Network cafes!
Click here to read the January issue. The links won’t work but you can click here to subscribe and have it delivered to your inbox each month. You’ll find more information about Fairfax County services at

I hope you’re having a great start to the New Year and that we’ll see you out and about again soon!


Comfort & Caring

Thank you for helping us grow

At our cafes and other social events, people in our Parkinson community can connect with each other in a safe and supportive environment. They meet people with similar interests and experiences so there’s always lots to talk about and share. Parkinson’s brings us together, but we have so much more in common.

I feel we’re making a difference every time I hear . . .
I didn’t know there were so many other people dealing with the same things!

As Carol says so beautifully . . .

I feel as if I have found a new home and a new family
in which I find comfort and care with our friends
in the Parkinson’s Social Network.

With your support we can organize more events that welcome caregivers and Parkinson people to our family, and continue our efforts to provide comfort and care to people like Carol.

It’s easy to donate!

Click here or on this button below:Donate to Parkinson Social Network

You can also send your check made payable to “Parkinson Social Network” to:

Parkinson Social Network
12801 Point Pleasant Drive
Fairfax VA 22033-3216

And you can support PSN when you shop on Amazon!
When you shop on AmazonSmile, 0.5% of the price of eligible purchases will be donated to PSN.
Click here to connect with AmazonSmile and designate Parkinson Social Network as your favorite charity.

Please share our with your family and friends so we can continue to help people touched by Parkinson’s to feel empowered to make the most of life with Parkinson’s.

We are so grateful for the generosity
of our local Parkinson community.
Thank you!


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!


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