Parkinson Social Network

Parkinson’s and Poetry

April is Parkinson’s Awareness and National Poetry Month!
This morning I remembered something I learned a few years ago –  that Parkinson’s brings out the creativity in people. When I looked on Google, I found a number of articles about it, including this one from Parkinson’s Life – Why are people with Parkinson’s more creative? In our Parkinson community I know people who are artists, photographers and authors. I’ve also read some very personal and moving poems written by people with Parkinson’s. For the past couple of years in South Australia, I’ve attended a combined art and poetry exhibit held by Parkinson’s SA. So with all these thoughts running through my mind (it gets kind of crowded in there sometimes!), I am delighted to share a couple of messages about poetry from Parkinson’s Life, in Europe, and the Northwest Parkinson’s Foundation based in Seattle.

I’m looking forward to reading the submissions to both websites! Are you a poet? Or would like try writing poetry? If you’d like to share, please send your poems to, and I can share them through our newsletter and website.

Clinton recently visited our cafes to talk with us about this latest study.
Volunteers Needed for Movement Study
This 12-week study is on the effects of multi-modal exercise training on walking economy in individuals with Parkinson’s disease. You can arrange the times that best suits you and parking will be free.
At: Rehabilitation Science Laboratory
Peterson Family Health Science Hall
George Mason University, Fairfax Campus
For information please contact: Andrew Pechstein at
or Clinton Wutzke at or (703) 993-1903

APDA Optimism Walk
Saturday, April 13, 9:00 am – 12 noon
Neptune Park (31st and the Boardwalk) ,Virginia Beach
The Optimism Walk is the major Hampton Roads event of the APDA “American Parkinson’s Optimism” education and fundraising activities. The primary focus of the Optimism Walk is to educate the community about Parkinson Disease and present local resources to support people with Parkinson Disease and their care partners, family, friends, and the community at large.
• Registration is free and open to the public; donations are accepted
• Parkinson Disease Education Pavilion – more than 25 PD education exhibits and information
• Therapist led movement, exercise demonstration and activities, and games for people with Parkinson Disease and attendee participation
• “Stroll” for all activity levels – 9 blocks along the Virginia Beach oceanfront
For details on setting up your team or joining one,  call 757-495-3062 or

I learned about this workshop this week. It’s a joint effort of Inova Mt. Vernon Hospital and AARP. If you attend this event, I’d love to hear your feedback!
Lunch and Learn: Taking the Health Care Journey: Putting the Pieces Together
Wednesday, Apr 24, 12 noon to 1:30pm
Inova Mount Vernon Hospital
2501 Parkers Lane, 2nd Floor, Engh Conference Center, Alexandria

In today’s world, there are numerous health care components one must consider upon returning home from the hospital. In this session, you’ll learn about the different pieces of the health care journey: from rehabilitation to home health care to hospice services to care management and everything in between. Our panel of experts will help you understand what you need to know about the many pieces of the health care journey.

Space is limited each month to the first 50 respondents; register today!
These events are open to the public and all are welcome.
The fee to cover lunch: $5 cash or check only – payable at the door.
No products or services will be sold or promoted at these events.
Click here for more information.

Dance for PD® released it’s streamed class for March
Anyone can join these classes from the comfort of their home! This particular class is taught by Sarah Marcus. Click here to view and participate in Sarah’s class. There’s a new class available every month, usually with a different teacher, too.

At our cafes in March
Maria Spetalnik from Conquer the Clutter visited all three of our cafes this month. Thank you, Maria for all your stories and great advice! In case you missed her, here are some of the things we talked about . . .

Organizing your home
–  Keep items at a height that makes it easy to access them – between your shoulders and your knees.
–  Pantry shelves that are not deep are good because it’s easier to access items. If you have deep shelves, use long, skinny trays to sort items.

What do we do with all this paper?!
–  Be selective about what you take home from health fairs, home shows, etc.
–  Purge newspapers and magazines regularly.

–  To sort your mail, have two piles – trash and keep. Get rid of junk mail before it lands on your dining table. What to do with mail that you’re not sure about? Keep legal, financial, and medical mail in a separate file so you can follow-up with the experts later.
–  To shred important documents, use a cross-cut shredder. The smaller the bits the better! Fairfax county will shred 4 boxes for free (to residents) and even take them out of your car for you. Click here for more information on the Fairfax County website.

How about medications?
–  The safest way to dispose of medications is to drop them off at your local police station. Please keep them in their original bottles.
–  You can cover up personal information on the bottle with a blackout pen. Be sure to blackout the prescription number.
–  For more information, click here to check out the Safe Disposal of Medicines page on the Fairfax County website.

–  The IRS does not call. They send letters by the U.S. Postal Service.
–  Door to door solicitation. Ask for a permit because door to door salesmen are required by law to carry one. Most don’t, especially those that say they are working on a job down the street.

Making your home safe
–  Beware of throw rugs because they can be a fall hazard. Should you trip and fall it can change your life in an instant, and not for the better. Is it really worth it?
–  Install grab bars in your bathroom. To have them installed correctly, you can contact a Certified Aging in Place Specialist (CAPS), who can make additional suggestions that will help keep you safe in your home.

–  Start downsizing early. The more you can do now, the less stressful it will be for your children. It is much more difficult for other family members to sort through everything for you.
–  If your kids say they don’t want something – believe them!
–  Antique furniture, china, and silver, doesn’t have the value it used to have. You may prefer to donate these items. The only furniture that is currently selling is mid-century modern – from the 60’s and 70’s.
–  Choose the charities you want to give to that have meaning to you. We are more inclined to donate items when we feel a connection or can picture where our items are going. For example, donating old blankets to an animal shelter, or donating suits to a charity that helps people find work, so they can look and feel good when they go for an interview. A couple of charities mentioned were FACETS and Habitat for Humanity ReStores.

Maria’s contact info:
Maria is happy to answer your questions. You can reach her at or at (703) 574-113.

*New* location for our Cafe Ashburn!
Beginning April 24, we will have a new location for cafe in Ashburn. Not far from our previous location, we are now at:
Waltonwood at Ashburn
44141 Russell Branch Pkwy, Ashburn, VA 20147   map
We will still partake of a yummy lunch (with donuts!) and meet at the same time (11:00 am – 1:00 pm)

And last but not least, if you’re interested in the Parkinson’s dance class we’re organizing in Reston, please let us know! This is more like a movement to music class and Katy can adapt the program to your needs so that everyone has a wonderful time. You can click here to read more about it. If you are interested, even if you’re not sure, please contact me. We’ll contact people to work out dates and times soon.

April is . . . Parkinson’s Awareness Month!
I’ll be sending out a separate post listing what’s happening in Northern Virginia. Hope to see you Out & About in April!


The Joy of Dance

When people join my exercise classes I always ask them about their goals. Years ago, my first client living with Parkinson’s told me her goal was to dance the foxtrot again. Ruth was living in a retirement community where Saturday night was dance night for the residents, and she was not happy about being a wallflower. Six Saturdays after we began Ruth’s personal training program, improving her strength and endurance, she was up on her feet and dancing! The smile on her face as she told me about it just lit up the room. Oh, and Ruth was in her late 80’s!

Ruth’s determined spirit showed itself time and again, and inspires me still. This week I connected with Katy Eurich, a professional dancer who is keen to start a dance class for Parkinson’s in our area. As a full-time caregiver to her father, who lived with Parkinson’s for 18 years, she understands what it is like to live with Parkinson’s.

Now I’m sure you can imagine how excited I am to announce . . .
We are organizing a new Parkinson’s dance class in Reston!
I’m looking forward to seeing smiles on many more faces. Here’s a message from Katy, describing her class . . .

This will be a movement class catered to those with Parkinson’s (and related conditions). It is designed to encourage spatial awareness, move large, stretch, and strengthen. With the use of multi-genre music, participants engage in music appreciation, recognizing rhythms and even singing. This is a class for all levels, and is adaptable based on an individual’s needs. All are welcome!  Bringing a partner is encouraged but not necessary. Our class will meet at a beautiful professional dance studio with easy access from parking to studio entrance. Join us as we spend an hour together discovering the joy that music, movement and relationships offer!
Class location: 267 Sunset Hills Business Park, Herndon, Va.
A reasonable fee will be charged for this class (one fee per couple) and will be determined at a later date.
*** If you are at all interested in joining this class, please contact Sonia at: or (571) 286-5000.
As soon as we have an idea of who is interested, we’ll get in touch and work out the details!

We have a new addition to the Keep Moving page on our website!
Interactive Metronome Training
When: Availability Monday-Saturday
Where: Fairfax City
Contact: Mary Schlesinger
Email: / Phone: 703-934-4785
Cost: Assessment $50 / One-on-One Sessions $150/Hr
Interactive Metronome (IM) can help improve balance, coordination, and gait. And, in turn, reduce fall risk. And that’s only part of what IM training can do. The 1.5 hour assessment is a great introduction to this powerful technology. Learn what IM is all about, ask questions, set goals, work through the assessment exercises, and see how you score (at the millisecond level). Accommodations can be made for wheel chairs and walkers.

This next announcement about the Scam Jam comes from the latest issue of the Golden Gazette, a free monthly publication from Fairfax County.
There was also an interesting article about imposter scams, and April events like the Aging and Wellness Fair, 50+ Employment Expo, and the Scam Jam below. More events such as smart driver courses, Operation Medicine Cabinet Cleanout (April 27), and document shredding events were featured. There was also information about the latest podcasts, including Start a Conversation about Parkinson’s, and programs on channel 16. Even a Caregiver Corner!
Don’t miss out having the Golden Gazette pop into your inbox every month!
Click here to subscribe.

We’ve been talking about scams and document shredding with Maria from Conquer the Clutter at our cafes this month.
Scam Jam: A Free Fraud Fighting Event
Saturday, April 27, 9:00 am – 1:00 pm
At: Fairfax County Government Center, 12000 Government Center Pkwy., Fairfax
Presentations by Susan Hogan, consumer investigative report with NBC4 and Elisabeth Leamy, consumer columnist with the Washington Post.
Light refreshments and a lunch will be served. In addition, there will be a shredding truck onsite from 8:00 am until noon unless the truck fills up before then.
Register and find out more at or call 1-877-926-8300

And more from AARP . . .
AARP CAREversations
Join us for this lightly facilitated conversation about family caregiving.
Thursday, March 28 from 6:00 – 8:00 p.m.
Osteria da Nino, 2900 S Quincy Street, Arlington, VA 22206

• Discover five key steps to aid you in your caregiving journey.
• Connect and exchange tips and ideas with fellow caregivers.
• Explore local caregiving resources available in your community.
Enjoy light refreshments!
Registration is kindly requested, click here to register.
For questions about this workshop call 1-866-740-6947.

Slip on your dancing shoes in anticipation of our new class!
Dance for Dementia
Thursday, April 4 from 5:00 – 8:30 pm
Where? NOVA Adult Day Care Center
45940 Horseshoe Dr Suite 100, Sterling, VA 20166
Join us for appetizers, live music, dancing, and a silent auction!
Tickets are $45 in advance and $55 at the door.
Get your tickets today at
Proceeds from Dancing for Dementia will benefit Dementia Friendly America Herndon, a program of Insight Memory Care Center!

Caregiver BootcampThis is an excellent educational event put on by Insight a couple of times each year. For this particular one, Insight is offering a workshop on Veterans Benefits at our request following our discussions at our cafes a few months ago. I hope to see you there!
Caregiver Bootcamp – reminder
Saturday, April 6, 9:30 am to 3:00 pm
Where? Insight Memory Care Center
Insight offers the Caregiver Bootcamp to help you learn more about essential caregiving topics, all in one place! Come and learn from experts in their fields and gain knowledge on the basics you need to know as a caregiver. Topics for the day include Dementia 101 & Clinical Trials, Understanding Veterans Benefits, Practical Tools for Caregivers, and A Person-Centered Approach. Read more online about our topics and speakers!

Fair Oaks Parkinson’s Support Group
Saturday, March 23rd from 10 am – noon
Where? Sunrise Senior Living at Fair Oaks
3750 Joseph Siewick Dr., Fairfax
In the 3rd floor Library (room to the left as you step out of the elevator)
Open to anyone living with Parkinson’s, their families and friends. All are welcome!

Hope to see you out and about again soon! Next week we’ll be at Cafe Ashburn with Maria from Conquer the Clutter joining us. Will we see you there?


Parkinson’s Podcast and Presentations

Sonia with host Jim Person

This has been a very busy week! Here’s the news about what we’ve been doing and are planning to do for April – Parkinson’s Awareness month!

I hope you can come to this event featuring PSN board members Karl and Angela Robb, as well as Inova Movement Disorder Specialist, Dr. Drew Falconer.
A Journey of Living Well with Parkinson’s
Thursday, April 11, 6:00 – 7:30 pm  **Save the date!**
At: 12052 N Shore Drive, Reston, VA 20190
Presented by Karl and Angela Robb, author of A Soft Voice in a Noisy World who has lived with Parkinson’s disease for thirty years, and his wife/carepartner, respectively; and Dr. Falconer, co-director of the Movement Disorder Program, INOVA Hospital.
Join us as Karl shares his positive attitude about living with Parkinson’s, and learn about the latest medical advancements from Dr. Falconer.
Free and open to the public. Light refreshments served.
RSVP by April 1. Space is limited!
Call 703-834-9800 or email

I was excited to be invited to do another podcast for Fairfax 50+ this week!
That’s me with host Jim Person in the photo above.

Parkinson’s Social Network’s latest podcast!
Fairfax 50+ is a podcast series featuring discussions on issues, services and activities of interest to residents 50 and over. On this edition, host Jim Person talks with me about Parkinson’s Awareness Month in April. This year’s theme is, “Start a Conversation.”
Click here to hear the podcast.
You can find the county’s older adult services, recreation and community engagement opportunities by calling 703-324-7948, TTY 711, Monday – Friday, or by going online to When you’re online, be sure to subscribe to the monthly Golden Gazette newspaper, Caregivers Corner Online e-newsletter as well as Fairfax 50+ E-News. To listen to other county podcasts, visit

If you’re not sure what to do with these podcast and webinar announcements, Grace Lynch and Jim Person will be joining our Cafe Fairfax in May to explain how to access them. They were going to join us in February, but the weather got in the way so we’ve arranged another date with them.
We’re very grateful for all that Grace is doing to help us get the word out about our Parkinson Social Network!

More from Fairfax County for caregivers
Fairfax Caregiver Seminar Consortium offers free webinars . . .
. . . for family caregivers, including topics such as:
–  Legal Tools for Caregivers
–  Just Add More Heart: Self-Care Techniques for the Caregiver
–  Diagnosis: Dementia…Now What?
–  Resources for Caregivers, Older Adults and Adults with Disabilities
–  Best Practices When You Are Chosen to Manage Someone Else’s Money
–  Medicare 101
–  Caregiver Considerations
Click here for more information and to register online.

We’re interested in hearing from people who are would like to participate in our new 

Side by Side Support Groups
For those with Parkinson’s and those who care

When? Beginning April 10, the second Wednesday of each month
Where? Virginia Hospital Center – Carlin Springs campus
Organizers? This is a joint effort of your Parkinson Social Network and Old Dominion Home Care.
Two support groups, each in their own space next to each other:
–  For caregivers to share and learn from each other and
–   For people with Parkinson’s to engage in group activities and share with each other

. . . And of course there’s more!

Parkinson’s Awareness Month
– Help Wanted for Outreach at Local Hospitals

on Monday, April 22 and Friday, April 26, from 11:00 am – 2:00 pm
–  We will be at Fair Oaks Hospital (Fairfax), in the front lobby by the cafeteria

on Monday, April 1, from 11:00 am – 2:00 pm
–  We will be at Virginia Hospital Center (Arlington), in front of the cafeteria

We’d love your help reaching out to people, and letting them know that they are not alone. You’ll also have the opportunity to talk with medical professionals to give them an understanding of what life with Parkinson’s is like. If you can’t stay the whole time, that’s ok. If you’d like to join us in this year’s outreach program, please email me at or call 571-286-5000.

I hope you’ll join us as we raise awareness about Parkinson’s!

Hope to see you out and about again soon! Next week we have 2 cafes – in Alexandria and Fairfax – with Maria from Conquer the Clutter joining us as well as Clinton Wutzke from GMU. Will we see you there?


Looking for something to do in April?

Looking for Something

This first announcement, Insight Memory Care Center’s (IMCC) Caregiver Bootcamp, is special to us because IMCC has arranged for someone to speak about Veteran’s Benefits at our request. I hope you will seriously consider attending this boot camp because they have arranged for some excellent speakers. Even if you do not have a loved one with dementia, I’m sure you’ll find this event helpful. I know some of our readers their own caregiver, and I encourage you to consider attending, too.

Caregiver Bootcamp
Saturday, April 6, 9:30 am to 3:00 pm

Join IMCC for a free special day-long training event covering many essential caregiving topics!
We know it can be hard as a busy caregiver to find all the information you need to best care for your loved one with dementia. Insight offers the Caregiver Bootcamp to help you learn more about essential caregiving topics, all in one place! Come and learn from experts in their fields and gain knowledge on the basics you need to know as a caregiver.
A continental breakfast and lunch will be provided free of charge! Thanks to Old Dominion Home Care and Potomac Place Assisted Living and Memory Care for sponsoring our meals.
Sessions Include:
*  Dementia 101 & Clinical Trials
*  Understanding Veterans Benefits
*  Practical Tools for Caregivers
*  A Person-Centered Approach
Where: Insight Memory Care Center (map)
RSVP: Click here to register online, or contact Lindsey Vajpeyi at
703-204-4664 or
Click here to download the flyer and share with your family and friends!

Here’s another free event with lots of good information. Some of the workshops I think might of interest to you, presented by speakers who may be familiar to you, are:
*  Aging in Place Is an Option
*  Better Brain Health:  Save Your Memory and Your Mind!
*  Clean Up Your Act: Downsizing and Decluttering
*  Caregiving:  A Shared Journey
*  Getting Out and About: A Transportation Toolkit
*  Words Matter:  Communicating with Loved Ones Experiencing Memory Loss

Northern Virginia Positive Aging and Wellness Fair
Monday, April 8, 2019 8:45 am – 4:00 pm

At: Fairfax County Government Center
12000 Government Center Parkway Fairfax, VA 22035
Keynote speaker is Pat Collins, News4 reporter. The fair is free and will feature 60+ local exhibitors, and speakers throughout the day.
You might also want to check out the Long Term Care Coordinating Council Technology table and learn how to:
• Navigate smart phones and tablets
• Find information online
• Tell if something is a scam
• Know what fake news looks like
• Do safe online shopping
• Keep your personal information safe
• Manage many passwords
Click here for more information about this fair and to register.

And now for some announcements specifically for our Parkinson community . . .

Medicare Coverage and Parkinson’s
Thank you, Gary, for sharing the link to this article, on the Davis Phinney Foundation website. Click here to read the article.

Become an Advocate for Research With the (National) Parkinson’s Foundation
The first step to serving as a Research Advocate is to apply for a spot at the four-day Learning Institute. At this training, participants will learn about Parkinson’s research and gain leadership and advocacy skills to confidently interact with researchers and the community. Next training: Minneapolis, MN, June 23-26, 2019. Click here for more information.

Pints for Parkinson'sThank you, Alec for organizing this event! Hope to see everyone there! 
Pints for Parkinson’s

Saturday April 27, 2019
1:00 – 5:00 pm

At: Tysons Biergarten
8346 Leesburg Pike, Tysons Corner
This event is hosted by Alec Langstein & Rock Steady Boxing NOVA
Come support family and friends, grab a beer, and help fight back against Parkinson’s disease. All donations and percentage of sales will be given to the local non-profit Parkinson Social Network who is committed to bringing together the Parkinson’s community of Northern Virginia to inform, inspire and unify those living with Parkinson’s.
Online Donations: – You can donate online at
Parking: – PLEASE read the parking information on the Tysons Biergarten website – There is free parking with validation in the parking garage next door!

If you are interested in participating and/or helping us organize this new support group concept, please contact me at or call 571-286-5000.
It will help us with planning to hear from you if you’re interested in participating, and to hear from you about what you’d like see in a program like this.

Side by Side Support Groups
             For those with Parkinson’s and those who care
When? Beginning April 10, the second Wednesday of each month
Where? Virginia Hospital Center – Carlin Springs campus
Organizers? This is a joint effort of your Parkinson Social Network and Old Dominion Home Care.
It will actually be two support groups – one for caregivers and one for Parkinson people – each in their own space next to each other. The one for Parkinson people will lean more toward activities and being interactive than the usual kind of support group.

Parkinson’s Awareness Month
– Help Wanted for Outreach at Local Hospitals

April is Parkinson’s Awareness Month! This year, Parkinson Social Network will have tables two local hospitals to raise awareness about Parkinson’s.
We will be at Fair Oaks Hospital (Fairfax), in the front lobby by the cafeteria
   on Monday, April 22 and Friday, April 26, from 11:00 am – 2:00 pm
We will be at Virginia Hospital Center (Arlington), in front of the cafeteria
   on Monday, April 1, from 11:00 am – 2:00 pm
Would you like to help us? We need people to chat with the people who approach our tables, and share our printed material about Parkinson’s. Sometimes it’s just a matter of listening to stories and letting people know that they are not alone. It’s also a good opportunity to talk with medical professionals to give them an understanding of what life with Parkinson’s is like. If you can’t stay the whole time, that’s ok.
If you’d like to join us in this year’s outreach program, please email me at or call 571-286-5000.

Hope to see you out and about again soon!


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