2 Cafes in One Week and More!

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Virginia Encore Chorales Concert in Reston
Last Friday, some friends and I attended this free concert at the United Christian Parish. We wanted to support another friend from our support group who was performing, and were delighted to discover that we knew someone else also in the chorale. Everyone enjoyed listening to the performance and joining them in singing some of the songs. A recording was made so if you’d like to see it you can click here to watch it.

The audience was encouraged to “Come sing with us!” and that means you, too! The only qualification to join Encore is to be over 55 years of age. There are no auditions and you don’t have to be an experienced singer. I could go into all the benefits for your voice and lungs, but as someone observed last night, there were smiles on everyone’s faces because singing brings you joy. As there aren’t any chorales specifically for people living with Parkinson’s here in Northern Virginia at this time, you might want to check out the Encore website (click here) and find a chorale near you. There are quite a few.

If you’re thinking that you can’t sing when you’re living with Parkinson’s, please watch and listen to this beautiful performance by people with Parkinson’s from all over the world when they gathered together at the World Parkinson’s Congress in 2016. Click here for the YouTube video.

Cafe Alexandria
We were delighted to welcome Susan Dietrich from the American Parkinson Disease Association (APDA) at UVA in Charlottesville to our cafe. APDA is one of several national Parkinson organizations and we were keen to learn more about it. Susan told us that APDA is the largest grassroots organization for Parkinson’s, and was founded in 1961 to Ease the Burden, Find the Cure. On their website at www.apdaparkinson.org you’ll find some great resources for webinars, publications, videos, newsletters and more.

Susan told us about a couple of events that might be of interest to you.

16th Annual Parkinson’s Disease Ice Cream Social (free)
Saturday, June 9, at 12:30 pm

Where: Berea Christian School,
1351 Garber’s Church Road,
Harrisonburg, VA
Speaker: Emily Peron, PharmD, MS; Asst. Professor; VCU School of pharmacy.
Topic: How to make the Most of Meds
Refreshments will include hand-dipped ice cream, homemade cobblers, ham sandwiches, chips, sweet tea, and lemonade.
We have it on good authority that the cobbler is AMAZING as is the ice cream. It would be a lovely day trip outing and you might see some familiar faces!
Please RSVP by May 26th 540-810-5210 or conniesuer@verizon.net
There’s another event in Roanoke on June 1st and you’ll find it on our
Community Events page.

Yesterday, Susan sent me a link to a very different website that I’m having fun checking out. Please don’t be put off by the name, but it’s www.getold.com. Their tagline is Increase Your Life Expectancy.

Cafe Ashburn
Margie Comerford, Speech-Language Pathologist at INOVA Loudoun Hospital visited us this month. She led us in some fun activities to challenge our brains and voices, and shared ideas so we could continue the fun. We played games like Scattergories, and Taboo. Other ideas we talked were the games Mastermind and Trivial Pursuit, and apps and books for logic puzzles. Margie suggested we could find the games at thrift shops and yard sales, and that when it came to trivia games, we might prefer the older versions.
On a more serious note, we learned that cognition is a combination of memory, attention, executive function and problem solving.
* Executive function is the ability to make decisions in a timely fashion, find mistakes and fix them.
* The ability to problem solve is built from memory, attention and executive function.
Margie also leads a Communications Club on Mondays from 11:00 am – 12 noon in the Patient Education Room at Inova Loudoun.
You can contact Margie for more information about speech therapy and communications clubs at
(703)858-6390 or by email Margie.Comerford@inova.org

Fair Oaks Parkinson’s Support Group Meets Tomorrow
Saturday, May 26 from 10:00 to 12 noon
Where? Sunrise at Fair Oaks
3750 Joseph Siewick Dr, Fairfax, Virginia, 22033
Speaker is John Lam, a gentleman who has been living with Parkinson’s for 35 years. He has a very inspiring message to share with us! All are welcome.

Hope to see you out and about soon! Remember to check out the Community Events page of our website!

email: Sonia@ParkinsonSocialNetwork.org

Nice weather for a duck

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It’s raining, it’s pouring, there are ducks on the front lawn?!! I’m so glad I took a photo of this feathery fellow who was catching up to his mates this morning or I would have thought I was seeing things. We’ve lived here for 13 years and this is the first duck I’ve ever seen on our lot. I think they were headed for The Swamp – also known as our backyard.

Cafe Fairfax 
We had a very informative discussion with Dr. John Dresely, O.D. FCOVD when he visited us on Wednesday to talk about Parkinson’s Disease: Effect on Vision. We learned that people with Parkinson’s can experience dry eyes, blephartitis (a low-grade infection of the eyelid), decreased color vision (usually with blues and yellows), visual hallucinations, spasm or weakness of the eyelids and about 14% can experience double vision. When we look at something we’re using 80% of the brain because it’s not just for what we see, but the language we use to describe what we’re seeing, and how the brain interprets other things like color. Dr. Dresely brought along some of his “toys”, such as glasses to demonstrate how vision can affect your balance, and cards that show how difficult it is to read and remember when the eyes aren’t working together well. There were lots of questions and we appreciated his easy to understand answers.

Caregiver Class at Insight Memory Care Center
Along with a couple of other ladies who attended Cafe Fairfax, I stayed on to hear Colleen Walker talk about Activities of Daily Living Success! It was great to see how the participants helped each other. For instance, women in the group suggested products for a husband to help his wife remove her makeup, while a couple of gentlemen explained the shaving process to the wives so they could make it a less stressful experience for their husbands. Lindsey, Director of Education and Outreach at Insight, did a marvelous job of finding many of the products we discussed, displaying them on the monitor so we could all see. We learned that you can find almost anything on Amazon, and that Home Depot has a Health & Wellness section on its website to help people age in place. For adaptive clothing Buck and Buck (We make dressing easier) was suggested.

There’s a new PD Support Group in Alexandria at Paul Spring
Tuesday May 22 at 1:00 pm
Where: Paul Spring Independent & Assisted Living Community
7116 Fort Hunt Rd, Alexandria, VA 22307
Contact: Alexandra Woodman Johnson
Ajohnson@olddominionhomecare.com or (703) 772-0887
Alexandra was asked by residents at Paul Spring to start a support group there, but they want you to know that anyone touched by Parkinson’s is welcome.

Cafes next week
You have your choice of joining us at two cafes next week! We’ll be in Alexandria on Monday and Ashburn on Wednesday. I’m looking forward to introducing you to Susan Dietrich from APDA who is visiting Cafe Alexandria, and Margie Comerford, SLP, who will be guiding us through some speech and cognition activities at Cafe Ashburn.

Our hosts at both locations are offering us a free light lunch, so please RSVP to help us with planning. There’s more information about our cafes on our cafes page.

Hope to see you out and about soon!

World Parkinson’s Day – a month later

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Can you believe that World Parkinson’s Day was only a month ago today? I subscribe to a newsletter from the EPDA (European Parkinson’s Disease Association) and this morning in their latest issue they reported on the #UniteForParkinsons campaign. Their purpose was to “unite and mobilise the global Parkinson’s community, making a positive difference to the lives of people with Parkinson’s”. Also from their newsletter, here are some of the results:
“•    more than 8 million people reached around the world via social media
•    nearly 900,000 social media engagements
•    nearly 90,000 visits to uniteforparkinsons.org from 199 countries
•    nearly 18,000 views of the #UniteForParkinsons promotional film
•    more than 17,000 hashtag uses from 97 countries hashtag trending on 11 April.”
(More details on their website at https://uniteforparkinsons.org/)

Very impressive! And exciting to see how the worldwide Parkinson community came together to shine a spotlight on Parkinson’s and increase awareness. In a recent media release by Parkinson’s Australia they wrote, “Parkinson’s Australia is the national peak body and charity representing more than 80,000 Australians living with Parkinson’s. We advocate for the needs of the 800,000 people living with Parkinson’s, their families and carers.” The way I read read this, for every person living with Parkinson’s there are at least 10 people who care about them and want to help them live a happy and fulfilling life. That’s a lot of love and support!

Fun with More Gadgets & Gizmos at Cafe McLean
Michelle Scott, Caregiver Specialist with the Fairfax Area Agency on Aging visited us on Wednesday. You may recall that Michelle visited Cafe Fairfax in April with her wonderful bag full of gadgets and gizmos. I’m working on a page for our website to share them with you and I’ll be sure to let you know when it’s ready. In the meantime, if you have any items that you’ve found helpful, please send me a photo and brief description and I’ll include them. I’ve had some interesting things sent to me already! We also enjoyed a lovely lunch courtesy of the generous folk at Lewinsville Retirement Residence. We hope you can join us at our next Cafe McLean on June 13!

Parkinson’s Foundation – Moving Day® DC – Saturday, June 2
Gary, who leads the support group in Ashburn, forwarded an email to his mailing list from Anna who was diagnosed with Parkinson’s 11 years ago. I’ve included her message below so you can read about the event and her request for sponsorship for her Rock Steady Boxing NoVa team. There’s more on her team webpage here.
We share a wide variety of resources from Parkinson’s Foundation at our cafe’s and other events. My personal favorite is their Parkinson’s Disease Fact Sheet – so handy for explaining Parkinson’s, particularly to medical professionals. If you’d like to participate in Moving Day® DC, more information about this event can be found here, on their website.

Insight Memory Care Center is really hopping!
Insight hosts our Cafe Fairfax on the 3rd Wednesday each month. They also offer free workshops and classes for caregivers that many of us have found helpful, not only those with a loved one living with dementia.
• On Tuesday, May 15th from 10:00 am – 12 noon we hope to see you at Cafe Fairfax when our visitor will be Dr. Dresely, a Developmental and Behavioral Optometrist who will talk about how Parkinson’s can affect the entire visual process. He will bring handouts, answer questions, and lead us through a couple of fun vision therapy demonstrations. Please click here to RSVP.
• On Tuesday, May 15th from 3:30 pm – 5:30 pm you can join in and Celebrate @ Insight!
• On Wednesday, May 16, after Cafe Fairfax, Colleen Walker will be talking about Activities of Daily Living Success! and how you can make each day more successful. If you’re caring for a loved one at home, come and learn tips and tricks for providing hands-on care for eating, dressing, bathing, hygiene and toileting.
• On Wednesday, May 30 from 10:00 – 11:30 am the topic is Connecting through Creativity: Art Therapy with Crista L. Kostenko, ATR-BC, LCPAT.
• On Saturday, June 9 from 1:00 – 2:30 pm there’s an interactive class for caregivers called Movement & Meditation: An Interactive Workshop with Cynthia Bialek, RYT500
For more information about these events and more, please check out their website, click here to view their events calendar, or contact Lindsey Vajpeyi, Director of Education and Outreach at 703-270-0043 or lindsey.vajpeyi@insightmcc.org

I’ve added a new event to the Community Events page of our website – Safe Driving as You Age, organized by NV Rides. It’s on Thursday, May 17, from 9:30 am-1:30 pm and includes a free lunch! You’ll find more community events on the same page, in order by date.

Hope to see you Out and About soon!


May is Older Americans Month!

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Sharing ideas to get out and about, and stay safe in our homes . . .

A great time to check out the Fairfax County Creative Aging Festival
There’s a month-long celebration of the visual, literary and performing arts and the profound impact they have on older adults happening now in Fairfax. Senior centers throughout the county will be hosting demonstrations, performances and interactive classes involving writing, drawing, painting, crafting, music and dance. A complete schedule of activities is listed here. Events will take place all around Fairfax County, including at Lewinsville Retirement Residence, our hosts for Cafe McLean. There’s bound to be an event near you! Please be sure to contact the host location for additional details and information about specific activities.

If you’re wondering where to go for lunch on Tuesday, May 8 at 11:30 am ~
the Fair Oaks Support Group Lunch Bunch is meeting again.
With a new day of the week and time, they’ll be at:
Silver Diner, 12251 Fair Lakes Pkwy, Fairfax, VA 22033
All are welcome!

On Wednesday, May 9 from 11:00 am – 1:00 pm we’ll be at Cafe McLean . . . 
. . . enjoying a light lunch and a visit by Michelle Smith, Caregiver Specialist with the Fairfax Area Agency on Aging. Michelle will bring all kinds of fascinating things to help make our daily lives just a little bit easier to manage.
Click here for more information about our cafe locations, and click here to RSVP!

To subscribe to Out & About with Parkinson’s our weekly e-newsletter with updates and reminders about our cafes and other events click here.

Rebuilding Together
I read about this organization in our local Greenbriar Flyer last week. One of our neighbors wrote about her experience when several people came to repair a number of issues in her home and install grab bars. She also wanted to spread the word how “Rebuilding Together provides home repairs at no charge for low- and moderate-income homeowners, with priority to seniors, people with disabilities, veterans and families with children in the Arlington, Fairfax and Falls church area. To apply or refer a friend or neighbor, go to www.rebuildingtogether-aff.org or call 703-528-1999.”

Fair Oaks Support Group
At our April support group meeting we enjoyed a scrumptious brunch laid out for us by our hosts at Sunrise at Fair Oaks in recognition of Parkinson’s Awareness Month. Several friends shared their positive experiences with local resources with us.

1) After researching several personal emergency response systems one friend settled on the Philips Lifeline Medical Alert System through the Virginia Hospital Center. It offers fall detection, and is GPS enabled. Hospital staff will install the equipment in your home and explain how it works. I found some information on their website here.

2) Another friend told us about The InovaCares for Seniors™ PACE® Program (Program of All-inclusive Care for the Elderly). PACE® is a national program providing comprehensive, personalized care – medical, social services, day care – that makes it possible for people who require nursing home level of care to remain in their homes. It can be expensive, but includes medical care (doctors, therapy, etc.), transport to and from doctor appointments, durable medical equipment, and medications. More information is on their website here.

3) Fans of Insight Memory Care Center, our hosts for Cafe Fairfax, then spoke enthusiastically about the many programs Insight offers including support groups, Memory Cafes, day center, workshops, classes, and their Reconnections program – even an annual cruise! More information on their website here.

UPDATE: Fairfax County Scam Jam
On Saturday, April 28, AARP Virginia and Fairfax County Government brought together top experts and law enforcement officials to present information on avoiding scams. In case you missed it, it will be replayed on Channel 16 in May, Sundays at 1:00 p.m. and Thursdays at 1:30 p.m.

Other Events
You can check out these and previously mentioned events on our Community Events page, in order by date.

email: Sonia@ParkinsonSocialNetwork.org

As Parkinson’s Awareness Month 2018 comes to a close

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This has been a busy month! But we enjoyed welcoming new friends to our cafes, both new ones and those that were already established. We’re working on programs for the coming months and we’ll keep you updated both here on our website and through our e-newsletter, Out & About with Parkinson’s. You can sign up for it at the top of the sidebar on the right hand side of this page!

Cafe Ashburn
We had a lovely turn out for our new day of the month and time for Cafe Ashburn on Wednesday. We munched on sandwiches and cookies provided by our hosts, the Tribute at One Loudoun, and talked about all kinds of things to make living with Parkinson’s just a little bit easier. A couple of people sent me links for their tips to share with you:

1. If you’re having trouble staying upright in a chair, for instance at the dinner table, sit on a triangle shaped foam cushion. The deep side should be at the front of the chair to lift your knees and that keeps you from sliding! You can have the triangle cushion custom made – click here for the website.

2. At the presentation last Thursday by Doctors Rogers and Falconer, they mentioned that you can work with some of the pharmaceutical companies and they will set up a program for your medications that is more cost effective. Here are 3 links that were sent to me to share with you by a gentleman who is using them and benefiting from substantial discounts: Rytary, Mirapex ER, Amantadine 

Andy Butler comes to town
A world traveler for Parkinson’s from the U.K. visited Northern Virginia this week on his way to the Parkinson’s Unity Walk in New York City on Saturday, April 28. Andy is the founder of Parkinson’s People, an independent online community on Facebook that connects people from all over the world. Click here to read an article about it on Parkinson’s Life. Andy is also involved with Radio Parkies. There’s another article about Andy on the Parkinson’s Women page – click here to read.
Come back and visit us again soon Andy!


Out & About for Parkinson’s Awareness Month

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This week has been a busy week for the Parkinson Social Network! It was lots of fun though, and I really enjoyed meeting people from all over Northern Virginia.

Our first Cafe Alexandria!

Cafe Alexandria 
On Monday, we launched Cafe Alexandria! Many thanks to our gracious hosts at Brandywine Living in Alexandria – not just for hosting us, but also for the wonderful welcome and delicious lunch! We had a lovely time getting to know each other including meeting several PD Buddies, and learning that some people who were meeting for the first time at our cafe also lived in the same neighborhoods. Alexandra from Old Dominion Home Care brought tulip shaped cookies covered with red icing (and wore a red top to match!) and talked about a new support group she is helping to organize at Paul Spring Retirement Community. We are aware of other people who are interested in starting support groups in Alexandria including groups for people contemplating DBS (Deep Brain Stimulation) or who have had the surgery, women with Parkinson’s, and caregivers. We hope they can join us at our next Cafe Alexandria on Monday, May 21, when we can talk about connecting people in the Parkinson’s community who live in Alexandria and surrounding areas.

Christi (Insight Memory Care Center) Sonia (Parkinson Social Network) and Lauren (Old Dominion Home Care)

Cafe Fairfax
On Wednesday, we recognized Parkinson’s Awareness Month at Cafe Fairfax. Thank you again to our wonderful hosts at Insight Memory Care Center!  And thank you, too, to Lauren with Old Dominion Home Care for providing the yummy red velvet cake in the photo.

We were visited by Michelle Smith, Caregiver Specialist with the Fairfax Area Agency on Aging. Michelle brought all kinds of Gadgets and Gizmos for a kind of show and tell. We’re working on a new page on our website to share some of her ideas. We’d also love to hear from you . . . Do you have any gadgets and gizmos that you find helpful with your daily tasks? Send them to us at Sonia@ParkinsonSocialNetwork.org and we’ll include them.

Inova Movement Disorder Specialists presentation
Doctors Rogers and Falconer gave their presentation on Advancements in the Treatment of Parkinson’s Disease: Neurorestoration and Beyond at Lansdowne Resort and Spa on Thursday night. I’ve heard this presentation several times now, but I always learn something new. In fact, the PowerPoint that is posted on their website at www.inova.org/movement-disorders-program will be updated in the next couple of weeks to reflect changes in the past 6 months. An important part of their message is that there have been so many advancements in treatment of PD in the past 5 years, and there is much more that is being worked on to help people feel better and experience a better quality of life with Parkinson’s.

Amazon Echo/Voice Assistance
Tuesday afternoon I attended a presentation at Waltonwood in Ashburn to learn more about Alexa and Amazon Echo. Paul Burden is the founder of Our Voice, a company dedicated to bringing voice technology to seniors, the blind and low vision community and those dealing with neurological issues. We learned how by just speaking to Alexa, you can have books read to you, play music, place and receive phone calls, alert family and friends when in distress, search the Internet, shop, and so much more. Paul helps people get set up with this technology and understand the features. More information at www.OurVoice.net.

As a reminder . . . Join us next Wednesday for Cafe Ashburn!
We’re meeting on
   a new day of the month – the fourth Wednesday,
      at a new time – from 11:00 am – 1:00 pm,
         with a new menu – lunch!
Click here for more details. Please help us with planning and RSVP, particularly for events where lunch is being offered. It really helps!


Today is World Parkinson’s Day

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We’re shining a spotlight on Parkinson’s today
but also on all of our amazing friends, touched by this disease,
who empower each other to make the most of life with Parkinson’s.

If you’re connected to social media,
keep an eye out for what people all over the world
are posting under the banner #UniteForParkinsons!