Parkinson Social Network

Working and Living with Parkinson’s

I subscribe to the European Parkinson’s Disease Association newsletters, and follow them through social media as well. (Above graphic courtesy of their Facebook page). This article caught my attention because of the seemingly growing number of people living with Parkinson’s who are still working. Their issues and needs are quite different from people who are retired, and highlights how living with Parkinson’s is so unique to each individual.
So for those of you who are working and living with Parkinson’s, this one’s for you.

What happens in your working life if you have Parkinson’s?
Click here to read the article that discusses these issues:
• Working with Parkinson’s
• When should I tell my employer and colleagues?
• Who can help and how can I help myself?
• Work and caring


Local news: Pickleball Over Parkinson’s?
Did you see this article in The Connection – a local newspaper? (Click here)
It’s about a local gentleman living with Parkinson’s, who along with his wife, plays pickleball regularly at an Arlington community center, as well as in tournaments. He is also competing in the Northern Virginia Senior Olympics. Way to go, Andy! Keep Moving!


2020 Caregiver Cruise with Insight Memory Care Center (IMCC)
When? February 20 – 29, 2020
Where? Departing Baltimore, 8-night trip to Nassau, CocoCay, Port Canaveral and Charleston
We know it can be difficult to travel when your loved one has memory impairment, but we all still need a vacation! Caregivers are welcome to come by yourself or with your loved one with early stage memory loss.
One cruiser shared:
“This turned out to be the happiest trip – vacation – I’ve ever had in my life… all the people were so much fun, I feel like everybody that’s on the cruise with us is now like one family.”
IMCC will provide support during excursions, and respite during days at sea. Personal care assistance cannot be provided by IMCC. IMCC can also help arrange for respite care at home, if needed. Interested? Click here to read more on their flyer.


Parkinson Social Network’s Annual Caregiver Appreciation Luncheon – November 9
We’ve made a lot of progress in our plans for this event in the past week and it’s really going to be something special! So to all you family care-givers and care-partners out there, I hope you can join us!
Click here to check out our web page for details, and RSVP today. We have limited seating and your early response will really help us with planning.

I hope this newsletter is helpful and we’ll see you Out & About soon! Will we see you at Cafe Ashburn? Susan Kousek from Balanced Spaces will visit us! Details on our cafes web page.

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

Caring for our Caregivers luncheon – November 9!

Our PSN Board of Directors is well into planning this special event for our caregivers. We would love your help and feedback to make this another happy event for caregivers. Please mark the date on your calendar, and drop me a line if you’d like to help!

Caring for our

Caring for our Caregivers

PSN’s 2nd Annual Caregiver Appreciation Luncheon

Saturday, November 9, 2019, 10:30 am – 1:30 pm
At: Insight Memory Care Center
3953 Pender Drive, Fairfax, VA 22030

In recognition of National Family Caregivers Month Parkinson Social Network is honoring family caregivers in our Parkinson’s community. You are invited to our second annual caregiver appreciation luncheon to relax, refresh and enjoy!

Featuring door prizes, coffee and donuts, and buffet luncheon.
Our keynote speaker will be Martha Brettschneider . . .
Mindfulness teacher, speaker, writer, and photographer, with a passion for inspiring and supporting mindful living.

If you need someone to care for your significant other, we have arranged activities and lunch in an adjacent room. To make arrangements for care, please register by Friday, October 25, 2019.
Please help us to make this a Very Special Event and register by October 25. Limited seating for this event, so don’t delay!

Questions? Please contact Sonia at Sonia@ParkinsonSocialNetwork.org or 571-286-5000. To register, please go to our website: https://parkinsonsocialnetwork.org/caring-for-our-caregivers


Thank you for the warm welcome from our friends who joined us at the monthly Manassas Support Team meeting on Saturday. I don’t know how we did it, but it looked like 45 people squeezed into the room! We were there to talk about how to Prepare for Your Care when you are in hospital, and share other local and national resources. If you’d like us to talk to your support group about hospitalization and Parkinson’s, please email Sonia: Sonia@ParkinsonSocialNetwork.org.

For those of you in the Fauquier county area, we learned about these classes at the Manassas support group meeting:
THRIVE: Special Focus Classes 
offered by the Allegro Community School of the Arts
These classes are meant as exercise classes to improve quality of life for older adults with limited mobility and/or specific neurological disorders such as Parkinson’s, Dementia, and Alzheimer’s. These classes are not offered/led as group therapy dance-movement, physical, music, and/or drama therapy sessions aimed at treatment and diagnosis. Volunteers are present in all classes to assist in standing, sitting, and serving as a helpful friend if needed. For safety and complete attention and care to all of our students, please be aware of the descriptions of each course to verify if you qualify for enrollment.
Classes that may be of interest to you include Dance for PD® and a community choir. For more information, click here to check out their website.

We also learned about a medical equipment loan closet through:
Hospice Support of Fauquier County
42 N 5th Street, Warrenton
Phone: (540) 347-5922
Click here to go to their web page.
You do not have to live in Fauquier County or require hospice support to borrow equipment from them.


Self-Compassion for Caregivers – a free webinar
Thursday, November 7, 2019, 7:00 pm 
(also will be recorded for viewing later)
For family and professional caregivers. By Janet Edmunson, M.Ed.
Caregivers are typically wonderful at caring for their loved one, but not so much at for caring for themselves. And caregivers tend to be hard on themselves when they don’t feel they are performing to their “ideal” standard for caregiving. When others make a mistake, caregivers tend to be more forgiving. But when caregivers make a mistake, they can be harder on themselves. Come to this webinar to learn the new research on self-compassion and how to give it to yourself as a caregiver.
Register online today by clicking here.
For additional Information: You can contact Janet at janet@janetedmunson.com with any questions you have about participating.
Click here to visit Janet’s website for a full list of presentations and upcoming events


Pender has his seat!Insight Memory Care Center’s Annual
Paintings and Pairings

Thursday, October 17, 2019, 5:30 pm – 9:00 pm

At: Fairview Park Marriott
3111 Fairview Park Drive, Falls Church, VA 22042
Join us for a fantastic evening! Enjoy paired hors d’oeuvres and wines, a delicious three course dinner, and exciting auctions and artwork for sale.
•  Mingle over wine and appetizer pairings
•  Bid on fabulous art and auction items
•  Enjoy a delicious three-course dinner
•  Win a raffle or live auction item!
Pender, Insight’s therapy dog, has his seat! Do you have yours?
Click here to get your early bird tickets by September 30th!


Here’s something different than our usual event announcements . . .
An opportunity for you to share your thoughts and opinions, that we hope will make a difference for our friends living with disabilities. 

Fairfax Area Disability Services Board Community Needs Assessment Survey
the Fairfax Area Disability Services Board promotes self-sufficiency and well-being of people with disabilities so that people of all abilities can fully participate in our community.
We need YOUR help to make the Fairfax area a more inclusive and accessible community. We want to know about your experiences in the areas of housing, employment, transportation and more so we can align resources and planning to better meet the needs of people with disabilities in the Fairfax area.
We would greatly appreciate your help by completing the survey and by distributing our 2019 Needs Assessment Survey to your social groups and community contacts.
This survey is now open as of 9/9/19 and closes on 10/11/19.
Please take the survey below and share!
https://www.surveymonkey.com/r/fadsbsurvey

I hope this newsletter is helpful and we’ll see you Out & About soon! Will we see you at Cafe Fairfax? Susan Kousek from Balanced Spaces will visit us – details on our Cafes page (click here).

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

Exciting News for our Parkinson Community!

The News!

The news from the Inova Movement Disorders Center is that their team of Movement Disorder Specialists is growing! Dr. David Whitney recently began seeing patients at his office in Fair Oaks as well as in Gainesville.

The title of this presentation may sound familiar, but it is constantly being updated. I’ve attended it several times, but each one is different as new advancements are added. I can highly recommend that you attend!
Advancements in the Treatment of Parkinson’s Disease: Neurorestoration and Beyond
Thursday, October 10, 2019, 4:00 pm
At: Fairview Park Marriott
3111 Fairview Park Dr., Falls Church, VA 22042
Join the Inova Movement Disorders Center for a discussion about the new treatments for Parkinson’s disease and the future of our field, followed by an extended question & answer session where patients and their families can direct the conversation. You can also meet the team’s newest Movement Disorders Specialist, Dr. David Whitney.
Please RSVP, as space is limited:
marie.bermudez@inova.org / 703-776-3130

Parkinson Social Network is involved in organizing this annual event now in it’s 33rd year. Caregivers can enjoy the time connecting with others who understand first-hand what it means to be a caregiver.
Caregiver’s Conference: The Art of Friendship in Caregiving
Presented by the Northern Virginia Dementia Care Consortium
Monday, November 11, 2019 from 8:00 am – 3:30 pm
At: Korean Central Presbyterian Church
15451 Lee Highway, Centreville, VA 20121
Topics – Speakers
Creating a Dementia Friendly Virginia – Melissa Andrews
Latest Updates in Dementia Research – Dr. Tabassum Majid
Mona Lisa and the Art of Dementia Care – David Troxel
Ethical Challenges in Dementia Care – Dr. Michael Gillette
Physicians of the Human Spirit – David Troxel
Who Should Attend
• Family caregivers
• Volunteers working with older adults
• Professionals in aging and related services
$35 conference fee. Fee includes continental breakfast, lunch, snack, materials, and certificate of attendance.
Register at https://nvdcc2019.eventbrite.com
This conference sells out quickly. Purchase your ticket today! Registration ends Nov. 3rd or earlier if capacity is reached.
For more information about the conference, please call Lindsey Vajpeyi at 703-270-0043 or click here to download the flyer.

Sentimental Journey Chorus
There are still openings for the new Sentimental Journey Chorus for people with early and mid-stage dementia and their care partners. The Chorus meets at Insight Memory Care Center in Fairfax on Monday mornings. This chorus is a new initiative through Encore Chorale, for all singers 55 and over, with a Chorale in Reston and a Rock Chorale in Oakton. Register at  www.EncoreCreativity.org.

Music Therapy
Joshua Schrader at Capital Music Therapy Services is working to start a music therapy class for Parkinson’s soon. If you are interested, please email Josh at joshua.schrader@capitalmts.com.

Parkinson’s in local news
Thank you, Susan Kousek, our speaker at cafes Fairfax and Ashburn this month, for sending us this article: Herndon Teen Wins National Scholarship for Method to Diagnose Parkinson’s Disease. From the article:
“Kopparapu developed what the institute said is the first diagnosis system for early-stage Parkinson’s disease using an MRI scan. The Herndon resident was inspired to create the system — which is accurate nearly 97 percent of the time — after his grandfather was diagnosed with the disease at a late stage and was unable to use commonly-prescribed medication to fight the disease.”
Click here to read more!

Rock Steady Boxing NoVa
Alec is working on adding a new Rock Steady Boxing location in the Springfield/Alexandria area and developing a waiting list. If you want to add your name to the list, please contact Alec Langstein at nova@rsbaffiliate.com, call 571-730-8553, or visit rocksteadynova.com. The faster the waiting list grows, the faster he can get the program started!

More boxing news! Click here to check out the article about local Rock Steady Boxer, Anna Grill, in the Summer 2019 issue (page 6) of In Your Corner, a free publication by Rock Steady Boxing.

Growing Resilience: Mindfulness & Body Awareness for People with Parkinson’s Disease
Kickoff weekend:
Saturday September 28th – 2:00-4:30 pm* (note – first class 2.5 hours)
Sunday, September 29th – 2:00-4:00 pm
Sundays: October 6, 13, 20, 27 – 2:00-4:00pm

Location: Emmaus United Church of Christ – 900 Maple Ave E, Vienna, VA 22180
Instructors: Carolyn Black-Bagdoyan and Trish Stotler      Cost is $345
There are still spaces available for this 6-session class series is designed to bring the benefits of mindfulness and body connection to people with Parkinson’s, and empower them towards greater inner resilience, well-being and quality of life. We combine strategies and techniques drawn from the clinically studied Mindfulness-Based Stress Reduction program with therapeutic yoga practices. Each class will include an adaptive yoga practice.
Click here for more information on their website or contact Carolyn at hearttreeyoga@gmail.com

More from the Davis Phinney Victory Summit in Philadelphia
The PowerPoint presentations from some of the speakers are now available for you to read and download.
Not Just the Shakes: Non-motor Symptoms – Heather Koons, MD, Vanderbilt (Nashville, TN)
Cognitive Challenges & What to Do About Them – Daniel Weintraub, MD, University of Pennsylvania School of Medicine (Philadelphia, PA)
Punching Back at Parkinson’s with Exercise – Michael Braitsch, DPT, Tribe Wellness (Richardson, TX)
Live Your Best – Amy Carlson, Davis Phinney Foundation Ambassador (Monrovia, CA)
Cultivating Happiness – Connie Carpenter Phinney, MS, Care Partner, Davis Phinney Foundation (Louisville, CO)
To check out these presentations, click here to go to the Philadelphia webpage, then click on Event Materials and Presentations.

Parkinson’s on the Move
We met a lot of interesting people at the Davis Phinney Victory Summit. Angela and Karl met Alexander from Parkinson’s on the Move and shared information about his website. There are videos of workouts, an exercise library with individual exercises, yummy recipes, and videos to help you reduce stress. There’s something for everyone, of all abilities. Use of the resources on their website is free, but you can also contact them about your own personalized program. Click here to learn more about Parkinson’s on the Move!

Senior Spelling Bee
Thursday, Sept 26, 2019 10:00 – 12:00 noon
At: Hunters Woods at Trails Edge
2222 Colts Neck Rd, Reston VA 20191
Join us for this exciting event that brings together seniors from across Northern Virginia for some fun competition! Come and cheer for your favorite team!
For more information please contact Toni Reinhart 571-373-7464 or toni@tonireinhartdementia.com. Toni has said she’ll be wearing her bee costume at the Spelling Bee . . .

I hope this newsletter is helpful and we’ll see you Out & About soon! This week we’ll be at our Side by Side support groups. Katie Fair will visit us to talk about driver rehabilitation. I hope you can join us! Details on our Side by Side page.

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

As Summer Comes to a Close

Florida Keys

I hope you’ve all had a wonderful Labor Day weekend holiday! It’s hard to believe that summer is coming to a close and the weather will soon be cooler.

Our Funny Month of August
At our Cafe Ashburn last week, and in keeping with our theme of humor, one of our friends arranged for us to view a Mary Maxwell YouTube video and we enjoyed her dry sense of humor. If you google Mary Maxwell and YouTube, you can see the various videos of her thoughts on getting old.
Click here to see the video we watched on Wednesday.
We also chatted about our favorite I Love Lucy episodes which you can also find if you search on YouTube.

I met Gretchen at the Davis Phinney Foundation Victory Summit in Philadelphia. On her flyer it says “Each one of us has a face. It is the beauty of our faces that we want others to focus on.”
“I AM” The Face Of Project
Gretchen White is a one woman non-profit, “I AM” The Face Of Project – www.iamthefaceofproject.org. She was taking photos at the Victory Summit for a book she is working on that will show the beautiful faces of people with Parkinson’s. Her goal for this book is to have 100 faces, but if she gets 50, she will be very happy. At the moment, she is very close.
If you or someone you know want to be a part of this project? Gretchen is asking people to send Gretchen a black and white photo of their face. Click here for a photo release form. Please make as many copies as you need.
Gretchen will also need your first name, age, date when diagnosed, country where you live, and a brief (one paragraph) about you to include.
The deadline for the book is September 30th.
If you’d like to contact Gretchen, her email address is: iamthefaceofproject@gmail.com

Luscious Landscapes – Art Exhibition
We often talk about how Parkinson’s seems to bring out creativity in people and we have several artists joining us at our various cafes. One of our carepartner friends, Linda Bankerd, will have her paintings featured at Touchstone Gallery in D.C. from September 4 to 29.
Click here for more details about Linda’s exhibition.

A Positive Brain – podcast about Parkinson’s and PSN
I recently sat down with Toni Reinhart and Peggy Breda to record a podcast about Parkinson’s and the Parkinson Social Network. According to the description we talked about “how this grass roots organization is helping people with Parkinson’s stay connected, active and social through companionship, cafe’s and donuts!”
Click here to listen to the podcast. Click here to choose from the wide range of topics – all to do with the brain – that Peggy and Toni have covered in their other podcasts.

I hope this newsletter is helpful and we’ll see you Out & About soon! Click here to see more about our events and others in our community.

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

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