Parkinson Social Network

Holiday Concerts and Tracking Symptoms

Insight’s Sentimental Journey Singers featured on local TV
In September, Insight Memory Care Center partnered with Encore Creativity for Older Adults, to offer a chorus called the Sentimental Journey Singers for those diagnosed with early or beginning moderate Alzheimer’s and other memory impairments.

Local TV channel NBC 4 visited the chorus last Monday, November 18. Click here to read the article and view the video!

But wait! There’s more!
A Holiday Concert!

The Sentimental Journey Singers are currently getting ready for their first holiday concert! They will be joined with the Fairfax Encore Chorale on:
Sunday, December 1st from 2:00 pm – 3:30 pm
At St. George’s United Methodist Church
4910 Ox Rd., Fairfax  VA 22030.

It is a free concert, and no tickets are required. This performance will feature seasonal holiday classics and a variety of other choral favorites.
Contact Information:
Encore:    info@encorecreativity.org    |    301-261-5747


Holiday Song and Social
Thursday, December 12, 1:30 pm – 2:30 pm

At: Capital Music Therapy Services
10560 Main Street, LL-12
Fairfax, VA 22030
Cost: $20 per/person paid on the day of the group. Cash or check. Spouse or caregiver attends for free.
Registration Deadline: Wednesday, December 11
For details RSVP: anna.piper@capitalmts.com


Resources for people who are hard of hearing
Bonnie O’Leary, Outreach Manager for the Northern Virginia Resource Center for Deaf and Hard of Hearing Persons, visited our Cafe Fairfax last week. Bonnie played an audio tape that demonstrates how people with hearing loss hear at varying levels from mild to profound. She also shared with us some of the issues that people who are hard of hearing live with and how family and friends can make their lives a bit easier.
Another thing we learned was that certain medications can cause hearing loss or tinnitus in some people, or exacerbate an existing hearing problem. Bonnie shared a list of ototoxic medications with us, and you can click here to learn more.
Bonnie also suggested that Live Transcribe, an Android application that provides real-time captioning, could be helpful.


Thank you, Bob Pearson for sharing information about this study with us!
Seeking Research Participants for “Smartwatch Technology -Symptom Monitoring” Study
Principal Investigator: Dr. Alexander Ksendzovsky, MD,PHD
Eligibility: Persons with Parkinson’s Disease
Age:18+
Description of Study: We are seeking patients to study a newly developed technology used to track symptoms in Parkinson’s disease. Patients are asked to wear a mobile smart watch and conduct routine clinical tests and tasks. Patients are first asked to spend up to four hours in clinic for neurological assessment while wearing the smartwatch. Patients may be asked to take the smartwatch home for seven days for further testing. The study can be arranged at times convenient for you at NewTouch Digital’s research facility or a location convenient for your participation.
Risks: No significant risk
Payment: A $100 gift certificate along with a lunch will be provided for participation.
Transportation will be provided if needed.
Please discuss participation with Dr. Alexander Ksendzovsky’s clinical team by emailing info@newtouchdigital.com or calling 412-478-1075.
WIRB IRB Study #20191934


APDA symptom tracker
Susan Dietrich, Coordinator for the American Parkinson Disease Association (APDA) in Charlottesville has been sharing information about a free app for the APDA symptom tracker. “It is a tool that you easily answer questions yes or no and it keeps track of your symptoms. Then, you can create a simple graph which can be saved in the “My Library” section of the app, and share it (you can email it) to your health care team.”

Susan recently shared that some people are wondering if this app acts as a “sensor” for collecting data about tremor, falls, etc., and she wanted us to know that it is not. There is a watch in development that may be able to act as a sensor, but it is not available at this time.
Click here for more information about the APDA symptom tracker app.


Another helpful article from Parkinson’s Life.
How to plan nutritious easy-to-chew meals for people with Parkinson’s
Click here to read!

I hope this newsletter is helpful and we’ll see you Out & About soon! We’ll be at Cafe Ashburn on Wednesday. Will we see you there?

Wishing you all a happy Thanksgiving holiday!

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

A Holiday Concert and a Poem About Parkinson’s

people singing graphic

You are invited . . . to Encore Chorale’s Holiday Concert!
Friday, December 13, at 7:30 pm
At: Heritage Fellowship Church
2501 Fox Mill Road, Reston, VA 20191
Encore Chorales of Reston and Fairfax sing traditional and contemporary seasonal music, such as:
• Beethoven’s Festival Hymn to Joy
• Amen! Tell It on the Mountain!
• Drum, Rum Tum (Hanukkah)
• Hallelujah Chorus from Handel’s Messiah
• Here We Come A-Caroling
• Let It Snow!
Encore Chorale concerts are free and open to the public.
No tickets or reservations needed.  Free parking on site.
For information:  Encore Chorale of Reston
EncoreReston@gmail.com
Visit: www.EncoreCreativity.org


Usta Could – A poem about Parkinson’s 
by John Giannico
(first read aloud to the VCU College of Pharmacy Class of 2021 by
their professor, Dr. Emily Peron on October 4, 2019, Richmond VA)

Susan Dietrich, Coordinator for the American Parkinson Disease Association at UVA sent us this poem written by a gentleman living with Parkinson’s.
Susan wrote, “The poem is wonderful, and I wanted to share it far and wide. Page 1 of the attachment is the poem; page two of the attachment includes John’s thoughts about participating in this panel and writing the poem.”
Click here to read John’s poem. Thank you, Susan!


Parkinson’s Piedmont Support Group visit
This afternoon I visited the Parkinson’s Piedmont Support Group in Warrenton to give my presentation: Prepare For Your Care: How to Go Home From Hospital in Better Shape Than When You Went In. Frank Wright, ambassador for the Parkinson’s Foundation Aware in Care patient safety kit program joined me to explain why the kit is helpful and what is in it.
If you’d like us to visit your support group to talk about how to prepare for your care, including hospital, rehabilitation and doctor visits, or if you would like Frank to visit your support group, please contact me at sonia@ParkinsonSocialNetwork.org.


Cafe Fairfax this Wednesday
Slight change of plans as far as our topic is concerned this month!
Bonnie O’Leary from the Northern Virginia Resource Center for Deaf and Hard of Hearing Persons will be our visitor. Bonnie will focus on the challenges of hearing loss for caregivers, which is appropriate given that November is National Family Caregiver Month!

I hope this newsletter is helpful and we’ll see you Out & About soon! Will we see you on Wednesday?

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

Resources for Veterans and Caregivers

Veteran's Day 2019

Veteran’s Day
In honor of Veteran’s Day I thought this was a good time to share a few resources that may be helpful for Veteran’s living with Parkinson’s.
•  Click here for information from the American Parkinson Disease Association (APDA).
•  On the APDA web page, they refer to Parkinson’s Disease Research, Education and Clinical Centers or PADRECC. Click here to check out information about our nearest center in Richmond.
•  Parkinson’s Foundation has several articles of interest to veteran’s. Please click here to read more.
•  AARP also has a Military Caregiving Guide: for Veterans, Service Members and Their Families. Click here for the PDF version of the booklet.


Caring for our Caregivers
Martha BrettschneiderOn Saturday, in recognition of National Family Caregivers Month, Parkinson Social Network honored our caregivers at our second annual caregiver appreciation luncheon! Our keynote speaker, Martha Brettschneider spoke to our caregivers about Mindfulness Tools to Manage Caregiver Stress , Boost Resilience, and Stay Connected to What Matters Most. Our caregivers enjoyed this special time with Martha, with many of them chatting with her over lunch.

We have many thank yous to:
Our Hosts: Insight Memory Care Center, in particular Lindsey & Katelyn
Our Speaker: Martha Brettschneider and her friend Carolyn Bagdoyan
Blooming Into MindfulnessOur Sponsors:
Old Dominion Home Care and Alexandra Johnson for our yummy lunch from Alexandria Pastry Shop,
SYNERGY Home Care for providing care for our Parkinson friends,
Five Star Home Health Care for making it possible for every caregiver to take home a copy of Martha’s book, Blooming Into Mindfulness,
Allegiance Aging Care Services for donuts & coffee,
Patrice DeHaven of Carried Away Gifts and Margaret Sutton & Graceful Care for the beautiful gift baskets they donated.
Our PSN Board of Directors: Karl & Angela, Ruth Ann, Arlene, Nancy, and friends Regina and Sandra

Caregivers at our luncheon

Hope to see you all again next year!


Ask the MD Video: Tips for Parkinson’s Care Partners
Courtesy of the Michael J. Fox Foundation:
Parkinson’s doesn’t just affect the person diagnosed with the disease; it can impact loved ones, family members and close friends, too. For some, that means caring for someone with Parkinson’s disease. Being a care partner looks different depending on where a person is in their disease journey, your relationship, and how much help a person wants or needs. But no matter what, it means caring for your own well-being while caring for another’s, which can be tough.
Click here to watch the video for tips on caring for yourself and someone with Parkinson’s.


The Fall/Winter issue of the Parkinson’s Foundation Parkinson Report is dedicated to caregivers with articles such as these.
• Caregiver Checklist
• From Choir to Care: Navigating Parkinson’s Together
• Top 10 Caregiver Resources
• Care Partners Tell us How Collaborative Care Makes Life Better
Click here to read their newsletter.


I attended the first trial session for this class last week and it was a delightful class enjoyed by the people with Parkinson’s who attended it, along with their family members. This was the first trial class, and sadly was not well attended, but it was an excellent class led by Tom and Kevin. They had people moving without all the seriousness and boredom of conventional exercises. Breathing, voice, physical movement and brain activities were all incorporated. Tom and Kevin are both very personable and knowledgeable, and their empathy and passion touched us all. There will be another trial session in December if you’d like to give it a try!

Neuro Notes: Music for the Mind
free 90 minute trial session
Thursday December 5
from 12:30 pm – 2:00 pm

At: 8100 Innovation Park Drive, conference Room N4, Fairfax, VA 22301
Singing  |  Rhythmic Exercises  |  Music Listening
Singing can enhance voice volume and quality as well as improve respiration and swallowing. Music may also improve mood and cognitive function. The group music experience is also a great way to socialize!
Instructor: Toni Sweitzer, MMT, MT-BC, Co-founder and Creative Director of A Place to Be.
Questions? Contact myinovawell@inova.org.
To register, click here, then scroll down to Exercise for Life, and click on the down arrow next to Neuro Notes.


If you live in Alexandria, this event may be of interest to you. We enjoy our chats in the summer months when we talk about travel, and this event sounds like it will lots of information and ideas.
Senior Services of Alexandria – Speaker Series
On the Move: Travel Near and Far
Thursday, November 14, 10:00 am – Noon (Registration at 9:30 am)
At: Westminster Presbyterian Church
2701 Cameron Mills Road, Alexandria
Come learn all about the health benefits of travel for older adults, what DASH is doing to improve services for city residents, discover opportunities for leisure travel and enrichment and how to enjoy a relaxing trip along the Potomac River. You will hear from representatives of AARP, DASH, Potomac Riverboat Company and the Road Scholar Travel Program. RSVP at 703-836-4414, ext. 110 or at SpeakerSeries.


Northern Virginia Dementia Care Consortium 33rd Annual Caregivers Conference
Today
This was an amazing day! We learned about:
•  Dementia Friendly Virginia including what’s new with the Dementia Friendly initiative in Northern Virginia,
•  the Art of Dementia Care where we also learned about the Best Friends Approach and the importance of socialization,
•  Ethical Challenges in Dementia Care which was fascinating and
We also enjoyed a delicious lunch, caught up with old friends and met new ones!

I hope this newsletter is helpful and we’ll see you Out & About soon! This week we have our Side by Side support groups in Arlington. Will we see you there?

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

Caregivers and New Opportunities

Family Caregiver Month

Not the end – a new opportunity

As many of you already know, I recently joined the team at the Inova Movement Disorders Center. I’ve heard there are rumors that some people are concerned that PSN will cease to exist and it’s time to put those rumors to rest.

Parkinson Social Network is a grassroots organization made up of people touched by Parkinson’s helping each other. Based on our experiences, we help to educate and support each other, and this will not change. We are continuing with our monthly cafes and Side by Side support groups, our annual caregiver appreciation luncheon, our presentations to our Parkinson community and others, and more! There are too many people who feel alone living with Parkinson’s and who don’t know where to find answers to their questions. We created PSN to help connect people with each other and answer those questions, and we will continue to do so.

Your PSN board has done an amazing job of growing our organization so far but we need your help to continue to grow, and reach out to others in the community who are not aware of the resources and support available to them. There are many ways you can help and we value your ideas and your time. From something as simple as welcoming a new person with a smile and a hug, to sharing your thoughts with regards to the needs of our community, to giving your time to meet these needs. You can also help with a financial contribution of which 100% goes to developing our programs.

These first weeks have been a steep learning curve for me as I define the parameters of the job and how to develop the partnership with PSN, but I’m making progress. Your encouragement and support means a great deal to me and I thank you! So to answer the rumor mill, no, this isn’t the end of Parkinson Social Network. It is a new opportunity to create an even stronger grassroots organization of people touched by Parkinson’s reaching out to help each other. I hope you’ll join us!


It’s National Family Caregivers Month!
November is my favorite month because it includes my favorite holiday – Thanksgiving. Are you wondering what that has to do with a month that celebrates caregivers? Well, the November meeting for our Fair Oaks support group generally occurs on Thanksgiving weekend. As part of our discussion one Thanksgiving weekend a few years ago we all shared what we were thankful for. It was a very special meeting, and it was very moving to hear the love and appreciation for the caregivers in our group. It also inspired the PSN Board of Directors to hold a special luncheon for caregivers each year to celebrate and honor them. It is one way we support our caregivers in addition to supporting our friends diagnosed with Parkinson’s.

Another way we support caregivers is by providing resources like this one.
Caregiver’s Corner Online
The Fairfax County Department of Family Services – Older Adults offers a monthly e-newsletter for caregivers called Caregiver’s Corner Online. Our thanks go to Peggy and Lucy who include Parkinson Social Network announcements to help us spread the word. Click here to subscribe. It’s free!


walkerRequest for a walker
Do you have a walker similar to the one in the photo that you are no longer using? We’ve had a request for a walker and they are willing to trade a rollator for it. If you can help, please contact me at Sonia@ParkinsonSocialNetwork.org.


REMINDER: Neuro Notes: Music for the Mind
free 90 minute trial session
Thursday, November 7 or Thursday December 5
from 12:30 pm – 2:00 pm

At: 8100 Innovation Park Drive, conference Room N4, Fairfax, VA 22301
Singing  |  Rhythmic Exercises  |  Music Listening
Singing can enhance voice volume and quality as well as improve respiration and swallowing. Music may also improve mood and cognitive function. The group music experience is also a great way to socialize!
Instructor: Toni Sweitzer, MMT, MT-BC, Co-founder and Creative Director of A Place to Be.
Questions? Contact myinovawell@inova.org.
To register, click here, then scroll down to Exercise for Life, and click on the down arrow next to Neuro Notes.


Dance for PD news
Lucy Bowen McCauley currently has two Dance for PD classes in our area:
Inova Wellness Center
8100 Innovation Park Drive, Fairfax, VA
Wednesday: 11:00 am – 12:00 pm

Kenmore Middle School
200 S. Carlin Springs Road, Arlington, VA
Wednesday: 4:30 – 5:30 pm
For more information

Bowen McCauley Dance Co. provides FREE, weekly Dance for PD® classes for people with Parkinson’s disease and their care partners. There is no pre-registration or dance experience required. An opportunity to connect with others!
Questions? Please reach-out to us at dance@bmdc.org or by phone (703) 910-5175.

Dance for PD® released it’s streamed class for October. Anyone can join these classes from the comfort of their home! This particular class is taught by the Megan Williams.
Click here to view and participate in Megan’s class.


Webinar:
Parkinson’s Nutrition and Living Well with Dr. John Eric Duda

presented by the Davis Phinney Foundation for Parkinson’s
Wednesday, November 6 at 3:00 pm
Nutrition continues to be one of the most important aspects of treatment for people living with Parkinson’s. The challenge is sifting through all of the available information about dietary guidelines and “ideal nutritional plans” to find what works best for each person.

In this webinar on Parkinson’s nutrition and living well, Dr. Duda will address:
• How dietary choices can affect symptom control in Parkinson’s
• How particular foods and timing of meals may interfere with Parkinson’s medication
• How age, progression of Parkinson’s and history can affect the efficacy of certain dietary choices
• Dietary management of non-motor symptoms in Parkinson’s such as sleepiness and fatigue, nOH, constipation and excessive weight loss
• The role of the gut microbiome in Parkinson’s and how to improve the gut by making better dietary choices
• How nutrition can change the molecular mechanisms present in people with Parkinson’s and may even provide disease-modifying effects
• And much more
Click here to register.


Another helpful article from Parkinson’s Life!
12 of the best domestic tools for people with Parkinson’s.
Click here to read.


Thank you Susan Dietrich from APDA for sharing this event!
16th Annual Pancakes for Parkinson’s
When? Saturday, November 9, 9:00 am-2:00 pm
Where? UVA’s South Lawn
Why? 100% of proceeds go directly to
the Michael J. Fox Foundation
Susan also sent some helpful information:
It is the largest student-led fundraiser on The Grounds at UVA, and takes place on The Lawn. The students try to have some parking designated for those with Parkinson’s, but it usually works best to drop someone off near the Amphitheater on McCormick Road. There are some handicap parking spaces on McCormick near the drop-off point, but they are “first come, first served.” Students will be there to assist getting to The Lawn, as well as getting the pancakes for people with Parkinson’s. I will be present with PD literature, and the Charlottesville Rock Steady Boxing program will have a display, as well. And, of course, since the Michael J. Fox Foundation is the recipient of the funds, they will have a presence there, too! There is entertainment all through the event. Donations are accepted for the pancakes, but there is no “admission fee.”

I hope this newsletter is helpful and we’ll see you Out & About soon!

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

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