Parkinson Social Network

Music Therapy for Parkinson’s

music therapy

I’m back in Northern Virginia and there were some interesting announcements in my Inbox this week. I was curious to see these two about music therapy in our area.

Parkinson’s Music Therapy Info and Demo Night
August 24th, 2019 from 4:30 – 5:30 pm
Where: Capital Music Therapy Services
10560 Main St., LL-12, Fairfax, VA 22030
When people with Parkinson’s disease (PD) work with a music therapist they see improvements in movement symptoms, speech, cognitive functioning, and mental health. Music therapy helps people with PD maintain function, express creativity, and experience a better quality of life.
– Parkinson’s Foundation
For details RSVP: andrew.kavanagh@capitalmts.com

Singercize! comes to Kennedy Center
Thursday, September 12, 2019, 12 noon – 1:00 pm
The Singercize! Improving Parkinson’s Disease Symptoms through Singing is coming to the Kennedy Center as part of the REACH Opening Festival. You can visit the Kennedy’s Center’s website for more information: https://kennedycenter.sched.com/event/Sljn
Elizabeth Stegemoller is an assistant professor at Iowa State is a long time Parkinson’s researcher (music and movement) and Parkinson’s disease advocate.


I didn’t hear from anyone about this announcement last week so I thought I’d list it again in case someone is interested but missed it.

U-Step walker Free to Give Away: U-Step Walker and ROHO Cushion

I’ve been contacted by a recently widowed lady who would like to donate her late husband’s U-Step walker. The U-Step is designed for people living with Parkinson’s and has a special brake system that makes it safer to use than the usual rollater. With the U-Step, you have to squeeze the handles in order to move with it and the brakes kick in when you let go.

ROHO
She would also like to donate his ROHO cushion which helps to relieve pressure sores for someone who needs to spend a lot of time seated.

If you know someone who would find these items helpful, please email me at Sonia@ParkinsonSocialNetwork.org and I’ll connect you with the donor.


For those of you in or near Loudoun County, we have a couple of announcements for you today from the Loudoun County Area Agency on Aging.
Writing as a Coping Mechanism: A Workshop for Caregivers
Saturday, September 7th, 10:00 am – 2:00 pm 

Where: Loudoun County Area Agency on Aging
742 Miller Drive SE • Leesburg, VA 20175
This free writing workshop for caregivers offers a few hours’ relief from caregiving concerns.
Workshop Leader: Joanne Lozar Glenn
Click here to view the flyer for more details.
To reserve your spot for this free workshop, please send an email to aaasupport@loudoun.gov or call 703-771-5407.

Loudoun County Area Agency on Aging – Case Management Services
Click here for a flyer with details about what they offer.


News from Insight Memory Care Center!
Pender’s Party One BIG celebration!
You’re invited to join us on Tuesday, August 27th for a big day of celebration as Pender turns one!
7:30 – 10:00 Pastries with Pender
Stop in for some coffee and a sweet treat from Chantel’s Bakery in the morning!
12:00 – 1:00 Puppy Playtime!
Our friends from PALS will be stopping by for a fun doggie playdate!
3:00 – 5:00 Popsicles with Pender
Come cool off & relax with popsicles on the patio, and a little coloring fun!
We’ll be celebrating throughout the day and all are welcome to stop by for any or all of the activities!
Click here to learn more, RSVP, and see Pender’s birthday wishlist online! Questions about the event? Please contact Christi Clark at 703-204-4664 or christi.clark@insightmcc.org.


I hope this newsletter is helpful and we’ll see you Out & About soon! We have two cafes this week – at Alexandria and Fairfax. Details on our Cafes page. Will we see you there? We’re planning to tickle your funny bone!

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

A visit to Parkinson’s South Australia

The photo above is of a rainbow lorikeet sitting on the railing munching on some seeds – not at all bothered by us humans chatting so close to him.

G’day from South Australia – week 2
Every year when I visit here, I like to catch up with our friends at Parkinson’s South Australia. Last week I met with Olivia Nassaris, their CEO. Exciting things are happening for Parkinson’s SA under Olivia’s leadership, including the Brain X Body Fitness Studio that they are building next door to their current offices, which will include new office space as well. They hope to open later this month and I was able to look around and see how it’s all progressing. Click here to read more about Brain X Body Fitness and how it will enable people to reach and maintain optimum brain and body health. This new studio will be available to the public as well as the Parkinson’s community, and will help to fund Parkinson’s SA.

Parkinson’s SA is also funding its first research project, a proof-of-concept trial, of a promising therapy – Photobiomodulation – designed by Australian Parkinson’s researchers. Outcomes will be presented at their conference on September 10.

I first learned about Parkinson’s when I lived in South Australia. My first boss, owner of a couple of bookshops and a publishing company lived with Parkinson’s. In recent years when I’ve returned to visit mum, I’ve learned of people I knew back when I lived here who are now living with Parkinson’s. It seems so strange to think how our paths have crossed in such a different way after all these years. There are about 8,000 people living with Parkinson’s here in South Australia with about 80,000 in the whole of Australia. I always look forward to learning what the Parkinson organizations here do to support their community.


Loretta Veney
Susan Dietrich, Coordinator, American Parkinson Disease Association Information & Referral Center of Virginia, asked me to share this website with you: https://lorettaveney.com/.
Loretta Veney is a caregiver, and a motivational speaker and author (Being My Mom’s Mom and Refreshment for the Caregiver’s Sprit). Susan invited us to look at Loretta’s website which includes a blog. Perhaps there will be something there that could be helpful to you or someone you know. I heard Loretta speak at a caregiver event a couple of years ago and she was a very engaging speaker.


Parkinson’s Foundation Webinar
Expert Briefing: Communication Strategies for Optimal Success

Tuesday, September 17 from 1:00 pm – 2:00 pm ET
To kick off their 11th Expert Briefings series, Parkinson’s Foundation invite you to join their new webinar platform, where you’ll be able to see the presenters speak and answer your questions in real time!
Speaker: Angela Roberts, PhD, Assistant Professor at Roxelyn and Richard Pepper Department of Communication Sciences and Disorders Northwestern University (Parkinson’s Foundation Center of Excellence)
Description: Meaningful conversations allow us to create and maintain relationships in our lives. However, changes in the body associated with Parkinson’s disease (PD), including facial expression, speech, cognition and hearing can interfere with successful communication between people with Parkinson’s and their partners. In this webinar, Angela Roberts will focus on conversation difficulties in the context of PD and will provide communication strategies for successful conversation interactions.
How to Watch: Register here.
CEUs: If you are a healthcare professional or social worker, please click here for details on how you can obtain one continuing education credit.
For more details, please contact the Parkinson’s Foundation’s Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org.


U-Step walkerFree to Give Away: U-Step Walker and ROHO Cushion

I’ve been contacted by a recently widowed lady who would like to donate her late husband’s U-Step walker. The U-Step is designed for people living with Parkinson’s and has a special brake system that makes it safer to use than the usual rollator. With the U-Step, you have to squeeze the handles in order to move with it and the brakes kick in when you let go.

ROHO cushion
She would also like to donate his ROHO cushion which helps to relieve pressure sores for someone who needs to spend a lot of time seated.

If you know someone who would find these items helpful, please email me at Sonia@ParkinsonSocialNetwork.org and I’ll connect you with the donor.


Our Side by Side support groups meet again next Wednesday, August 14. We will be visited by Dr. Melanie Bush, a physical therapist who is coming to answer our questions about getting out of bed, in and out of cars, how to put on pull on sweaters, and more. If you are planning to attend, please RSVP and send me your questions so Dr. Bush can know which of her handy gadgets she should bring. For more information about our Side by Side support groups click here.

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

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

G’day from South Australia – 2019

dopey koala

The photo above was taken in my friend’s front yard. I’m told this is what happens when koalas overindulge on gum leaves but I don’t know . . . I read that koalas getting drunk on eucalyptus leaves is a myth. Actually, it reminds me of trying to sleep on the plane . . .

I’m back in South Australia visiting my mum for her 94th birthday. She lives in a residential care community and fell again on my first night here. Fortunately, she tends to land on her bottom so she’s ok. She’s fallen like this a few times in the last year, usually at night when she goes to the bathroom, and when I saw her slippers I had a pretty good clue as to why. She has a pair of sheepskin booties but is slipping her feet into them as though they were clogs with her heel crushing the back of the shoe instead of having it surround her heel. This means that her feet aren’t positioned securely in her shoes. We also realized that with her feet swollen due to circulatory issues she needs to be able to just slide her feet into her shoes when she’s putting them on by herself in the night so we decided to get slipper scuffs. Fingers crossed that they do the trick!

Sometimes we need to do a bit of detective work to figure out why someone is falling or why there’s been a change in behavior. I’ve only got a few days to observe mum and work with the staff to organize things for her, but they really are so good with her. Their care is truly person-centered and their affection for her is genuine.


Rock Steady Boxing NOVA is opening another location in Alexandria!
Alec is currently developing a waiting list, so please contact him at nova@rsbaffiliate.com or 571-730-8553 if you want to add your name to the list. The faster the waiting list grows, the faster Alec can get the program started. The location of the class is TBD.


American Parkinson Disease Association (APDA) news

APDA Symptom Tracker app
APDA is offering a FREE symptom app available from Google Play for Android and from the Apple Store for iPhone. With it you’ll be able to:
• Keep track of your symptoms – including tremors, rigidity, balance and more.
• Create your report, share with your care team, or save to your library.
• Consult with your doctor for more personalized resources and support.
Click here for more details.

Webcast: Spotlight on Parkinson’s Disease: Getting Motivated to Move!
Parkinson’s disease affects the person diagnosed and everyone who is close to that person: family members, friends and co-workers. We invite you to view our latest webcast in the “Spotlight” series, Spotlight on Parkinson’s Disease: Getting Motivated to Move!
This webcast is an archive of the live web/teleconference education program that was held on July 10, 2019.
Speaker: Terry Ellis, PhD, PT
Click here for more details.


Davis Phinney Foundation news

Women and Parkinson’s with Dr. Michelle Fullard
Wednesday, August 7, 2019, at 2pm EST
During this 60-minute educational presentation, Dr. Fullard will address:
• Symptom presentation differences
• Motor and non-motor symptom differences
• Differences in Parkinson’s progression
• Accessibility of care
• Caregiver issues
• Disparities in outcomes
• Quality of life differences
• And much more
You’ll also have a chance to ask Dr. Fullard your questions. If you’re interested in how Parkinson’s affects women specifically, from sleep to cognitive and emotional impacts, this webinar may be the perfect fit for you. To register for this free webinar (that you can join from the comfort of your own home), click here. If you’re unable to make it at the scheduled time, Davis Phinney Foundation suggests that you register anyway and they send you a recording as soon as it’s available.

You Can’t Exercise Your Way Out of Poor Social Connections
This article on the Davis Phinney Foundation blog has special meaning for me. I am often told, particularly by people who are relatively newly diagosed, how alone they’ve felt prior to meeting others living with Parkinson’s. I’ve seen what a difference connecting with others and sharing their similar experiences can make to a person. It is what motivates your friends at Parkinson Social Network to offer a variety of ways for people to connect with each other, and also share events with you through this newsletter and on our website.
Click here to read the article with additional suggestions for how to connect and be social.

Reminder . . . Victory Summit in Philadelphia on August 24.
Click here for details. Registration is free! And you’ll see some familiar faces, too.


The Golden Gazette
The August issue of Fairfax County’s Golden Gazette includes an announcement on page 21 about our August Side by Side support groups featuring a visit by Dr. Melanie Bush. I want to send a shout out to the Golden Gazette editors for their many efforts to get the word out about our Parkinson Social Network and events. Thank you to you and all your staff!
If you’d like to learn more about the Golden Gazette, click here to subscribe. It’s free!
To learn more about what Fairfax County offers older adults, click here.


Dance for PD®
Dance for PD® released it’s streamed class this month. Anyone can join these classes from the comfort of their home! This particular class is taught by David Levanthal, Program Director and Dance for PD® Founding Teacher. Click here to view and participate in David’s class. You’ll find more information on the Keep Moving page on our website.


Learn What the Loudoun County Area Agency on Aging Can Do for You!
Thursday, October 3 from 11:50 am- 12:50 pm

If you live in Loudoun county you might find this course a helpful way to learn about the services and programs offered by the Loudoun Area Agency on Aging. You’ll receive an overview of these programs and services, with an explanation of how to access them, as well as an information packet.
Ruth Ann sent us this information from the OLLI GMU fall catalogue, and it is course #973. Click here for more information.

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

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

Sinemet CR update and . . . it’s hot!

melting ice cream truck sculpture

I thought the above photo was perfect given the heat we’ve had this last week.
Click here to check out the artists’ website. 

Travel Time at Cafes Alexandria and Fairfax
We’ve been having fun talking about travel and sharing tips and stories. I’ve been taking notes and hope to share them in next week’s issue of Out & About.

Hot enough for you?
Karl Robb has perfect timing. Click here to read his latest blog post on you can Protect Yourself from Summer Dangers. There are some helpful tips specifically for people living with Parkinson’s and many more for ALL of us. Thanks for the reminders, Karl!

Last week, Angela sent me information from newsletters she received from a couple of Parkinson organizations. We thought the following would be of interest to you:

IBM unveils fingernail sensor that can monitor PD
On the Wisconsin Parkinson Association‘s website there’s a description of IBM’s latest innovation of a fingernail sensor that can help people with Parkinson’s by detecting symptoms and check the effectiveness of medication.
Click here to read more about it.

Sinemet CR Discontinued
News from the Michael J Fox Foundation that Merck will no longer manufacture Sinemet CR. Their blog post offers suggestions for other options.
Click here to read the blog post.
Click here to read the letter from Merck to the Michael J Fox Foundation.

Parkinson Social Network will be an exhibitor at this conference.
Care Wise: A Community Resource Conference
Thursday, September 12, 2019 8:00 am – 3:30 pm 
At: Fairfax County Government Center
12000 Government Center Parkway Fairfax, VA 22035
Presentations, panel discussions and exhibitor topics designed to enhance awareness of:

  • Resources for Older Adults, Individuals with Disabilities and Veterans
  • Mental Health Connections
  • Continuum of Care Information
  • Aging in Place Strategies

Recommended for care professionals, case managers, social workers, clinicians, residential staff, students and other community advocates
No charge for attendance; complimentary lunch provided.
Space is limited.
Register at https://www.surveymonkey.com/r/CarewiseConf2019 by September 5, 2019

Looking for an educational weekend trip?
APDA 2019 Virginia Education Day!
Saturday, September 28, 2019 from 8:00 am – 4:30 pm
At: DoubleTree Hotel
50 Kingsmill Road, Williamsburg VA 23185
Speakers include local friends and advocates Karl and Angela Robb, and Bob Pearson.
Ann Perkins writes:
This is Virginia’s version of the national paced conferences that grab your attention, including:

  • Understanding, Managing and Living with Parkinson’s disease –
    to include a panel of movement disorder specialists
  • Breakout sessions on dementia and neuromodulation, research, brain fitness, benefits of anti-inflammatory eating
  • Demonstrations and benefits of Parkinson specific exercise
  • With Kendra Lapointe hosting as President of the board of APDA-Hampton Roads Chapter and 25 different speakers to choose from

Many will spend Friday night at the venue. There are special rates, so take advantage of them by using event code APD (single/double $139/nite) by calling 800-222-8733 for the Doubletree Williamsburg 50 Kingsmill Rd., Williamsburg VA 23185

For more information about the when and where, as well as speakers, topics, and to register (only $25), click here.

I hope this newsletter is helpful and we’ll see you Out & About soon! We’ll be at Cafe Ashburn Wednesday. And it’s still National Ice Cream Month so you know what that means! Will we see you there?

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

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