Parkinson Social Network

Notes from What’s Your Workaround? discussion 03/19/25

Posted on March 26, 2025 by Angela Robb

Thank you to those who attended last week’s meeting. We appreciate the shared personal tips and experiences, discussing assistive devices, and helpful tools for daily living. The group also touched on exercise programs, medication management, communicating with your healthcare providers, and the importance of support networks for individuals with Parkinson’s.

Due to the personal nature of the discussion, this session was not recorded. However, we did take notes of suggestions that were offered:

Urban Poling Walking Poles – Instructions for use on website.
Crazy Aaron’s Thinking Putty – to improve hand strength, dexterity, and reduce stress.
Floor Mat with an alarm to place next to bed.
Tie string of bells to the door handles to alert the door being opened.
Cane pad for cane handle
Balloon covering cane handle – – helps with identification, grip, and less slippery. 9” balloons to go over cane handle.
Wide base cane tip – makes cane stand up instead of having to pick up from floor – be careful with stairs since wide base may snag the stair.
Collapsible cane – be careful with stairs.
Consult a physical or occupational therapist on using assistive devices like canes or walking sticks.
Electric wheelchair or scooter.
Standing walker – Up Walker
Consider exploring Apple Air Tags or Android equivalents for tracking important items.
Rock Steady Boxing – https://rocksteadyboxing.org/find-a-location/
Explore car assistance devices like: Auto Cane Grab Handle, Adjustable Standing Aid, Portable Vehicle Support Grab Bar Nylon Grip and swivel cushions for easier car entry/exit.
Wear a whistle for loved ones to alert you to when they need help.
Stretch while in bed in the morning before you get up. It’s a safe way to wake your body up in the morning and may help with walking.
Condom catheter to wear to avoid trips to the bathroom during the night and reduce falls.
Adult shirt protector/bib that looks like a shirt and has a crumb catcher.
Tennis ball to make handles easier to grip.
Weighted silverware or adaptive silverware to aid in eating.
Consider electric toothbrushes and water picks for better dental care.
Carry tote bag with cushion or pillow for seating at restaurant. Ask staff for a pillow – they may have one.
Consider replacing round doorknobs with straight handles for easier grip and opening.
Motion sensor for bathroom lighting or under cabinet lighting.
Look into rechargeable camping lights for additional lighting needs which are portable and can be used when traveling. Even a headlamp may be helpful.
Motion sensor night light
Dude wipes – big packs and individually wrapped for messes.
Research Biofreeze products and Lidocaine patches for pain.
Look into Yeti cups for maintaining drink temperature and easier grip.
Non-slip jar opener pads to reduce sliding of cups/glasses.
Purchase multiple reacher grabbers to have one in every room for accessibility.
Use your physician’s online portal or texting the doctor’s office as ways to communicate with your health care provider.
Medical Alert non-profit foundation: Medical IDs for easier access to medical information for person with Parkinson’s and caregiver in case they are incapacitated.
Digital health and medical records.
Spreadsheet with drug/RX/OTC info for both the person with Parkinson’s and the carepartner.
Preparing for and preventing medical emergencies – Recorded presentation/ on YouTube.
Review and update your medication/supplement lists to include over-the-counter items, vitamins/supplements, and share with your healthcare providers.
Ask your pharmacist – drug interactions, help with new medications, OTC contraindications – mail order and in person.
UpEnding Parkinson’s Rock climbing: https://www.upendingparkinsons.org/
Free Virtual and in person speech therapy through Shenandoah University. For more information, contact Myra Schatzki, Director of Clinical Education, at myra.schatzki@su.edu or 540-665-4634.
- Free virtual speech therapy for those in Virginia and Washington DC.
- Daily online SPEAKOUT® voice practices from the Parkinson Voice Project https://parkinsonvoiceproject.org/program/parkinsons-speech-exercises/
Parkinson Social Network YouTube channel – recordings of previous programs and speakers: https://www.youtube.com/@parkinsonsocialnetwork

This list is a combination of suggestions from the community, not an endorsement.

Category: 2025, Caregivers, featured, Monthly Summaries, Online Resources Tags: assistive devices, communication, education, exercise, fitness, health, health care providers, living well with Parkinson's, Online Resources, online support, parkinson social network, parkinson's, parkinson's disease, support, tips, tools

March Staying Connected Newsletter: Watch & Discuss: The Parkinson Pandemic, What’s Your Workaround?, Psychosocial barriers & Quality of Life w/ Dr. Bradley McDaniels, PhD

Posted on March 5, 2025 by Angela Robb

To support our Parkinson’s community, Parkinson Social Network offers online (via Zoom) support options each month:

Watch & Discuss:
Dr. Bas Bloem The Parkinson Pandemic: A Call to Action!

Tuesday March 11th
10:00am-11:30am ET (9am CT | 8am MT | 7am PT)

We will Watch & Discuss a recording (~ 63 minutes) from the PD-Connect titled: Dr. Bas Bloem The Parkinson Pandemic: A Call to Action! The video is just over 1 hour viewing time and there will be a facilitated discussion after the video finishes.
In this recording, internationally known and respected Dr. Bloem from The Netherlands shares his knowledge and research about environmental factors, exercise, nutrition, stress, and these factors impact on Parkinson’s disease.

What’s Your Workaround? Tips/Tricks/How Did You/Did You Ever? Roundtable

Wednesday, March 19
10am ET (9am CT, 8am MT, 7am PT)

Do you have any tips, tricks, secrets, hacks that you are willing to share and enlighten others? Teach us something that we didn’t think of and can solve a problem in a way that we never considered. We encourage everyone in attendance to discuss what works and even what could be improved. Gadgets, gizmos, and anything that you discovered that improves your life is greatly appreciated!

Psychosocial barriers and facilitators associated with Quality of Life for People with PD with Dr. Bradley McDaniels, PhD

Tuesday, March 25
10am ET (9am CT, 8am MT, 7am PT)

Parkinson’s disease presents significant psychosocial challenges, including increased risks of depression, anxiety, loneliness, stigma, and demoralization, which can profoundly affect patients’ quality of life. Applying positive psychology concepts such as resilience-building, fostering social connections, practicing gratitude, and engaging in meaningful activities can help mitigate these challenges by enhancing well-being and promoting a sense of purpose. Encouraging a strengths-based approach, cognitive reframing, and self-compassion empowers individuals with Parkinson’s to cultivate optimism, maintain social engagement, and develop adaptive coping strategies to navigate the disease’s emotional and social burdens.
Dr. Bradley McDaniels is an Assistant Professor and Program Coordinator for the Rehabilitation Studies program in the Department of Rehabilitation and Health Services at the University of North Texas. His academic journey into Parkinson’s disease was deeply personal, inspired by his mother’s diagnosis in 2012, and his current research focuses on addressing the psychosocial challenges associated with the disease, aiming to improve patient well-being and quality of life.

Happening In Our Parkinson’s Community…

March 29 – Great Minds for a Healthier Brain – Mentes brillantes para un cerebro más sano – in-person hosted by PMD Alliance, Woodbridge VA – For more information and to register, visit this link or download the flyer here.
Through April 18 | Dance for PD at George Mason University GMU – Will be restarting on February 7- April 18: in person at GMU’s Fairfax campus. Email Elizabeth Spatz at espatz@gmu.edu to register or visit their website for more details
April 12 – Virginia Education Day, Richmond VA, hosted by POP: Power Over Parkinson’s – Registration is Open!
June 21 – Virginia Parkinson’s Conference, in person, Williamsburg VA – Rescheduled due to weather, registration is open. If you were previously registered for the February date, Visit the website for more information.
At Ease hosted by PADRECC (online) – Click this link for flyer for more information about the Tactical Humor Training for PADRECC Comedy Brigade, contact Jessica.Kaplan2@va.gov to sign up.
WHAT PARKINSON’S FEELS LIKE: A collection of illustrations by Barbara Salsberg Mathews inspired by descriptions written by people with Parkinson’s around the globe. Download for free here: https://parkinsonseurope.org/app/uploads/2024/10/What-Parkinsons-Feels-Like.pdf
Virginia Lifespan Respite Voucher Program is available for residents of Virginia. Visit the Division for Aging Services site to learn more or apply.
Shenandoah University – Loudoun Campus is offering free SPEAK OUT! speech therapy for those living with Parkinson’s, in-person and virtual. Click here to see their flyer for more information or contact Myra Schatzki, Director of Clinical Education at myra.schatzki@su.edu or 540-665-4634.
Parkinson’s Speech therapy via teletherapy in VA and DC – The University of Utah is a SPEAK OUT! Therapy and Research Center for the state of Virginia and the District of Columbia (DC) providing SPEAK OUT! voice therapy at no cost, contact them at 801-581-3506 or email speechpath@utah.edu.
University of Reading has developed a new online group program that aims to improve participants quality of life and help them get back in touch with what is important. To learn more visit their website by clicking here.
Power Over Parkinson’s has an extensive listing of programs in the Richmond area for exercise and education, visit their website for more information.
Live in Maryland? MAPS has a very extensive support group listing on their website.
Dance for Parkinson’s program at James Madison University – JMU has in-person and Zoom online classes. For more information about this program, visit their website here.
SPEAK OUT! Online Home practice sessions are available each day at 11am ET/10am CT/9am MT/8am PT from Parkinson Voice Project.
Sign up for PD Avengers TODAY! PD Avengers is the Global Alliance to End Parkinson’s Disease.