April Staying Connected Newsletter

Watch and Discuss

Tuesday, April 8th @ 10am ET -11:30am via Zoom
Watch & Discuss: Overcoming Hurdles to Exercise
We will watch and discuss a recorded webinar by the Davis Phinney Foundation.
Dr. Mike Braitsch, Doctor of Physical Therapy discusses ways to overcome some of the common the hurdles to exercise you might encounter while living with Parkinson’s.


Dr Evan Gray DO

Saturday, April 12th @ 10:00am-11am via Zoom
Dr. Evan Gray, DO – Take control of Parkinson’s: Mastering Medications, understanding disease progression and improving collaboration with the Parkinson’s Disease Specialist

People living with Parkinson’s will learn how the medication can improve their symptoms and quality of life. Motor fluctuations will be discussed and how best to manage the ups and downs of Parkinson’s disease. We will discuss an easy-to-follow template when interacting with your movement disorder specialist.


Tuesday April 22nd @ 7pm-8pm ET via Zoom
Evening Carepartners Discussion
Join us for an evening discussion on topics shared by Parkinson’s carepartners. This session is facilitated by PSN volunteers with carepartner experience.


ICYMI: In Case You Missed It!

If you missed the presentation: Stand Tall and Fight the Fall – Fall Prevention Strategies for People with Parkinson’s w/ Dr. Mike Braitsch, PT, DPT click the play button above to view on our YouTube channel!


April is Parkinson’s Awareness month and April 11th is World Parkinson’s day. Visit https://worldparkinsonsday.com/ to learn how you can raise awareness and end Parkinson’s disease in your community!


Happening In Our Parkinson’s Community…

  • April 11, 12, and 13 – Insight Into Parkinson’s – Free online educational event serves to provide an informative, inspirational, and supportive experience to our global warrior community. It is free to sign up and watch online live on the 11th and 12th of April (in your timezone). Two days of free streaming will start on 11th April, 9am AEST, to celebrate World Parkinson’s Day, and finish on the 12th April. The third day (13th April) is a dedicated day for Health Professionals.
  • April 12 – Virginia Education Day, Richmond VA, hosted by POP: Power Over Parkinson’s – Registration is Open!
  • April 22nd – 2nd Annual Parkinson’s Educational Event, Charlotteville VA hosted by APDA Virginia, The Parkinson’s Activity and Resource Center, and UVA Neurology Department.
  • June 21 – Virginia Parkinson’s Conference, in person, Williamsburg VA – Rescheduled due to weather, registration is open.
  • 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.
  • 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.
  • 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.

GIVE BACK TO THE COMMUNITY – BE A PSN BUDDYsm

Would you be willing to help a fellow Person-with-Parkinson’s Disease?  We hope you will.
 
Frequently PSN receives inquiries from those newly diagnosed with Parkinson’s Disease, as well as people who are not newly diagnosed, seeking to speak with a fellow Parkinsonian on a one-on-one basis.
 
If you wish to help your fellow Parkinsonians by engaging in a telephone conversation, please let the PSN Board know.  With your permission, we will provide your telephone number and email address on request.  We will, of course, let you know each time we share this information.
 
To participate, kindly email board@parkinsonsocialnetwork.org, or call our office at 571-286-5000.

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

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 walkerUp 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. 
  • 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.