On Monday, May 6, Rep. Jennifer Wexton (D-Va.) used a text-to-voice application to “speak.” In 2023, she was diagnosed with progressive supranuclear palsy (PSP). Continue reading
Five Tips from Jon and His Father
We saw these “five tips” on an online community for those coping with Multiple System Atrophy (MSA). The tips are about staying active, resting, scheduling activities with intent, staying positive, and having the caregiver research “all the bad things that can happen” so that the person with a diagnosis can focus on positive things. These tips may be of interest to everyone with an atypical parkinsonism disorder. The author is Jon, writing on behalf of his father, diagnosed with MSA in 2023. They kindly gave permission to share.
“Tips and Tricks” from Susan
We saw these “tips and tricks” on an online community for those coping with Multiple System Atrophy (MSA). The tips are about sitting down, using plastic bowls and a cookie sheet, using a lanyard, toileting, prism glasses, leak-proof underwear, and more. These tips may be of interest to everyone with an atypical parkinsonism disorder. The author is Susan, who has an MSA-C diagnosis. She kindly gave permission to share. At the end, she shares this message: “I often am asked how I stay so positive, and my response is always ‘It’s one thing I can control’.”
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Multiple System Atrophy Symposium (Hybrid) – May 4, 10am-3pm PT – Register now!
Stanford’s Movement Disorders Center and Brain Support Network are co-hosting this Multiple System Atrophy (MSA) Symposium. This is a hybrid event — some attending in-person on Stanford’s campus and many attending virtually.
Who should attend? Everyone is welcome — those with MSA, caregivers, family members, friends, home care aides, healthcare professionals, and anyone in the community interested in learning more about multiple system atrophy.
Date/Time:
Saturday, May 4, 2024
10am to 3pm PT
(no speakers during lunch and very short afternoon break)
Space is limited, so please register now!
There are two ways to join — virtually (online) or in-person at Stanford.
VIRTUAL REGISTRATION IS NOW OPEN!
Virtual Attendance:
$20/each
$40/each – “pay-it-forward” ticket for yourself and sponsor one ticket
$100/each – “super pay-it-forward” ticket for yourself and sponsor tickets for a family of four
Is $20 a financial hardship? Please let us know and we’ll provide a code for a free ticket.
Do have the financial means to sponsor someone else’s attendance? Please choose the “pay-it-forward” ticket levels of $40 (sponsor one ticket) or $100 (sponsor tickets for a family of four). Or, donate directly to Brain Support Network, with a note that the contribution is earmarked for event scholarships.
Deadline to register for the virtual symposium:
Saturday, May 4, 2024, 11am (after the event has begun)
IN-PERSON REGISTRATION IS NOW OPEN!
Location:
Stanford Center for Academic Medicine
453 Quarry Road, Palo Alto, CA 94304
Doors Open: 9:30am
Parking is free and plentiful
Lunch is included
In-person Attendance:
$35/each – includes lunch
$70/each – “pay-it-forward” ticket for yourself and sponsor one ticket
$140/each – “super pay-it-forward” ticket for yourself and sponsor tickets for a family of three
Is $35 a financial hardship? Please let us know and we’ll provide a code for a free ticket.
Do have the financial means to sponsor someone else’s attendance? Please choose the “pay-it-forward” ticket levels of $70 (sponsor one ticket) or $140 (sponsor tickets for a family of three). Or, donate directly to Brain Support Network, with a note that the contribution is earmarked for event scholarships.
Deadline to register for the in-person symposium:
Thursday, May 2, 2024, noon PT
(We need time to order lunches for attendees)
Visit exhibitor tables for products or services that may be of interest. And visit information tables by Stanford Neurology, Brain Support Network, and CurePSP, our event sponsor. Stanford Neurology staff can tell you about research studies underway.
Worried about covid-19? The room is fairly spacious, with probably 4-feet between chairs. Some of the organizers will be wearing masks. Masks are not required but recommended. If you are still concerned, register to attend virtually!
Afterwards, visit the historic Stanford Cactus Garden, which is a short walk/wheel from the Center for Academic Medicine. Or, take a short drive to the nearby Cantor Arts Center.
PROGRAM
This symposium will feature a movement disorder specialist, autonomic disorder specialist, physical therapist, speech therapist, and neuro-palliative care physician from Stanford, UCSF, and Kaiser. A highlight in the afternoon will be a panel of people coping with MSA — those with an MSA diagnosis and MSA caregivers.
OTHER DETAILS
Within a few weeks of the event, we will email everyone who registered a list of relevant resources from Stanford Neurology, Brain Support Network, and CurePSP, the event sponsor.
The symposium will be recorded. We will share a link to the recording with everyone registered.
Questions? Please email Brain Support Network.
JOIN US! SPACE IS LIMITED — REGISTER TODAY!
Caregiver’s Advice – “20 Lessons Learned the Hard Way”
A local Parkinson’s Disease (PD) caregiver support group member recently offered her highest recommendation for a book titled “Advice From a Parkinson’s Wife: 20 Lessons Learned the Hard Way,” by Barbara Sheklin Davis (2019). We encourage you to buy it! Barbara authored five books before this one. She was a Parkinson’s care partner for over twenty years. Her latest book is “Advice from a Parkinson’s Widow.”