CurePSP Resources for the Coronavirus Crisis
SURVEY: Side-effects or symptoms from COVID-19 Vaccine in PSP and CBD Patients
Advisory on COVID-19 vaccine and PSP, CBD, and MSA from Lawrence I. Golbe, MD
Advisory on Coronavirus From Lawrence I. Golbe, MD
Connecting & Caring
Throughout this coronavirus crisis, CurePSP continues to remain committed to offering as many opportunities to connect with others in your community who are facing similar hardships, as well as as ways to speak with peer supporters, connect on our SmartPatients forum, attend an online tele-conference support group, or one of our new Zoom webinars. We also just released our brand new version of the 2020 CurePSP Guidebook.
“In-Person” Support Group for PSP/MSA/CBD Patients and Family Members (Hosted on Zoom)
Facilitated by Ileen McFarland, Chair of our Patient & Carepartner Advocacy Committee and Diane Breslow, MSW, LCSW
Registration is required:
https://us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4
“In-Person” Support Group for Carepartners of PSP/MSA/CBD Patients (Hosted on Zoom)
Facilitated by Jessica Shurer, MSW, LCSW, Director of Patient & Carepartner Advocacy and Diane Breslow, MSW, LCSW
Registration is required:
https://us02web.zoom.us/meeting/84261511733?occurrence=1591902000000
Managing Stress & Anxiety
We recognize that many of you coping with the struggles and challenges that PSP and other degenerative neurological disease present are now facing even greater stress and anxiety brought on by the COVID-19 virus. The reality is that social isolation, uncertainty about the future, worry, fear, can result in increased anxiety and depression. We have provided some tips and links on how to best handle these difficult emotions.
Mental Health America
COVID-19 Information & Resources
National Council on Aging
Coronavirus: What Older Adults Need to Know
Springwell
Springwell Resources & Services
Find help in assessing needs, identifying supports, locate resources and coordinate services.
WellMed Charitable Foundation
Caregiver Teleconnection Program
The Caregiver Teleconnection program has one-hour conference calls, at no cost. These sessions cover a wide range of interesting topics related to the care you provide to your loved one. You can get expert advice, ask questions and talk to other people who are also providing care.
AARP Weekly Tele-Town Hall
AARP Live Q&A Event: The Coronavirus
AARP is hosting weekly live Tele-Town Hall with Coronavirus Information on Thursdays at 12pm
National Health Council Webinar
Coronavirus Preparedness for People with Chronic Diseases: What Do Caregivers Need to Know?
National Alliance of Caregiving and Caring Across Generations
See Tips for Sandwich Caregivers in the Era of COVID-19
This tip sheet can be helpful to all caregivers responsible for both the young and old.
Mindfulness & Movement
We have come to understand that social distancing and self-isolating are key to slowing the spread of the virus. This means that we are all spending quite a bit of time at home. Here are some videos and links to online resources that provide some structure for at-home movement and mindfulness practices.
At- Home Speech Therapy Practice Sessions with the Loud Crowd
Parkinson Voice Project Facebook Live Series
Parkinson Voice Project is a nonprofit specializing in speech therapy for people with Parkinsons and prime of life neurodegenerative disease. Tune in for their daily sessions, held six times per week on Facebook Live. Monday – Friday 11am EST and Tuesday at 7pm EST.
Exercise for Atypical Parkinsonism with Eric Johnson, CSCS, CIFT
@Home Virtual WebEd Exercise Series
Eric Johnson, CSCS, CIFT, Neuro Exercise Specialist has worked with hundreds of clients with neurological conditions. He is the CEO and founder of Movement Revolution. The May 7th session will focus on MSA and the May 14th session will focus on LBD.
Feel Real Online Gatherings
Feel Reel Online Gatherings & Workshops
Breathing exercises, mindfulness and community. All welcome. Free.
Poe Wellness Solutions
Pilates & Yoga for Parkinson’s Videos
Dance For Parkinsons
Online Dance and Movement Classes
Live classes and meet-ups, free activities, and an entire archive of videos from Mark Morris Dance Company
Michael F. Fox Foundation Resources
Apps for Stress Relief and Wellness
If you have a smartphone or a tablet, there are several apps to help you relax or take your mind off your stressors. Whether your favorite way to de-stress is to strike a few yoga poses or dive into a puzzle, there’s probably a fun app for you.
Orlando Neuro Therapy
Home Exercise and Physical Therapy Routines
These videos are intended to provide general guidelines and should NEVER replace a face to face evaluation with a licensed physical therapist.
Music & Arts
As we are all practicing “social distancing” by staying indoors and adjusting to a new routine, a great way to stay entertained and bring some of the joy of springtime inside the home is to enjoy some arts and crafts projects, or get involved with music performances or classes. Find some fun links below!
Caring Arts
Music, Painting, Puppets and More!
Musicians Bill Syniar & Katy Gillan perform music to listen to at home, Ellen Lustig shows us how to paint with dots or learn to make fun and or learn to make easy bird feeders or tissue flowers using simple materials in your home.
Ossia Music Therapy
Music Therapy Classes with Alie Chandler, MM, NMT, MT-BC
Alie Chandler, a North Carolina-based neurologically-specialized music therapist, will be offering online music therapy opportunities. Contact Alie to set up your FREE trial session!