CurePSP Resources for the Coronavirus Crisis

***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. Please find the upcoming webinar schedule below:

Ask The Doctor: A Conversation with Lawrence I. Golbe, MD

In this webinar, Dr. Golbe answers questions that were submitted during registration by patients and families about PSP, MSA, and CBD.

Meeting Days/Times:

  •  July 7, 2020 at 4pm–5pm EDT

Registration is required:

www.eventbrite.com/e/ask-the-doctor-a-conversation-with-lawrence-i-golbe-md-registration-109029259450

Please submit any questions you would like Dr. Golbe to answer prior to the start of the webinar to info@curepsp.org. Please note that Dr. Golbe is not able to give any case-specific medical advice.


“In-Person” Support Group for PSP/MSA/CBD Patients and Family Members (Hosted on Zoom)

Facilitated by Gregg Felice, LCSW-R, Director of Patient & Carepartner Advocacy, and Ileen McFarland, Chair of our Patient & Carepartner Advocacy Committee

Meeting Days/Times:

  • July 15 and July 29 at 3-4:30pm EST

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 Gregg Felice, LCSW-R, Director of Patient & Carepartner Advocacy and Jessica Shurer, MSW, LCSW, Movement Disorders Center Coordinator at UNC Chapel Hill 

Meeting Days/Times:

  • July 16 and July 30 at 3-4:30pm EST

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.


Center for Disease Control and Prevention

Guidelines for Managing Anxiety & Stress


Mental Health America

COVID-19 Information & Resources


National Council on Aging

Coronavirus: What Older Adults Need to Know


PD Health @ Home

www.parkinson.org/understanding-parkinsons/coronavirus/PD-health-at-home

Parkinson’s Foundation is offering a virtual educational or wellness event every day of the week during this time


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!