Online Groups Meeting Anytime and Virtual Groups Meeting Monthly

Online Groups Meeting Anytime and Virtual Groups Meeting Monthly

Online support groups can be very convenient, especially during the COVID-19 pandemic or if you live in an area that doesn’t have a face-to-face group. There are two types of online groups — those that are open any time and those that conduct virtual meetings monthly at specific times.

Online Support Groups – Meeting Anytime

There are several disorder-specific online-only support groups. Unless indicated, you must be a member to read and post. These are the most active:

MSA

Multiple System Atrophy Buddies Facebook Group

https://www.facebook.com/groups/MSABuddies/
To join, click on “Join Group” button
Membership: While most active members are MSA caregivers, there are a few active members who have an MSA diagnosis.

PSP

Progressive Supranuclear Palsy Facebook Group

https://www.facebook.com/groups/ProgressiveSupranuclearPalsy/
To join, click on “Join Group” button
Membership: While most active members are PSP caregivers, there are a few active members who have a PSP diagnosis.

PSP Association Forum

http://psp.healthunlocked.com
Membership: While most active members are PSP or CBD caregivers based in the UK, there are one or two active members who have a PSP or CBD diagnosis and a few American members. Anyone may read. Must be a member to post.

PSP/CBD Community in Smart Patients

http://smartpatients.com
Membership: Community began in January 2018. Most members are PSP or CBD caregivers based in the US. Must be a member to read and post.

Virtual Support Groups – Meeting Monthly

CurePSP sponsors PSP, CBD, and MSA support groups where participants can participate by webinar, using your phone or computer for audio. Some of the webinars allow participants to participate by phone only – never needing to log-in via computer – and some require participants to log-in first. Groups are generally for caregivers-only or for those with a diagnosis. Meetings are usually one-hour in duration but can go longer. If you intend to participate, pre-registration is ideal. Once you pre-register, you will receive a meeting reminder in advance of each meeting. And you will receive any notices of cancellations or schedule changes. For more information, contact the facilitator.

The groups include:

Mixed PSP/MSA/CBD

People with PSP/MSA/CBD and their Carepartners
Meeting Time: 3rd Thursday, Noon-1:30pm PT
Registration Link: https://us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4
Meeting Tel: +1 646 558 8656, Meeting ID: 850 7745 0341
Facilitators: Jessica Shurer, LCSW, [email protected] and Diane Breslow, LCSW, [email protected]

People with PSP/MSA/CBD Who Are Living Alone (flying solo)
Meeting Time: 3rd Wednesday, 11am-Noon PT
Registration:  https://us02web.zoom.us/meeting/register/tZUtf-qoqj0tE9wLCP-ddhcG3P1duHQPPv8a
Meeting Tel: +1 646 558 8656, Meeting ID: 850 7745 0341
Facilitators: Diane Breslow, LCSW, [email protected] and Adriana Gonzalez, LCSW, [email protected]

Carepartners of People with PSP/MSA/CBD
Meeting Time: 2nd/4th Thursday at 12:00-1:30pm PST
Registration Link: https://us02web.zoom.us/meeting/register/tZAvceitrzotGdfteL8WR2LX01SjASUJ1Efr
Meeting Tel: +1 646 558 8656, Meeting ID: 842 6151 1733
Facilitator: Diane Breslow, LCSW, [email protected] and Ileen McFarland, [email protected]

Adult Children of People with PSP/MSA/CBD
Meeting Time: 2nd Wednesday, 5-6:30pm PT
Registration: https://us02web.zoom.us/meeting/register/tZUld-mhqzIiHNFXylFSnuvb-4o_0uW7Ydv_
Meeting Tel: +1 646 558 8656, Meeting ID: 818 0095 9865
Facilitator: Laurie Spindler, [email protected]

(Women Only) Carepartners of People with PSP/MSA/CBD Support Group
Meeting Time: First Thursday of each month from 11:30am-12:30pm PST
Registration Link: https://us02web.zoom.us/meeting/register/tZIod–prDIiG93cgs_-lKhJJ-E2Et5mW3U0
Meeting Tel: +1 646 558 8656, Meeting ID: 865 0612 9819
Facilitator: Nancy Montgomery, [email protected] and Janis Appel, [email protected]

(Men Only) Carepartners of People with PSP/MSA/CBD Support Group
Meeting Time: First Tuesday of each month from 5:00pm-6:00pm PST
Registration Link:
https://us02web.zoom.us/meeting/register/tZIodu2qrjsqH9UvjxLyw__eP3Ep21zHKmvj
Meeting Tel: +1 646 558 8656, Meeting ID: 865 1420 0051
Facilitators: Tom Tait, [email protected] and Bill Furlow, [email protected] 

After the Loss: A Bereavement Support Group for Carepartners
Meeting Time: 3rd Monday of each month at 11:00am PST
Registration Link: https://us02web.zoom.us/meeting/register/tZwtdu-urz8rHdSU-qMSeeVgfEAMunr3e7bp
Meeting Tel: +1 646 558 8656, Meeting ID: 880 1661 4170
Facilitators: Diane Breslow, LCSW, [email protected] and Meghan Sweeney, LCSW, [email protected]

CBD

People with CBD
Meeting Time: 1st Tuesday of every month at 3:00pm PST
Registration: https://us02web.zoom.us/meeting/register/tZwrcu2vrTIsE9angifxZkh2PCyWI182Ouin
Meeting Link: https://register.gotowebinar.com/register/6112622030926313730
Meeting Tel: 213-929-4232, Access Code: 611-128-331
Facilitator: Karry Forsythe, [email protected]

People with CBD and their Carepartners
Meeting Time: 3rd Tuesday of each month at 1:00pm PST
Registration: https://attendee.gotowebinar.com/register/6157272128304268816
Meeting Link: https://register.gotowebinar.com/register/45016539
Meeting Tel: 314-878-0222, Access Code: 314-391-254
Facilitator: Janet Edmunson, 508-308-4195, [email protected]

MSA

People with MSA
Meeting Time: 3rd Monday of each month at 5:00pm PST
Registration: https://us02web.zoom.us/meeting/register/tZUtf-CgrD0uG9CGa7yq3806EcOd8xhmUaqR
Meeting Link: https://register.gotowebinar.com/register/8182973838726361090
Meeting Tel: 914-614-3221, Access Code: 500-058-061
Facilitator: Cathy Chapman, [email protected], 307-332-4144

Carepartners of People with MSA
Meeting Time: 1st Monday of each month from 5:00pm – 6:00pm PST
Registration: https://us02web.zoom.us/meeting/register/tZIqf-uhrDgoHdfeY_XXwpyWe602VedTnWbK
Meeting Link: https://register.gotowebinar.com/register/8844354271892149249
Meeting Tel: 415-655-0060, Access Code: 950-759-636
Facilitator: Tom Tait, [email protected], 856-725-2450

PSP

People with PSP
Meeting Time: 2nd & 4th Monday of each month from 4:30pm – 5:30pm PST (no meetings in August)
Registration Link: https://us02web.zoom.us/meeting/register/tZUpce-rrD4qHdVzkfx0e8OSq94-UEu7dcaC
Meeting Tel: +1 646 558 8656, Meeting ID: 814 6632 5071
Facilitator: Margo Silk, [email protected], 609-265-7070

Carepartners of People with PSP
Meeting Time: 3rd Tuesday of each month at 5:00pm PST
Registration: https://attendee.gotowebinar.com/register/7620701206235337739
Meeting Link: https://register.gotowebinar.com/register/103248952
Meeting Tel: 914-339-0024, Access Code: 753-354-191
Facilitator: Janet Edmunson, [email protected], 508-308-4195

Carepartners of People with Advanced PSP
Meeting Time: 4th Wednesday of each month from 4:00pm – 5:00pm PST
Registration: https://attendee.gotowebinar.com/register/8583419301916409613
Meeting Link: https://register.gotowebinar.com/register/103130017
Meeting Tel: 951-266-6124, Access Code: 289-328-424
Facilitator: Steve Garcia, [email protected], 201-677-2542

 

National Support Resources

Some of the national organizations offer tollfree support phone numbers, such as:

  • The Association for Frontotemporal Degeneration
    HelpLine 866-507-7222
  • Lewy Body Dementia Association
    Caregiver Link 800-539-9767
  • Lewy Body Dementia Resource Center
    Live Helpline 833-LBD-LINE (answered 8am to 8pm ET, daily)
  • MSA Coalition
    Support Hotline 866-737-5999