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:

CBD


CBGD Support Yahoo!Group

(Yahoo shutting down this group as of December 15, 2020)

groups.yahoo.com/neo/groups/cbgd_support/info
To join, click on purple “+ Join Group” button
Membership: While most active members are CBD/CBS caregivers, there are a few active members who have a CBD/CBS diagnosis. “CBGD” is an old term for CBD.

LBD


LBD Caregivers Yahoo!Group

(Yahoo shutting down this group as of December 15, 2020)

groups.yahoo.com/neo/groups/LBDcaregivers/info
To join, click on purple “+ Join Group” button
Membership: Nearly all active members are LBD caregivers.

LBD Caring Spouses Yahoo!Group

(Yahoo shutting down this group as of December 15, 2020)

groups.yahoo.com/neo/groups/LBD_caringspouses/info
To join, click on purple “+ Join Group” button
Membership: Limited to LBD spouse caregivers.

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.

Shy Drager Yahoo!Group

(Yahoo shutting down this group as of December 15, 2020)

groups.yahoo.com/neo/groups/shydrager/info
To join, click on purple “+ Join Group” button
Membership: Perhaps half of the active members are MSA caregivers and half are those with an MSA diagnosis. “Shy Drager” is an old term for MSA.

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:

People with PSP/MSA/CBD and their Carepartners
Meeting Time(s): 2nd/4th Wednesday at 12:00-1:30pm PST
Registration Link: https://us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4
Meeting Tel: +1 646 558 8656 Meeting ID: 850 7745 0341
Facilitators: Gregg Felice, LCSW-R [email protected] and Jessica Shurer MSW, LCSW [email protected]

Carepartners of People with PSP/MSA/CBD
Meeting Time(s): 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: Gregg Felice, LCSW-R [email protected] and Ileen McFarland, [email protected]

(Women Only) Carepartners of People with PSP/MSA/CBD Support Group
Meeting Time(s): 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(s): 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(s): 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: Gregg Felice, LCSW [email protected] and Meghan Sweeney, LCSW [email protected]

CBD


People with CBD
Meeting Time(s): 1
st Tuesday of every month at 3:00pm PST
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(s): 3rd Tuesday of each month at 1:00pm PST
Meeting Link: https://register.gotowebinar.com/register/45016539
Meeting Tel: 314-878-0222 Access Code: 314-391-254
Facilitator: Janet Edmunson, 207-799-4963, [email protected]

MSA


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

Carepartners of People with MSA
Meeting Time(s): 1st Monday of each month from 5:00pm – 6:00pm PST
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(s): 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: Martha Kenney, [email protected]

Carepartners of People with PSP
Meeting Time(s): 3rd Tuesday of each month at 5:00pm PST
Meeting Link: https://register.gotowebinar.com/register/103248952
Meeting Tel: 914-339-0024 Access Code: 753-354-191
Facilitator: Janet Edmunson, 207-799-4963, [email protected]

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

Adult Children of People with PSP
Meeting Time(s): 2nd Wednesday of each month at 5:00pm PST
Meeting Link: https://register.gotowebinar.com/register/8531299121767742977
Meeting Tel: 631-992-3221 Access Code: 800-832-853
Facilitator: Laurie Huffman, [email protected]

 

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
  • MSA Coalition
    Support Hotline 866-737-5999