- The Foundation For Peripheral Neuropathy - https://www.foundationforpn.org -

How to get Support without Leaving Home

Many patients with peripheral neuropathy find meeting with others who understand the challenges of living with peripheral neuropathy to be helpful and therapeutic.  In the ‘new normal’ thrown upon us due to coronavirus, face-to-face meetings have become a challenge as locations are closed and people are reluctant or not permitted to gather in groups. There are, however, alternatives for patients who are looking for support and available resources, accessible from the comfort of one’s computer or phone.

Here are some options if you are looking for groups or other resources.

Peripheral Neuropathy Facebook Pages:

Several patient-focused pages have been established to share information and allow patients to interact. In addition to the Foundation for Peripheral Neuropathy page, [1] two other recommended pages you can join are Peripheral Neuropathy Success Stories! [2] and Neuropathy Care Support Group [3]. Join Facebook, search for these pages, and ask to join or follow to receive information and discussion on your own time.

Support Groups Gone Virtual!

Groups have found that they connect well with each other through Zoom or other webcasts, phone, or other means.

National Meetings:

Peripheral Neuropathy Resources Support Group [4]meets the second Monday of the month over Zoom. The group has two sessions: one from 4:00-5:00 PM ET and one 7:00-9:00 PM ET. Anyone interested can get on the group’s mailing list by emailing contactingcj@gmail.com or going to their website. [4]

Peripheral Neuropathy Success Stories has started Zoom calls every other Thursday from 2:00-4:00. For more information, join the FB page, and contact one of the administrators through FB messenger.

Regional and Local Meetings:

Many of the Support Groups listed on the Foundation for Peripheral Neuropathy website [5] have either paused or modified to become virtual through Zoom or other platforms. While these groups are still mostly regionally, most welcome members from anywhere! If the time works for you, contact the organizers and join in!

U.S. East Coast:

Massachusetts/New England: 3rd Thursday 1-3 pm ET via Zoom. Contact Leslie MacGregor at lcmacgr@gmail.com.

New York/Long Island: Group will be meeting via Zoom the 2nd Weds of the month from 11:30-12:30 pm For information email Lucia.Jamaluddin@nyulangone.org.

Florida: Meets via Zoom first Monday of each month 1:00-2:00 pm ET. If interested, contact tofthagen.cindy@mayo.edu.

DC Metro area: Peripheral Neuropathy Support Group of Metro DC. Saturday 2:00-4:00 once a month. Next meeting via Zoom on July 18. For more information or to register contact dcpn@gmail.com [6]

U.S. Central:

Illinois/Chicago: Chicago Chronic Pain Group Saturdays 10:00-12:00 CT via Zoom. For more information, contact Rev Angel Mason at angel.mason@icloud.com.

Indiana/Indianapolis: Chronic Pain Management Group meets via zoom third Monday of each month 6:30-8:00 PM CT. For more information contact Margaret L. Frazer@pfizer.com.

U.S. West Coast

California and neighboring states: Western Neuropathy Association organizes support groups throughout California and neighboring states. WNA is organizing webinars, as well as telephone support calls for anyone who is interested. Support phone calls are held several times a month. For more information, please contact WNA at info@pnhelp.org.

Canada:

Calgary: Calgary Neuropathy Association meets virtually every other Tuesday until August, and will begin offering speakers monthly in September. September’s speakers will present on Medical Cannibis for Neuropathy. For more information, check their website www.calgaryneuropathy.com [7]

The Calgary CRPS/RSD meeting is also held once a month via Zoom. The next meeting is July 15 6:00-8:30 pm MT. For more information on this and other meetings for this group email calgaryCRPSgroup@gmail.com.

Other Resources:

While we are all waiting to settle into a ‘new normal’, there are some other resources available to patients with PN if you have questions or need recommendations:

  1. Check the Foundation for Peripheral Neuropathy website [8]. We are updating the website all the time. You can find a list of our news articles and newsletters on the FPN Media page [9].
  2. Reach out to the support group leaders listed on the FPN Support Group [5] page. Most group leaders have offered to answer questions or to offer suggestions even if their groups are not meeting.
  3. Many of the healthcare institutions have very informative websites. One such website that was recommended with for the Mayo Clinic Connect [10].
  4. Chronic Pain Support & Connections is a Canadian nonprofit offering free on-line support. Support is available to Canadian and non-Canadian citizens.  You can find more information on their website [11].

Have you found resources or support groups that you can access from your home? Let us know at info@tffpn.org