Are you interested in joining a PwP Discussion - Support Group?
If you want to join an existing support group (in the U.S.) PMD Alliance has contact listings for groups in 20 states (and I believe is actively working on listing all the remaining states).
pmdalliance.org/resources/s...
If there isn’t one in your area . . . think about starting one . . . Here are some ideas for you:
Read Parkinsons Foundation’s SUPPORT GROUP GUIDE: parkinson.org/sites/default...
MEETING FREQUENCY Meet in the same place, same time twice a month. Weekly is too often, if only once a month too much water goes under the dam in people's lives.
GROUP SIZE ideally is 5-10 PwP units*. This gives everyone a chance to "check-in" and is a sufficient number to keep the conversation going.
MEETING PLACE: In addition to “traditional” places: Conference Room at health center, local library, retirement community meeting room or your home . Consider issues of parking, wheelchair access and handicapped bathroom, availability year round. The space to host separate groups PwPs and CareGivers concurrently on occasion is a major plus.
RECRUITING MEMBERS: Post written word of your interest in areas visited by PwP’s - write letters or call Neurologists, Speech Therapists and Physical Therapists. List your group on PMD Alliance website. There may also be a State Parkinson's Organization that maintains lists of PD Support Groups. Your neurologist is an excellent source of referrals.
While DISCUSSION TOPICS may seem to loom as a significant ongoing challenge there are many online resources (PD organizations, individual blogs, PD chat rooms (HealthUnblocked) and news consolidators (Parkinson’s News Today) to draw ideas from. Always maintain a list of good questions or topics to hold in reserve if “check-in” does not fill the entire meeting time. ** “Remind” group members with an email one day in advance of next meeting posing your topic or question for discussion. It can serve as backup if check-in’s don’t fill the meeting time.
The most important aspect of Support Groups is not the dissemination of information about PD… its about building a sense of community and an understanding that “we’re in this together” and to provide help in combating social isolation. With that in mind every meeting should have space reserved for a person who needs to talk about a subject that is a significant item for them.
If you live in a remote area and can’t travel to a Group (I live on an Island off the Maine Coast) and are interested in joining a support group that would meet online – I’m thinking of starting one that would use ZOOM. Email me for further information if this interests you: frank.mundo@gmail.com
* PwP + CarePartner = 1 PwP Unit
** feel free to email me for a list of “Parkinson Related Topics”
