PD Support Groups - Sharing Positive Experiences

Mary,
What a great topic! I started a young onset PD support group nearly 10 years ago. Needless to say, we are not so young anymore. Anyone is welcome at our meetings.

As you know, 'support' means different things to different people. It can mean meeting for coffee, ice cream, lunch or dinner. It can mean having a formal speaker and topic. It can mean a discussion with a specific topic. Or it can mean anything goes. The important part is that it meets the needs of your audience.

What is your audience? I attended a support group leader's work shop once where they said that 10-15 people is a support group with 2-way interaction. More than that really becomes and educational group with more 1-way interaction. The smaller group can be more intimate and allows the opportunity for everyone to participate. The workshop also said that people often have a window of time in their progression where they need support. They are researching, reaching out to others for answers and striving to educate themselves. At some point those needs are met and they move on.

I think the meeting time and place can be important. Again, you need to know your audience. As a young onset group, we found many people worked, so we meet on a weekday evening once a month. We provide something like pizza, wraps or sandwiches for a light supper since folks are often coming directly from work. Many support groups meet during the day.

Misc stuff ... We have a holiday party at Christmas that includes spouses. We have a table at the local annual PD Symposium. We have a print piece (like a brochure) that we put in doc's offices and display wherever appropriate. I send email meeting reminders. We meet at a church.

Discussion/speaker topics can include: sleep; medications; swallowing/speech issues and programs to improve them; financial issues because may not be working as long as expected; living wills, durable financial power of attorney, health care power of attorney; information on PD trials (if you don't volunteer, who will); exercise; procedures like deep brain stimulation (DBS); programs that can improve walking; PD political advocacy; PD internet resources- chat rooms, bulletin boards, helpful sites; and so on.

Enough babbling. I look forward to hearing what works for others, including you, Mary.

lizzy4451

Lizzy, the meeting prep is done. I drafted a questionnaire for our membership to complete today and the first return stated a need for more discussion of challenges, frustrations, fears and adaptations. And to 1) do more of the same re speakers, 2) need more opportunity for sharing experiences, 3) more breakout sessions where the caregivers are grouped together and the patients are in a separate room with a different facilitator. We typically summarize the discussions in each group. We end our meetings in song and the comment was this continues to be appreciated. We place our meeting notices in four community newspapers. We did not have any funding so we have a 50-50 drawing at each meeting with the portion that we retain used for speakers' gifts, postage, etc. One of our awesome members passed away this summer and I sent a donation to our Support Group in her memory and have since acknowledged a friend's passing by sending a donation to our Support Group. Whereas our membership is older and use canes and walkers, we have a Mini Walk close to home instead of joining in the larger regional fundraiser for PD in Center City. Our membership raised over $9,000. We too had a holiday luncheon and each table responded to a trivia quiz with lottery tickets to the winners. Had a lot of fun and laughs. We are just now putting our heads together to plan for 2014. Lastly, we now have a Steering Committee in place and we are working to assure that we have a structure in place that will sustain our group. Many of the discussion/speaker topics you listed we have covered. I hope others will benefit from your's as well as my writeup and they will give us insight into their practices.

Good morning Lizzy.  I have two booklets from National but not the one you referenced.  I couldn't find online; I'll call Monday.  Thank you for your continued help.

I now know more about the various PD organizations, thanks to you. I've made some calls, got interrupted and need to pick up on this again. Should be a quiet week to catch up on reading and open projects. Thanks Lizzy.
MaryMac-PA

Wow! You have quite a large group. Here is our(support group) story ....
Three of us co-founded a young onset support group 8-10 years ago. We became a 501(c)3 (not-for-profit). We were in our early/mid 40's. We received a fair amount of press coverage (and, hence, awareness of our group) because one of the co-founders was a high-profile politician that the press loved.

Our niche was that we were young onset. There already was a PD support group for folks who were not young onset. Depending on the topic, in the early days we would have 10-45 folks at our meetings. I have always handled the programs/speakers. We do have a Board who recently has started playing a more active role in selecting the program topics. I lead the meetings. Today we have 5-15 attendees and we are not so young. In fact, our name is a misnomer. We promote ourselves as 'young at heart' rather than 'young onset'. Our numbers dropped in direct proportion to those attending a growing PD exercise program. I think people find their support there rather than with our group, which is fine.

Here are 'lessons learned' and things I would do differently (some of which I am currently implementing ....)1) Have a 'senior' person at each meeting - have a sign-up sheet. They have experience and can answer questions and provide advice/resources.
2) Promote program topics - perhaps via email reminders, phone call tree, newsletter, etc
3) Provide light snack - people love to eat
4) Consider having a 'senior' person agree to handle a whole meeting.
5) Keep inquiring to learn what folks want from the group and when (day, time)
6) Since our attendance is low and unpredictable, I'm starting to play previously-recorded webinars/speakers - we just listened to a great webinar on sleep. Several national PD organizations archive their talks and make them available to anyone. That way I haven't imposed on a speaker with a low turn-out.
7) Several social PD groups have recently started. That prompted us to decide what our niche is going to be. It finally hit me that the social aspect was being addressed. An area that wasn't being addressed was education. Sooooo .... our new goal is to provide support and education. I'm in the process of identifying speakers for the next 6 months and am working on promoting the group. I'm getting a little burned out, but recently feel like we have a new and positive direction for the group.

As often happens, I have gone on much too long.

lizzy4451