Some thoughts.
The resources below are excellent. In addition, I have two suggestions for anyone starting a support group are to 1) give people time to meet and talk in separate groups - those at risk, caregivers, people with HD, etc. so they can share common concerns openly. Discussion leaders could receive training as peer facilitators.
2) Treat us with respect. The work that genetic counselors and the other
support personnel involved in testing do is very important. However,
because a person wanting testing and their spouse or support person are
required to jump through hoops to prove themselves before they can get the
test creates a situation in which we are likely to feel patronized. This
was certainly true for my husband and me and I think it's the primary reason
why he won't go to our local support group where some of the same people are
involved. They are nice, knowledgeable, helpful people but he doesn't want
to see a 'gatekeeper' again.
HD is a very difficult disease to have and to deal with in the family, and
yes, we may need some counseling and support. But we are still people with
other interests and we do have our own knowledge bases, skills, talents, and
resiliencies. A good support group will allow us to vent, share ideas,
learn something new, help ourselves and each other, and come away empowered.
Provided by Marsha L. Miller, Ph.D., E-mail: m.miller2001@comcast.net
Answers to this question can be found through these links:
- Support Group Leaders Manual
- Published by the National Parkinson Foundation, Inc. The link is at the bottom of the page
- Starting a New Self-help Group
- Published by the Mental Health Net
