How can I get my father to join a Parkinson's disease support group?

2 answers | Last updated: Apr 18, 2016
A fellow caregiver asked...

I've been trying to get my father to join a support group for Parkinson's disease patients in his community, but he's been reluctant to do so. He was diagnosed over two years ago and doesn't get out to socialize as much as he used to. How can I encourage him to connect with others?

Expert Answers

Susan Imke is a gerontological nurse practitioner in Fort Worth, Texas, and coauthor of The Comfort of Home for Parkinson's Disease: A Guide for Caregivers.

I'm a big fan of support groups. If your father is apprehensive about seeing other patients with Parkinson's disease who are further along in the illness, what I'd say to him is: "Yes, you may see someone who's considerably impaired because of Parkinson's. But for every one person you see having trouble, you'll meet four or five others who are doing great, despite having had the condition for many years. And even the person who looks more impaired may simply be having a bad day symptom-wise. The support group experience is usually very encouraging because some members may have had Parkinson's much longer and they're still doing just fine."

I recommend that the adult children of Parkinson's patients go to one meeting of a support group beforehand to preview it for their parent. Knowing what you know about your father, you can give him your take on whether this will be the right group for him, because groups have their own personalities. For instance, if your parent is relatively young and vigorous but the group is made up of much older folks, it might not be a good fit, and you'll want to check out another one.

To help motivate your father, you might offer to go to the local support group with him the first time. People often think of support groups as psychotherapy. Maybe your father doesn't want to sit at a table with a group of people and share his personal story. It may be less daunting for him to know that Parkinson's disease support groups like those organized through the American Parkinson Disease Association and the National Parkinson Foundation often host monthly meetings that focus on a topic presented by an invited speaker. Afterward, there may be refreshments and time to meet and visit with other families. I find that these groups are highly encouraging to patients. You may have to beg your father to go the first time, but you probably won't have to nag him to go back.

Community Answers

Cccarter2005 answered...

I have been a teacher of exercises in a Parkinsons group for some time now. You see patients at every stage--some not so bad--some very bad. Perhaps he is in denial? Perhaps he doesn't want to see what he might be like in a few months or years.I agree it woud be good for you to go with him and just tell him you want you both to go and see if he would benefit from it?? We have a wonderful group here in NW AR :) And we have support meetings every month--up to date information, etc... professional lectures, etc...I think if you go with him a time or two it would make him alot more at ease. Good luck in your will not be a easy one and it is not for sissy's! God bless you and your Dad he is lucky you care enough to want him to go.