Support Groups
What has been your experience with this? As I write in another post, I've been dating a man with ten-year Parkinson's for about year now. I although we agree I'm not falling into a caregiver role, I have identified and accompanied him to a few different PD support groups in hopes of him finding others with the same problem (he didn't know any or reveal his disease readily) and haven't been too impressed with any of them. In one, the emphasis is on remaining very positive and "fighting" the disease; that discussion is just regular social small talk about unrelated matters, because "we're more than our PD." It seems to me you could chit-chat with anyone, but not discuss the hard parts of PD with anyone but other sufferers/caregivers. Yet another is just either a presentation, usually by some home health agency or company selling mobility aids and lunch or everyone reading along while a member reads a print-out. The first was "early signs," and everyone was asked to share theirs. I don't see how this helped patients many years into their diagnosis. Finally, I've spend some time with a few of his good friends and even close family members, and NO ONE ever broaches it, asks, or talks about it. If I try, it's shut down. It's as if the whole world were in denial or putting their heads in the sand. Where can a patient and caregiver (or concerned friend) go for some honest talk, brainstorming solutions, or just venting to each other about perfectly normal fears, frustrations, and grief? Not to be critical, I'm sure they're doing their best, but my friend doesn't get much out of them; nor has he made friends there with whom he could walk through this in real life.