Thursday, January 24, 2008

The PD Support Group

Keith went to the local PD support group. He had a lot of mixed feelings about it. Keith is always very interested in other PWP. (actually, at one time he avoided them altogether, but has recently changed on this) He wants to know how long since they were diagnosed and how their health is holding up now. I think he is trying to give himself some sort of timeline for how long he has to be "healthy." I don't know why - PD affects each person in a different way, at a different rate. But it's something he feels the need to do, and honestly, I'm pretty interested in PWP as well. So he went to the support group hoping like hell that he would be able to meet others with Young Onset Pd. He was the youngest one there. There were a few people in their late 60's, but most everyone was 70 and up. Of course, there were many younger folks who were caregivers, but they don't count as being actual members of the group. So it's pretty safe to say that Keith felt a bit out of place.

Also, Keith said that the entire group was a little, um, how should I put this? - quiet. When the leader asked the group something all he got in return were blank stares. There wasn't much chit-chat going on. And that's what really got him going.

Keith came home from the group, and even though he didn't meet any PWYOP, and even though the group was a bit dull for his tastes, he did enjoy himself. They are approaching the time when they elect officials for the support group and Keith was considering nominating himself. He was able to come up with lots of new ideas for the group - ways in which to bring in a more refreshed and exciting tone to the overall group. I told him not to expect too much - most of these people had PD for many years, they were elderly and just didn't have the energy to keep up with a new, young and boisterous leader. But I told him that I support him (of course!) if he should decide to do so.

Keith's biggest problem right now is finding others like him. We've gone through several different programs for PD patients, and specifically those with YOPD. But everyone is either way older than him, or is way more progressed than he is. Everyone with YOPD that we've been able to contact was diagnosed years ago. Although Keith's age, the disease has progressed more for them. They just aren't dealing with the same issues we are - raising kids with PD being a huge one. I guess we'll just have to keep searching . . . .

But anyway, Keith has since decided that running for office in the support group is likely not such a good idea. He understands how different he is from everyone else there. He will, however, continue to go to the meeting every month. I'm just glad he's taking that first big step. I hope he continues in this direction because I can really see some positive changes in his feelings about having PD!!

1 comment:

Kate Kelsall said...

Hi Mary,

I don't know where you live but have you checked this site for a listing of YOPD Support groups:

I completely understand why Keith would feel uncomfortable with a group of elderly PDers with more advanced PD.

The same thing happened to me when I attended one PD support group meeting 12 years ago. I was freaked out when I witnessed the devastation of this disease. I never returned to any support group until a friend and I started our own support group more than a year ago.

Good luck to both of you.

Kate Kelsall
Shake, Rattle and Roll