OK, let’s just say this right up front: I really don’t want to participate in a PD support group. Why? I don’t think I’m far enough along in my symptoms to need support. More critically, I don’t have a caregiver (yet) who needs support (grateful as I am for my wonderful husband). Meeting other people with Parkinson’s who are further along is….well, inspiring but, let’s face it, kind of a downer. It’s particularly a downer that most support groups meet at “Senior…[Something]” or, worse yet, “[Something]…Nursing Home”.
Nevertheless, after attending a PD conference several months ago, I was invited to attend a PD support group. I felt that politeness required that I attend. I have since shown up every so often to the monthly meetings. After this last time, I was about to contact the organizer to tell her I was going to withdraw because my symptoms were so much lighter than everyone else’s.
However, then I realized I had picked up several nuggets from the meeting …hmmm….maybe the support group was useful after all. What were some of the nuggets?
–An article was passed out about cognitive changes from PD. Most of the changes are hard to blame on PD — they sound like normal aging. For instance, difficulty finding a word (which seems to be happening more often for me). Mercifully, the article differentiates between Alzheimer’s (the words are lost) and PD (the search function is slower but the words are still there).
–I got to spend some time with the oldest member of the group (87). He is, not surprisingly, also the most severely impacted, with dyskinesia (head bobbing) and trouble moving. But he is always a great inspiration for me, especially the fact that he is mentally lucid. (Dementia impacts some 20% of people with PD, and is perhaps my biggest fear.)
–We discussed a book called The Grain Brain, which is yet another tome jumping on the gluten-free bandwagon. This author claimed that gluten was a cause of PD, and that the ideal diet would be lots of red meat (the “Paleo diet”). My scientific reaction to this is “Balderdash!” (That’s the nice version.) All I can say is, I have a healthier diet than 99% of Americans, yet I got PD. I wish PD were so easy to simply blame it on eating Lipton’s onion dip as a child.
–We reviewed some notes from a lecture about grief and loss regarding PD. The phrase that caught my eye was “anticipatory grief”, that is, grief over losses you haven’t had yet. This is a type of grief that isn’t abnormal, but is one that I should drop — no sense mourning something that hasn’t happened yet, and may never happen. (See dementia above.)
–One of the caregivers said her technique to handle grief was “intentional creative procrastination”. Her husband’s situation has worsened rapidly, but she confronts it calmly. She tells herself, “I don’t have to make that decision right now. I need to research available options , but I don’t have to make that decision right now. I’ve made responsible preparations, and I can let go of the rest right now.”