What a great meeting we had today! With no outside guest speaker, and the holidays behind us, it was time to keep the meeting members only with a freeform conversational flow. Topics ranged from medications old and new as well as what is coming down the pike. Some time was spent discussing the possibility of stem cells as an answer to Parkinson’s Disease. This led to discussion of trials which tend to consist of small groups. We are all anxious for word of trials which show us a new step forward.
One of my favorite discussions was about secrecy.. Our group was started, stressing privacy. Many of us hadn’t “come out” to employers, friends or even parents. There were many reasons. Some fear a loss of their jobs if the diagnosis was known, others worried about insurance. Some like me, told a few people and watched themselves become nothing other than the disease in some people’s eyes. Whatever reason someone had, the upshot was that we don’t publicize when or where or meetings are or publish member names.
One of the members asked, “Why are we hiding? We should be public with our disease and be role models for dealing with the disease. And why not publicize our meetings so local community members can find us?” This led to quite a back and forth about whether or not or how much to share of our personal medical history. There was no final conclusion but a greater understanding of people’s thought processes made it worthwhile. By the way, we do have open doors to affected women in the community and from our meeting site know that they can tell those women who and where we are.
Alternative therapies got some talk-time. This group is fighting hard against their PD. There are some using acupuncture,Reike, Tai Chi, yoga, massage – and some are very interested in trying the QiGong we learned about last month. When detailed recommendations of particular services were given, I sat aside the details to send in an email to the group.
We are trying out our idea of a lending library. I brought books that I’d found interesting to share with interested members. Hopefully, other months will see other books come in to be lent out. Books that went out this month include:
- Parkinson’s Diva by Maria De Leon
- The Peripatetic Guide to Parkinson’s Disease, multiple author/contributors
- A Soft Voice in a Noisy World by Karl Robb
- If I Can Climb Kilimanjaro. Why Can’t I Brush My Teeth by Nan Little
- Brain Storms by John Palfreman
February’s meeting will also be speaker-free. If there’s any new subject that we can learn from, I’ll try go get an appropriate speaker for March. Let me know if you have an idea.