For two days I’ve been thinking about and feeling inspired by Fiona’s thread about getting better and Soccertese’s about inner conflict. So many of you are articulate and thoughtful. The depth of responses has been amazing!

I, too, am getting better even though it has been nearly nine years since diagnosis. I had a story that could have been added to Soccertese’s list of PWP who experienced trauma and inner conflict and I, too, was (and still am) someone who “does” for other people. I had years of PD struggle – of not being able to walk to the end of my driveway, of not being able to get up out of a chair or up from the floor, of falling face first in the road, of wildly flapping tremor and fatigue and depression. But my symptoms are now under wonderful control and a person looking at me today would never guess that I have PD. I’m even starting to wonder about myself (chuckle); maybe I don’t/didn’t have PD after all? My world has expanded far outside the world of PD and I have a greater sense of wellbeing than I have had in my entire adult life. I wrote a post a while back about what works for me and why I feel I am doing so well. Having been accused previously of being a Pollyanna, it felt risky to write it but I shared in the hope that it would help someone.

In contrast, as the leader of a group providing support to people with PD and their caregivers, I have seen six people die of complications from PD and I have several friends now who are suffering mightily with severe and advanced PD. One person’s life is ruled by the “hollow people” (hallucinations) that follow him every day. Another tries desperately to communicate with me by phone from another part of the world, but I can rarely understand her weak voice as she dyskinetically weaves away from the phone. A caregiver just had to make the heartbreaking decision to put her husband in a nursing home because she could no longer manage the physical and emotional strain of caring for him at home. I could go on describing these folks, but it is enough to say that I worry about them terribly. They seem to be on a downward spiral. Progression is sure and swift. And there is nothing others or I can do to help.

So how does one reconcile one’s own “improvement” with the pain and suffering of others? Why am I the lucky one? And because I know what works for me, why can’t it work for someone else? Why am I able to, in Fiona’s words, move toward healing and why can’t that work for others? As Indigogo suggested, how do we get out of the “box” of PD and see the horizon?

Judith