One hard thing about having PD (or any mysterious, poorly understood condition) is that there’s no road map. The conventional treatments are ok as far as they go, but unsatisfying: no one knows how the disease works, or how to cure the damned thing. The conventional treatments - drugs, surgery, and exercise - can treat symptoms but can’t stop the progression of the disease. Speaking for myself, this can be hard to to face.
But if I’m not satisfied with the limits of conventional treatment, what is there to do? My first approach has been to keep researching and trying new therapies, everything from supplements to diet to energy medicine, and a lot of other things as well. This has been engaging and interesting, and has perhaps even somewhat helpful, especially with improvement to my overall health.
But it hasn’t had much if any impact on my PD symptoms, and it sometimes seems to have been mostly a means to keep my mind busy and off the despair. It also strikes me that this approach is based entirely on a model of struggle against PD, and has left me feeling alone. The irony of this situation makes me uncomfortable: being an engaged patient is playing right into my inclination to avoid my emotions and keep it together at all times.
A different approach has been to get to know and listen to other people with PD. Recently I’ve begun a project to help break down stereotypes about people with PD, using the mechanism of portraits, along with interviews in which my subjects talk about what they’ve experienced and what they’ve learned. The experience of meeting these people and hearing their stories and their wisdom has been incredibly inspiring. I’ve been especially struck by the fact that everyone I’ve interviewed so far has continued to live a good life, with humor and determination, even after many years with PD. This project can be found here.
I doubt if I will ever stop trying to learn more about PD or trying new therapies. But this second approach, which is based on acceptance, relaxation and camaraderie, is meeting a need which I never really recognized that I had.