I was obsessing about my fears and worries about having Parkinson’s Disease (PD) yesterday, when I received a phone call from a woman who was considering joining a PD support group. She was trying to determine the level of functioning of the group members. She attended another PD support group many years ago, everyone was so much worse than her, and it was depressing. I tried to reassure her that there were a number of high functioning members in this group, that everyone with PD exhibits different symptoms, and each person’s PD progresses at different rates.
But I missed the fear in her voice about what’s ahead for her with PD—how will her PD manifest itself, how quickly will her PD progress and ultimately when will she die from/with it.
I had a similar experience 11 years ago. Two days after I was newly diagnosed with PD, my husband Tom and I attended a PD support group geared for young-onset patients. We couldn’t remember much about the content of the meeting, but what we observed will stay with us forever. Some people’s arms and legs were writhing and flailing, others were squirming, and one patient was in a wheelchair. We freaked out, left early during a break and had nightmares for three nights.
If this was going to be my future with PD, I didn’t want any part of it. I avoided all PD support groups and scheduled my neurology appointments early in the morning to avoid the shaky folks living with PD. I led my life based on Sir Winston Churchill’s quote: “Men stumble over the truth from time to time, but most pick themselves up and hurry off as if nothing happened.” My magical thinking sometimes went like this: “If I didn’t talk about PD or see people with PD, then I didn’t really have it.”
My biggest regret was not being open about having PD sooner. I missed opportunities to help myself and provide support to others.
I hope the woman who called yesterday decides to attend the support group. I trust that she will realize, as I recently have, that there is support for her in good times and in bad times and that we are all on both sides of the fence at some time in our lives.