How old were you when you were diagnosed?
I was 58 when I was diagnosed, and I am now into my sixth year of “diagnosis.” Most PD experts believe, however, that the disease process begins years before symptoms, like tremor, show up. So no one knows how long I have actually have had it.
What did you experience when you were diagnosed?
Like many of us do during crisis in life, I headed to the computer. I wanted fast answers to things like; what is this disease? Is it going to kill me and when? Where can I find hope? Are there new cures on the horizon?
Being informed helps deal with the emotional as well as the intellectual toll the disease takes. Reading about PD, and going to seminars given by the many who make the cure and coping with PD their life’s focus. I find belonging to what Author John Palfreman calls “The tribe” of PD patients gathered together in support groups very helpful. We are special people.
What do you do for yourself?
Of course, groups notwithstanding, one has to take personal responsibility for at least the slowing of the PD process. Thus for me, exercise is the man thing that helps. I think staying physically healthy is, as someone once said, “The slowest way to die.” So far, so good. I mainly walk on a regular basis, and try to eat healthy. Stress is the enemy of good health for Parkinson’s patients. I have tried to limit the things I commit myself to and try to limit the stress of those things I do chose to do.
What has not helped?
PD is a moving target. Some things meant for treating our symptoms simply don’t work for some of us. Sometimes the things that do work eventually stop working. I try to focus on the things that work at any given point in time.
What have you learned from having PD?
As a pastor, having Parkinson’s has helped reinforce the craft of being empathetic, seeing through any disease that a person might have and seeing their fundamental personhood. We all die. Yet none of us know how to travel that journey to its ultimate destination. It seems to me if we can become the most empathetic person we can be, we are doing God’s work and helping walk beside others on their particular journeys.
What would you like to say to others?
Don’t disregard people who are challenged in any way. Give them the gift of their individual personhood. We are all like infants at both ends of our lives. We will likely need similar care at each end. The born and the dying are equally special people of God.
What would like others who don't have PD to know?
At a practical level, we Parkinson’s types will need some assistance from others from time to time. This can be a tricky business. Too much help can feel condescending. Too little can make us feel ignored. Again, as we are humans like any other healthy human, think about negotiating with us on the help we might need. Include us in the conversation.