Reflecting on my initial reaction when my neurologist confirmed a Parkinson’s disease diagnosis, I must admit I had no clue as to what to expect. While awaiting my first appointment I did a few internet searches and did get some meaningful insight into such things as symptoms, stages, treatments, drug use, and a lengthy list of notable PD’ers both living and deceased. Not much of my early research involved references to the timelines involved in various stages of the disease. So naturally, I began to speculate on my own timeline. I also decided to treat my PD “journey” metaphorically. Each PD stage would be a plateau. As with mountain climbing, the task becomes more difficult as one nears the journey’s end. Many never make it to the end.
It was not until I discovered the Parkinson’s disease Caregiver Information Forum that I began to wonder about how long the journey would be. As I began to review posts to the forum it was apparent many of the caretakers had been providing care and comfort to their patients for years. One post suggested the average to be about 15 years but the same source then advised of friends who have been involved for 25 and 28 years! I probably should have recognized timelines like those in my review of notable sufferers including Muhammad Ali and Michael J Fox. So naturally, I began to speculate on my own timeline.
The “good news” is that it will not be 20 plus years, unless by some miracle I can add to my current 76. The “not so good news” is that I will not be able to provide my spouse/caretaker with even a guess as to how long she must climb the mountain with me. It appears there is no way to measure the patient’s stage and then make a judgment as to remaining time. What is very clear is that mountain is a heck of a lot higher than I originally thought it to be. The Hoehn and Yahr staging lists five stages but does not refer to any time frames. I think I am in either stage 2 or 3 after about 2 years following my own estimate of onset PD. Because I am doing as much as I can to offset the effects of the disease, I suspect I could have been classified as a stage 3 by now.
I am reminded that PD does not result in the death of a patient. Death is more likely to be a byproduct of a serious fall, aspiration or choking or even pneumonia. Therefore, it seems to me PD patients and their caregivers must continually focus on the next plateau likely to be reached while recognizing mentally preparing for the next stage.
With an unknown mountaintop facing both me and my caregiver I feel we must learn to accept the unpredictable progression of this disease and accept the notion that there may not be a higher mountain than this one.
Editor’s note: Bob corresponded on our Forum, using the screen name Bandido1. Sadly, he passed away on April 7, 2012. Bob’s loss is deeply felt by all of us who knew him. His contribution to the causes of the Parkinson community have had profound impact.
Diagnosed in 2006, Bob was a Parkinson’s patient from North Texas. He was a Korean War Navy Veteran, graduated from Temple University in 1959 with a B.A. in Political Science and worked for 40+ years in the Trust Administration and Wealth Management field. Bob retired in 2001 as Senior Vice President of his company’s Los Angeles Office.Although medical problems reduced activities to some of his charitable volunteer work, he kept himself busy working as a Parkinsons advocate. Bob worked with the Michael J. Fox Foundation, the Parkinson’s Alliance, the Parkinson’s Acton Network and with the Obama Administration’s Health & Human Services Department in advocating patient input to a proposed National Healthcare Information Technology Database.