Thomas Graboys, M.D. was a beloved Boston cardiologist who struggled for many years with dementia connected with Parkinson’s disease. He died with it this year.
He famously wrote a book, “Life in the Balance: A Physician’s Memoir of Life, Love, and Loss with Parkinson’s Disease and Dementia.” It bared his innermost thoughts and emotions about what Parkinson’s and advancing dementia feel and look like.
I reread the book recently. I imagined how he would break the news of a Parkinson’s diagnosis if he were a neurologist and not a cardiologist.
All of us end up in the neurologist’s office with a variety of seemingly unrelated problems. That’s one of the many things that makes PD so frustrating. Like
snowflakes, each case of is different.
When the doctor’s verdict is rendered, Parkinson’s disease, it is the day we will never forget. For some like me, there is a momentary sense of relief that the accumulating symptoms have a cause and a name. For others the reaction is terror, shock and confusion.
We ask what does this mean for us? A brusque answer one of us received was “your symptoms will only get worse.” In my case, the answer was “at your age of 75 something else will kill you first.” Few of us received information beyond the diagnosis that day.
Commonly, we leave the doctors office with a pill prescription and instructions to return in three months. We are on our own. We get no literature explaining what Parkinson’s disease is, what we can do about it and what our future holds.
What if Tom Grayboys had had been the one delivering the news? He would have taken the time to give us a short explanation about the disease, encouragement about the therapies available to treat it, some information about the importance of exercise and diet.
He also would have given us a set of instructions about exactly where on the Internet we could find reliable information, where exactly and what specific exercise we should seek, and information about support groups in our area. He would tell us that patients who do well with the disease don’t let it own them—they own and control it. You don’t have to do this alone, he would say.
Graboys would not have done this from behind his desk but sitting close to us in a reassuring matter. He would have written down on a piece of his stationary his home phone number and told us to call anytime we needed help. He would not have said to return in three months but in one month. Then we would discuss what we had read and the questions we had concerning it.
Graboys would also explain at that next meeting how there was an organization we could join that would have regular educational seminars about PD, special programs for caregivers and recommendations on finding the physical and other therapists who could attend to her needs. He said he would work closely with the organization to see that care provision was modified as needed for each of us.
The Graboys approach would reduce our anxieties and provide an organizational anchor point.
Graboys would write out the medications he was recommending and what they were for. He would ask the patient what he or she thought was a reasonable exercise regimen within their abilities. We would discuss dietary and other lifestyle changes that would help us enhance our life. He would call it the plan.
It was the “contract” between Graboys and the patient that, if adhered to, would help ensure a positive outcome. And because the plan was personal to each patient, it was more likely to be honored. Just leaving the office with that plan in hand inspired hope because implicit in that plan was the message that there were things the patient could do to take control of their illness. Indeed, while there may have been three hundred words on that page, it really was just one: “hope.” The written plan inspired hope that by following the instructions we could enhance our chances of living out a fairly normal life.