The “I” and “we” in this post are composites of my own experiences and those of the many Parkinson’s patients I have talked with since my diagnosis in 2014. This column is dedicated to the memory of the late Dr.Thomas Graboys, an extraordinary Boston physician who died with Parkinson’s disease. His legendary dedication to patient understanding and welfare is reflected in the care model I discuss.
D-Day, diagnosis day, for my Parkinson’s was a disaster. Your words destroyed my rationalizations about what was causing my problems. Suddenly, I have a progressive neuromuscular disease, one that’s treatable but not curable.
I pressed you on prognosis. “At your age of 75, something else will kill you first,” you finally said. Your smile suggested humor. I found nothing funny or comforting in the words. Neither did a friend who was told on her D-Day: “You will only feel worse as this progresses.”
Another friend went to pieces after her D-Day.
“My life began to unravel,” she recounted. “I became reckless, hell-bent on having a good time before the disease took complete control. I shopped libreathing
choirke crazy, partied and drank hard. I ignored mundane tasks, like paying bills and taking care of my house.”
Most of us only were told to follow instructions for beginning the medication carbidopa-levodopa and to return in three months. By that time, our response to the medication would seal the diagnosis. No other readily available laboratory test exists for PD.
That was it. Session over. No words about diet, exercise or any real information on the disease.
Your short message may be OK for other disease diagnoses you make. But I wanted and needed more from you because Parkinson’s often is a progressive wasting disease that would affect every aspect of living, as I had known it.
I wish you had said words to this effect, as Thomas Graboys did with his patients: “We are in this together. I will walk with you the whole way. I’m writing down my home number. Call when you need me.
“Here’s a short brochure providing you essential information about the disease, places to seek additional, verified information and a brief description of an organization available to you for your journey. The brochure briefly describes sharing your diagnosis with loved ones and others. I want you back in one month to dig more deeply into all this.”
You would say 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, you would say: “We will develop on that next visit what I call the ‘plan.’ ”
I wished you, my physician, would explain how there is an organization I 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 my needs.
You would say you would work closely with the organization to see that care provision was customized as needed. You would reduce my anxieties and provide an organizational anchor point where my needs would be met.
You would write out the medications you were recommending and what they were for. You would ask me what I thought was a reasonable exercise regimen within my abilities. We would discuss dietary and other lifestyle changes that would help me enhance my life. You would call it the “plan.”
It was the “contract” between you and me 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 would inspire hope in me because implicit was the message that there were things I could do to take control of my illness.
Indeed, while there may have been three hundred words on that page, it really was just one: “hope.” The written plan would inspire hope that by following the instructions I could enhance my chances of living out a fairly normal life.
The Graboys approach and the Graboys “plan” are the exception in most clinical settings today.
The result is documented, widespread confusion among PD patients about their condition. A 2014 Harris survey of Parkinson’s patient showed that only 57% feel informed about how PD commonly progresses; just 46% feel informed about treatments for non-motor symptoms; and 54% feel informed about treatments for motor symptoms.
In other words, a stunningly high number of PD sufferers don’t understand what’s staring them in the face and what’s ahead for them.
The dedication of physicians for their Parkinson patients is not in question. In fact, as my Parkinson’s Disease Foundation colleague Kirk Hall has written, we PD patients owe the medical community a large debt of gratitude. “Many of these folks, whether they be doctors, nurses, researchers or technicians, work very hard to meet our needs in challenging circumstances (long hours, limits on length of patient visits, heavy patient loads, emergencies, bureaucracy, and unending paperwork.)”
What’s needed is a system for Parkinson’s care that those dedicated professionals can utilize. We don’t have it now but need it as soon as humanly possible
Check two workshops for Parkies. One for breathing exercise and the second for singing. Therapists are on both to slow the progression of PD. The word comes from speech therapist Cara Bryan, a Florida Hospital-Tampa stalwart, who is leaving FHT for private practice. Her many fans wish her the best. Click each for more info.