An inside perspective of Parkinson disease

In this issue of Canadian Family Physician, Frank et al discuss Parkinson disease and remind us of its importance (page 20).¹ It is currently the fastest growing neurodegenerative disease worldwide.² The authors remind us that diagnosis is, first and foremost, clinical. It is based on a triad of symptoms: rigidity, tremors, and bradykinesia. This is, indeed, a fairly characteristic presentation, and just seeing a person’s slowed movements and facial expressions, smaller steps, lack of fluidity, rigidity, and usually unilateral rest tremors is enough for an experienced family physician to suspect the presence of this disease.

But is it really as easy as that, especially at the onset?

I will always remember my colleague who wanted me to be his family physician. Despite my reluctance and objections, he insisted. One day, during an annual preventive examination, he confided to me that his eyelids spasmed from time to time. Ah! OK! Nothing serious. Just a minor concern. What is the differential diagnosis for intermittent eyelid spasms? Do not tell me that you would have immediately thought of Parkinson disease. I did not. Or at least not at that moment. Then, a few months later, he had a strange fall while riding his bike. In fact, he fell while getting off his bike. It was as though he no longer knew how to do it! Someone in the group decided to remind him how to get off his bike! At his age! After all the bike camping trips he had taken! That day, I came to suspect that my colleague might have Parkinson disease. I referred him to a neurologist who said that, no, that probably was not the case. OK, well, if the specialist said so!

The following summer we went to play tennis. He had always been a formidable tennis player. He could deliver devastating volleys at the net. But it was during that match that I knew something was very wrong. At one point, after I returned a forehand shot to his right, I noticed a delay in his movements. I could almost have counted to 3 before he started to react. That day, it became obvious to me that he had Parkinson disease. This time, the neurologist agreed. It just goes to show that recognizing the full clinical picture is not always easy.

The diagnosis came and, with it, his life inexorably descended into a living hell. The loss of autonomy. The loss of pride. The loss of everything. Even as he did everything he could to avoid further decline and delay progression by actively participating in support groups and organizations dedicated to Parkinson disease. Nothing worked. The medication seemed to have only a transient effect. Sometimes, we would go out to a restaurant. I would pick him up at his place. He would take forever to put on his shoes and lace them up. He refused all help. Then, after leaving the restaurant, we would drive back to his place. Trying to get into the car would often trigger an “off” episode. It is well known that patients with Parkinson disease can sometimes switch from “on” to “off” within a fraction of a second. He would sit frozen in the passenger seat as though transformed into a pillar of salt, incapable of moving, incapable of buckling his seatbelt, incapable of doing anything. I would fasten his seatbelt and drive him back to his place, both of us feeling awkward and uncomfortable.

Then, all his greatness, all his intelligence, all his charisma progressively evaporated. Disappeared. The man was there but his essence was gone. One day, he asked for it all to stop. And that was the end.

Parkinson’s is a terrible disease. A devastating disease. Family physicians are often the first to suspect and then confirm a diagnosis. They are the ones who, along with specialists, follow the evolution of the disease and adjust treatments. In the end, they are also the ones who witness the ensuing decline, provide comfort care, and participate in end-of-life decisions. When I think back, I ask myself whether I could have done anything differently. Would an earlier diagnosis have changed anything? Would starting treatment earlier have been beneficial? Family physicians bear a great responsibility.

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