by Sara Penhale
“Doctor knows best.” Not so long ago, this was the prevailing attitude about making health care decisions. The doctor was the expert who made the diagnosis and initiated the treatment; the patient played only a small role in decision-making. But this approach won’t work with Parkinson’s disease. The person with Parkinson’s must be fully engaged in recognizing symptoms, assessing their severity, and deciding if a treatment is working.
Patient involvement is necessary due to several characteristics of Parkinson’s. First, there are a great many symptoms and each person’s combination is unique. Second, there are no means of objective assessment for many symptoms. For instance, there is nothing equivalent to measuring blood sugar levels for diabetes. Instead, the doctor makes subjective judgments based on observations of the person. Thus, muscle rigidity is assessed by a sort of “police sobriety test” for which the person touches his or her finger to their nose, walks a straight line, etc. The doctor watches the person and uses his or her clinical experience to assigns scores.
Finally, some symptoms are not observable by the doctor and must be described by the person with the disease. For me, this meant I had to try to describe the creepy feelings in my legs and the impatient urge to move them around. My neurologist recognized this as restless leg syndrome and prescribed medication.
The bottom line is that for most Parkinson’s symptoms, the person with the disease needs to provide the crucial information. We are the ones who deal with those symptoms daily, and we are the ones who can describe them best. In other words, while the doctor is indeed the expert on the pathology of Parkinson’s and modes of treatment. You are the expert on “you.”
It is crucial to arrive for your doctor’s appointment with the best description of your symptoms possible, thus providing the information the doctor needs for designing a treatment plan. This can be difficult because many symptoms are complex. I recently experienced some mild dyskinesia, the condition in which your torso and limbs move about erratically, sometimes gracefully and sometimes forcefully. There are multiple variations of dyskinesia. One occurs just before you take your dose of carbidopa/levodopa when your blood levels of the drug are at their lowest. Another type of dyskinesia comes on when the drug is at its peak. I learned this when I tried to describe my dyskinesia symptoms to my doctor. He asked about its timing with respect to when I took my pills. I didn’t have an answer, I didn’t know I should keep track of that.
You can even be confused about whether something is a Parkinson’s symptom or not. Early on, I was so scared of the disease that I convinced myself I was experiencing cognitive decline, the symptom I fear most even now. I fussed enough that my doctor, who thought I was okay, sent me off to be tested. I scored perfectly fine; that is, for people in my age range. In other words, any slips of memory I have may just be normal aging, not symptoms of Parkinson’s.
So much to learn. So easy to be confused. Fortunately, there is a lot of information about symptoms to be found online through many Parkinson’s organizations. Read about the symptoms you have at present and glance through unfamiliar ones. Track your own symptoms in an on-going journal or compile your observations using checklists and worksheets from the Parkinson’s websites. Try to keep up with the note-taking since it’s awfully hard to remember what transpired after time has gone by. The resulting picture of your condition with have the details and clarity that the doctor needs. Being the expert on “you” leads to a better shared understanding of your condition and ultimately a more effective treatment plan. Together, you and the doctor know best.
American Parkinson’s Disease Association