Until there is a cure, it's all about quality of life...
Why treat the symptoms of Parkinson’s or any other disease for that matter? Why initiate treatment at a particular time? What is our ultimate goal? The answer is very clear - it’s all about quality of life.
Quality of life may be defined as the perceived quality of a person’s daily life, including the physical, emotional and social aspects of their life experience. And how that translates into real terms varies from person to person. What issues that need to be addressed in order to improve my quality of life will potentially differ from those issues that are a hindrance to you. For example when I had a really busy day in my practice or when I worked in the urgent care, an extra 30 minutes or an hour of tremor free time allowed me to function well and continue my clinical responsibilities. However for an elderly person, now retired, the most bothersome symptom may be constipation or anxiety which, if resolved would result in a greater enjoyment of life. And those parameters by which you judge your quality of life can change even during the course of the disease. Your needs and goals may change with time. Once I stopped working, I was no longer willing to suffer the side effects of the medication and instead tolerate the tremor, which under the current circumstances is less of an issue.
Quality of life truly is the primary endpoint that should motivate all decisions when it comes to our medical care.
Sometimes however the medical community falls into the trap of treating symptoms instead of the patient. As a physician I know this may happen inadvertently from time to time. Yes it is a positive result if a patient’s tremor is less on a certain medication but is it a successful outcome if that therapeutic intervention results in uncomfortable side effects or fails to address a totally unrelated symptom that is causing the majority of the disability in that patient’s life? Is it enough to treat what we are used to considering the hallmark symptom of a disease or should we not be placing highest priority on the complaint that is affecting the patient the most? Which when improved, results in a noticeable improvement in the quality of their day-to-day lives?
Only you know how this disease is affecting your quality of life and what your goals are in terms of your life experience. Therefore it is up to you to convey this information to your physician in an effort to reach those goals and optimize your quality of life. Any symptoms or combination of symptoms that interfere with those occupational, social and recreational interests that make you who you are, that give you pleasure and enjoyment, can be said to compromise your quality of life and must be addressed.
So in addition to the normal information on your symptoms, treatment effectiveness and side effects, you must also relay your general impression of how the manifestations of Parkinson’s are impacting your life overall and which symptoms specifically interfere the most. Perhaps despite your tremor, you’re functioning quite well and you don’t want to risk the side effects of increasing your medication. Or maybe the tremor is so significant that it is compromising your ability to eat or your duties at work. Information on how your symptoms are interfering with your activities must be addressed by your medical team if you want to truly live well with Parkinson’s disease.