"Good Days and Bad Days" with Parkinson's Disease
A common tale often told in my clinic is the marked difference some people experience from day to day in their control of PD symptoms. Although not described in neurological textbooks, the “good day/bad day” phenomenon is a puzzle that has engaged my curiosity for years. Patients who find that their tremor or slowness of movement or other symptoms (including non-motor symptoms) shows marked variability despite stable medication regimens generally have no obvious explanation for the seemingly random nature of these day-by-day experiences.
Medications used for PD are commonly associated with fluctuations in control of both motor and non-motor symptoms and so the “good day/bad day” experienced might seem to be explained by the behavior of the drugs alone. The usual culprit for this problem is levodopa itself, which is a relatively short-acting drug in its immediate-release form. As the years go by in levodopa-treated patients, irregular effectiveness becomes especially common. However, the vagaries of levodopa effectiveness are not what I mean by the “good days/bad days” phenomenon – in fact, variability in medication effectiveness can disguise or confound this problem. The experiences are sometimes more global than just the increase of tremor or slowed gait that characterize a temporarily diminished medication effect. A “bad” day for many patients is far more profound, something that could be described as a day when “…there was no wind in my sails…” or something like that.
Certain problems common to everyone may provide some explanation for the “good day/bad day” experience. For example, missing a night’s sleep, having a gastrointestinal illness, or experiencing a great deal of stress can interfere with how well anyone functions. Yet, the unpredictable experience of many hours in a “down” state followed by the spontaneous return of good mobility makes me want to understand more about what underlies this type of fluctuation reported by so many persons with otherwise stable PD and good medication responsiveness. Several types of diurnal (that is, occurring throughout the day) fluctuations in PD are well-known. For example, some patients experience “sleep benefit”, which is the surprising emergence of near-normal functioning (that is, full relief of Parkinsonism) immediately upon awakening in the morning. An episode of “sleep benefit” can last from 30 up to 120 minutes and can be a daily occurrence. Not everyone with PD experiences “sleep benefit”, however, and generally it doesn’t follow napping during the day. “Sleep benefit” is just one more clue that we have a lot to learn about the day-to-day and even hour-to-hour symptomatology of PD. Corresponding to “sleep benefit” is another puzzling diurnal experience for some PD patients that I have been termed the “end-of-the-day crash.” What is meant by this terminology is a predictable decline in mobility or re-emergence of tremors as the evening approaches. This can occur despite regular intake of medications that, during other times of the day, perform perfectly well in reversing Parkinsonism. Patients experiencing the “end-of-the-day crash” generally report not being particularly fatigued or tired. It can emerge before or after the dinner meal. Both of these experiences illustrate that living with PD has experiences that escape the logic of regular benefit from a routine schedule of pill-taking targeted at symptom control.
So, one starting point for understanding the “good day/bad day” phenomenon is for more thorough study beyond simply the timing and doses of medication. Though fluctuations in benefits of levodopa for control of PD symptoms from hour to hour are typical, other momentary problems of PD can be more capricious. One example is “freezing” of gait when starting to walk or turn. “Freezing” can have uniquely situational triggers for its occurrence (such as starting to walk or coming to a doorway). Another poorly-defined problem of chronic PD has been termed the “on-off” syndrome. Patients with this condition sometimes fail to achieve full medication benefit, sometimes for hours at a time. Although the explanation for such fluctuations might be attributable to the failure of regular levodopa absorption, other mechanisms may be operative. Fortunately, to test out the possibility of impaired levodopa absorption, use of an injectable medication called apomorphine can rapidly reverse immobility when levodopa hasn’t been absorbed.
It would be useful for patients experiencing “good day/bad day” phenomena to share their insights into their personal stories. This problem can add to the many challenges that PD imposes on gaining full control of this disorder. In their planning for work and other activities, patients and their families may need to include the possibility of hours and even entire days that will lack the usual good responsiveness offered by PD medication. The problem of fluctuations in motor function and other aspects of PD have not escaped the attention of researchers and perhaps a future report on “good days/bad days” will not just be a description but, rather, a prescription for its management.
Peter A. LeWitt, MD presented at the Third World Parkinson Congress in Montreal, Canada and the Fourth World Parkinson Congress in Portland, Oregon. He currently directs the Parkinson's Disease and Movement Disorders program at Henry Ford Hospital and is Professor of Neurology at Wayne State University School of Medicine.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®