One of the many issues that Parkinson’s Disease patients often have that no one understands are good days and bad days.
So many times, Parkinson’s Disease patients come into the office and the patient or family says, “Today’s a good day, he’s not usually this good at home.” “Today’s a bad day. Usually he can walk a lot better than you see.” I have given up trying to figure out what makes one day good and another bad. They seem to occur pretty randomly. These variations are very different than the variation that occurs during the usual day. “Mom’s good in the morning but by the afternoon she gets more tired and weaker and doesn’t move well by the end of the day.” “Dad’s always terrible in the morning so we schedule everything we can for the afternoon because he’s usually doing well then.”
The variations that occur during the usual day I sort of understand. In some people it takes a while for their brains to get a decent amount of dopamine stimulation going to get them moving again. In others the day’s activities slowly sap the strength out so they start strong and end weak. Among Parkinson’s Disease patients who have problems with their memory, it is more common than not for their confusion to vary quite considerably over the course of the day.
Some patients are said to experience a “sleep benefit.” They wake up in the morning at their best level of function during the entire day, even before they’ve had their first dose of medication. This so called “sleep benefit” seems like an obvious sort of reaction. You sleep well so you wake up feeling refreshed and strong. But it turns out that this isn’t true for most patients. Despite having a good sleep, they may still awaken in the morning, feeling very weak until they get their first, second or third dose of medicine into them. Sleep does not benefit everyone with PD.
Understanding why some days are good or bad is still a mystery
I understand the fluctuations that Parkinson’s Disease patients experience during the day as reflecting their medication levels, their activities, their sleep, their social interactions and a number of other social and physical stresses and strains that I don’t know about. But I have little idea of why the average Parkinson’s Disease patient will tell me that they’ve had a good few days or a bad few days, without any noticeable change in their medications or in their environment. Although I don’t understand these variations, I try to teach my patients that after we make a change in their treatment regiment, to give the change a week or so, if possible, to see what changes occur. When they report that the change resulted in a decline the first day, I ask for patience, since many a patient will have such a decline without a change in anything. We need to see a pattern emerge, and that may take a week or so.
If any patients have figured out what makes a good or a bad day, I’d love to hear from you.