Medication management is probably the absolutely most important part of my Parkinson’s disease (PD) selfcare since without my pills, my body would not function. During the day I take meds approximately every three hours to be able to move around, take care of myself and be able to work. When I wake up in the morning, I have not taken any meds for at least 7 hours and my movements are REALLY slow and stiff.
My approach to PD is that I try to take my meds at the same times every day. I know that other persons with Parkinson’s (PwP) have other approaches and no-one really knows which approach is best, since there has been no research conducted (or at least not published) comparing different approaches (which is actually one of my main reasons for writing this post).
When I occasionally make changes to my medication regime, I note down dates of the change and what I changed (for example types of meds added/taken away, changes in timings for intakes, and/or changes in combinations of meds for each intake). For example, a few months ago I noticed that I tended to get slightly dyskinetic (a side effect of PD meds, see here) around lunch so I decided to push my second dose of meds 30 minutes and started taking it at 10:00 am instead of 9:30 am. This changed resolved my dyskinesia. These notes are for myself, none of my neurologists have ever asked about changes I have made between visits, they have only shown an interest in my current regimen at the time of the visit. I can completely understand this, they have enough work to do as it is and don’t need more tasks to complete. Of course there is plenty that could be learned from systematically recording individual medication regimes for a large number of persons with Parkinson’s (PwP) including following up the effects of that regimen on an individual level but I have long since accepted that that is probably not the best use of healthcare resources.
In my role as an academic researcher, I have applied for funding many times over the past decade to address different aspects of how to optimise PD meds on an individual level. Unfortunately my funding applications have not really succeeded despite the fact that this area is extremely under-researched. I think there are several reasons for this apparent disinterest in the field of medication optimisation in PD and I will mention the three at the top of my mind:
1. Complexity
PD is SUPER COMPLEX! We have heard this so many times but what does it actually mean? The complexity of PD is multi-layered and there is so much we currently don’t know. We don’t know how and why the condition starts on an individual level, we are not sure about what processes makes the condition progress, and we don’t know why some medications work well for some but do not work as well for others.
On the level of individual neurologists, I think that many of the clinicians who have made it their profession to help us actually think that medication intakes are already optimized based on available guidelines and their clinical experience. Those guidelines are however based on group-level data, and do not often translate well to individual patients. There is a huge gap between what is measured in research trials (which subsequently forms the basis of guidelines) and what PwP experience in their daily lives.
One aspect that is often overlooked is that taking medication is not as simple as just swallowing a pill at the right time. It requires remembering (which, ironically, can be difficult when you have a neurodegenerative disease), carrying medication with you at all times, for some PwP also planning around meals, and adjusting for unpredictable factors such as stress, sleep quality, and physical activity. Even something as basic as getting water to take a pill can be a challenge in certain situations. The effort required to consistently take PD medication is far greater than many neurologists or researchers realize.
Another factor adding to the complexity is that we living with PD are not really interested in taking the pills, we actually have zero interest in the actual pill taking itself. The reason we take them is to get the effect the pills (hopefully) have on reducing our symptoms. But what does healthcare use to evaluate this process? They use medication adherence, meaning if we take our pills in the way our neurologists have prescribed. As far as I know, there are no standardized adherence scales available that take into account the complexity of finding your individual best timings for intakes of meds to achieve the optimal effect.
And since this complexity doesn’t directly influence the work of neurologists and researchers, it’s not strange that they don’t see the need for research into how to best optimize PD meds.
2. Money
The reality is that the use (and non-use) of pharmaceuticals is (almost) entirely driven by money. And currently there is no money to be gained on a corporate level from helping the approximately 10 million PwP in the world getting a better effect from the many pills we take.
The pharmaceutical industry mostly hinges on developing new drugs, not on optimizing the use of existing ones. This means that the funding available for research favor the discovery of new molecules over the fine-tuning of treatment regimens for individual patients.
3. Simplicity
As a person who has spent more time thinking about this A LOT over the past 10 – 15 years, probably more than is healthy…, I have come to the conclusion that the main problem with the issue of medication optimization in PD actually is simplicity. More precisely, the illusion of simplicity. Medication adherence and effectiveness in PD are mostly treated as simple, binary issues: “Did you take your medication? Yes or no?” But in reality, it’s much more complex. Timing, food intake, stress levels, sleep quality, and countless other factors can influence how well our meds works.
Yet, our healthcare system is not set up to systematically track and adjust for these variables. Instead, PwP are mostly left to figure it out themselves, with trial and error as our primary tool.This means that many PwP, myself included, spend years fine-tuning our medication regimens without structured support. Some of us get lucky and find a pattern that works well; others struggle for years with inconsistent results.
In conclusion
For this area to develop, we need a better understanding of how PwP actually take their medication in daily life and not just how they are prescribed to take it. We need more research that focuses on the real-world challenges of medication adherence, from remembering doses to managing side effects and adjusting for the unpredictability of daily life with PD. We need a more nuanced discussion of what is working, what isn’t, and why. Until then, PwP will continue doing what we have always done: adapting, experimenting, and trying to make the best of an imperfect system.
It’s ironic that while Parkinson’s medication is one of the most researched aspects of the disease, the actual experience of taking it—the daily struggles, the trial and error, the constant balancing act—is still largely unstudied. The truth is, many PwP are experts in managing their own meds out of necessity, yet our knowledge remains anecdotal and undervalued in clinical settings. If we truly want to improve Parkinson’s care, we need to start acknowledging the experiential expertise of us who live with it every single day.
And no, there is nothing simple about managing PD meds – it’s complex all the way!
