Managing medication in PD – both complex and simple?

One of my containers for my morning doses with one morning dose laid out.

Taking medication for Parkinson’s disease (PD) sounds simple: just follow your prescription, take your pills on time, and you’ll be fine. But the reality is far more complicated. I take my meds every three hours just to be able to move, function, and work—but figuring out the right schedule has been a long process of trial and error.

There is no research comparing different approaches to medication timing, and neurologists rarely ask about the adjustments I make between visits. Yet, those small changes—like shifting a dose by 30 minutes—can make the difference between feeling functional and struggling with symptoms.

Despite its importance, optimizing PD medication is an under-researched field. Why? Complexity, money, and the illusion of simplicity. This post explores why managing Parkinson’s meds is harder than it looks and why PwP are often left to figure it out on their own. Because in the end, it’s not just about taking pills—it’s about living well.

Understanding Parkinson’s: The curse of knowledge

I just realised that I have probably been suffering from the “curse of knowledge” when trying to explain Parkinson’s (PD) to people. With this I mean that things that are obvious to me are probably not as obvious to others when it comes to understanding Parkinson’s. Let me demonstrate with a few examples: Biomarkers in…… Continue reading Understanding Parkinson’s: The curse of knowledge

This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try”

Image copied from: http://healthecommunications.wordpress.com/2012/02/02/patient-engagement-versus-physician-engagement-which-comes-first/

(This blog post is also available in Swedish =>> here) Most people living with Parkinson’s disease take a lot of pills, multiple times a day. After having Parkinson’s for a while, it’s not uncommon to be prescribed 3-4 different types of medications to be taken in various combinations 4-6 times each day. One of my…… Continue reading This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try”

Patients’ experiential knowledge and expertise

Image generated with ChatGPT 4o using the following prompt: "A scene depicting two individuals side by side. On the left, a person is reading a book or manual, symbolizing theoretical knowledge. On the right, another person is engaged in a hands-on activity, such as fixing a car, cooking a complex dish, or navigating a challenging hiking trail. The person performing the task is confident and skillful, illustrating their experiential expertise gained through direct involvement and personal experience."

I recently came across a very interesting scientific article, published almost 50 years ago, with concepts that are definitely still relevant and important today: Borkman, T. (1976). Experiential Knowledge: A New Concept for the Analysis of Self-Help Groups. Social Service Review, 50(3), 445–456. https://www.journals.uchicago.edu/doi/10.1086/643401 I have been a chronic disease patient now for almost four decades and a…… Continue reading Patients’ experiential knowledge and expertise