Category: In English

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

Patient self-experimentation makes the headlines!

Frontispiece engraving showing Sanctorio sitting in the balance that he constructed to determine the net weight change over time after the intake and excretion of food stuffs and fluids. Credit: Wellcome Library, London. Wellcome Images images@wellcome.ac.uk http://wellcomeimages.org. Copyrighted work available under Creative Commons Attribution only licence CC BY 4.0 http://creativecommons.org/licenses/by/4.0/

What is self-experimentation? Sanctorio sitting in the balance that he made to calculate his net weight change over time after the intake and excretion of foodstuffs and fluids. Self-experimentation is a type of single-subject research where the researcher and the research subject are one and the same. This is a practice with ancient traditions and…… Continue reading Patient self-experimentation makes the headlines!

“Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking” as a podcast

This is a podcast version of my published scientific article "Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking" (https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181314) created by Google Notebook LM.

This is a podcast version of my published scientific article “Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking” (https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181314) created by Google Notebook LM.

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”

“Empowering patient research” – an Aeon essay by Charlotte Blease and Joanne Hunt

Image from aeon.co

I am happy and proud to be mentioned in this excellent essay on a topic very important to me: https://aeon.co/essays/we-need-the-first-hand-experience-of-disabled-researchers

Classification of patient knowledge

Classification of patient knowledge by source of learning. (From: Dumez, V., & L’Espérance, A. (2024). Beyond experiential knowledge: A classification of patient knowledge. Social Theory & Health.)

I vividly remember the first time I realized that my neurologist and I are in possession of vastly different although complementary types of knowledge. At the time, I had been a patient of his for a couple of years and in between appointments, I would write my questions about Parkinson’s disease (PD), my treatment, and…… Continue reading Classification of patient knowledge

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

“Do you want to drink cappuccinos or do you want to get well?”

Even though the notion of shared decision-making in healthcare was first mentioned in scientific literature already during the 1970s, the main development in the field has taken place since 1997, when the well-cited article “Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)” by Charles et…… Continue reading “Do you want to drink cappuccinos or do you want to get well?”

WPC2023: “To track or not to track”

In July I was in Barcelona to attend the 6th World Parkinson Congress or WPC. As expected, it was a few very intense days with many impressions and interactions. One of my commitments was to speak in a morning plenary session. It was the start of day 2 of the conference and there were people…… Continue reading WPC2023: “To track or not to track”