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.

Nej, vi är INTE alla patienter!

Idag medverkade jag i en panel på en digital konferens om den svenska life sciencestrategin och hur arbetet kan/bör/ska fortgå framåt för att “kraftsamla och göra verkstad” med “patientnytta i fokus”. (OBS: min användning av citattecken är inte ironiskt menad, det är faktiska citat från konferensen.) Jag har medverkat i rådgivande grupper på departementsnivå sedan…… Continue reading Nej, vi är INTE alla patienter!

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

Uppdatering av Helsingforsdeklarationen

Visst känner du till Helsingforsdeklarationen? Den antogs första gången för 60 år sedan av World Medical Association (WMA) och fastslår ett antal etiska principer att beakta i medicinsk forskning. Helsingforsdeklarationen är inte juridiskt bindande men har haft stor inverkan på lagstiftning och regelverk i hela världen, inte minst i Sverige. I samband med WMA:s 75:e…… Continue reading Uppdatering av Helsingforsdeklarationen

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.

“Vill du dricka cappuccino eller vill du bli frisk?”

I vården pratar man ibland om “delat beslutsfattande” (shared decision-making på engelska). Det innebär enligt en rapport från SKR (länk): “Delat beslutsfattande eller shared decision making är ett arbetssätt för att öka individers delaktighet i vården och omsorgen. Metoden hjälper personen att ta en aktiv roll i beslut om den egna hälsan och om behov…… Continue reading “Vill du dricka cappuccino eller vill du bli frisk?”

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”

Därför är patientmedverkan viktigt i utvecklingen av vården eller “Det verkar besvärligt men om du verkligen vill så kan du få prova”

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 English =>> here) De flesta som lever med Parkinsons sjukdom tar många piller, ofta flera olika sorter och flera gånger varje dag. När man haft Parkinson ett tag så är det inte ovanligt med 3-4 olika typer av mediciner som tas i olika kombinationer vid 4-6 tillfällen varje…… Continue reading Därför är patientmedverkan viktigt i utvecklingen av vården eller “Det verkar besvärligt men om du verkligen vill så kan du få prova”

“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