10th of August 2020



Why did Kevin McFarthing create the Hope List with data of ongoing preclinical research and clinical trials? What is he hoping for himself, 8 years after his diagnosis with Parkinson’s Disease? You can read all about it in a Q&A. Furthermore, I try to make some of the hope speak to even more of my readers with some drawings and vizzes. This lengthy blog post will conclude with a plea on the importance of opening up data FAIRly (Three blogs for the price of one ;)).

26th of June 2020


As of today, I am a Parkinson’s researcher with Parkinson’s. How that happened? Read more about it here

11th of June 2020

Liberating knowledge from the shackles of paywalls (Or why I love Alberto Espay)

In this blogpost, I tell you the tall of the amazing Prof. dr. Alberto Espay. He has opened up 32 of the closed access papers he co-authored in 2018 and 2019 as so-called green open access via the amazing tool www.shareyourpaper.org with no direct benefit for himself.

6th of May 2020


Musings about my struggles in #openscience advocacy

30th of April 2020

Bridging patient experiences and research

This article by Wybo Vons appeared in the PGOSupport newsletter in Dutch and has been reproduced on this weblog and translated into English with permission.

11th of April 2020

COVID-19, Parkinson’s and crossing the language barrier

30th of March 2020

Inflammation in noncommunicable diseases

A movie and a reflection

26th of March 2020

Parkyvist in the picture: Ruud Overes

12th of March 2020

Ending Parkinson’s Disease, the Dutch edition

8th of December 2019

Parkinson’s as a man-made disease. Part II. The piles of literature

This blog post is the second in a series of blog posts about the relationship between Parkinson’s disease and pesticide exposure. In this part, I explore the neurotoxicity of the two most used pesticides in the Netherlands and I try to formulate meaningful follow-up questions.

11th of November 2019

Never delegate hope

A plea to empower patients to decide what to hope for all by themselves.

16th of October 2019

Parkinson’s and the art of hitting CTRL-ALT-DEL

An interview with Willem Oudegeest

This blog focuses on the Parkinson rehabilitation program LSVT-BIG.

8th of October 2019

Parkinson’s as man-made disease

Part I: Un unfolding story

An introductory blog about the relationship between Parkinson’s and pesticides.

6th of September 2019

Mirror, mirror on the wall

A poem about the importance of fellow Parkies.

29th of August 2019

Parkinson’s and the flatland press

A critical analysis of scientific literature in which only a number of variables are taken into account and a suggestion to take a different approach.

20th of August 2019

Taming the pink elephant

A blog about panic attacks and Parkinson’s, the shame and the needed conversations in the treatment room.

25th of June 2019

The neuro-D-generation and the art of zooming out

What do ALS, MS and Parkinson’s have in common? How could science and care benefit from stretching the borders and looking for overlap between different neurodegenerative disorders?

30th of May 2019

Aligning scientist and patient efforts

On the importance of role fluidity

A blog about strengthening the healthy side of Parkinson’s patients to benefit science.

29th of May 2019

Depression and Parkinson’s

A common duo in the spotlight

A blog about the PhD research of Monique Timmer.

5th of May 2019

In search for the PD drive

Taking the red pill

A plea for a boost of self-direction by administering a serious diagnosis in which you simultaneously get a number of tools to relieve symptoms and possibly also to slow down neurodegeneration.

19th of April 2019

When worlds collide

Open science meets Parkinson’s

For years I work in scientific institutions on products / services / change processes that have open science in mind. Then I get Parkinson’s and suddenly see the world of open science with different eyes. You can find my observations in this blog.

11th of April 2019

Benjamin’s Quest

Pushing forward to connect the dots of Parkinson’s

Benjamin Stecher has had Parkinson’s since he was 29 and is committed to bridging the gap between science and patient. A number of his sharp observations are reviewed in this blog.

2nd of April 2019

To freeze or not to freeze

Strategies to circumvent freezing

In this blog I visualize a scientific article by Dr. Jorik Nonnekes and I draw the unique detours that Parkinson’s patients use to bypass their freezing episode.

27th of February 2019

Diet as medicine

Een Parkinsonian gastro-intestinal tract: Part 2

Many Parkinson’s patients have been plagued for years before the official diagnosis by gastrointestinal problems such as pain and constipation. I interview Prof. Dr. Aletta Kraneveld who is particularly interested in the role of the inhabitants of our intestines on our immune system and the health of our brain.

15th of January 2019

Decarboxylase inhibitors

Parkinson’s patients receive decarboxylase inhibitors with their medication. Why?

15th of December 2018

In the meantime, in a parallel universe

Musings after diagnosis.

13th of December 2018

The smell of Parkinson’s

Joy Milne can smell Parkinson’s disease. Scientists took her seriously and there is now a molecular profile for Parkinson’s smell.

29th of November 2018

A Parkinsonian gastro-intestinal track: Part 1

My guts have been hurting for years before I get the diagnosis of Parkinson’s disease. Stinging pains, abdominal distension. After my diagnosis I start looking for the relationship with Parkinson’s.

11th of November 2018

Parkinson bingo

In my attempts to explain why I have Parkinson’s, I often use the metaphor of a bingo card. I see this image confirmed in a scientific article in which triggers, helpers and aggravators are all needed to get Parkinson’s disease.

20th of October 2018

Parkinson’s predictors

You don’t have Parkinson’s disease all of a sudden. The clues have been piling up for quite some time before the neurologist gets involved.

20th of October 2018

Parkinson’s A, B, C at diagnosis

Words I would liked to have known before I entered the neurologist’s treatment room.

6th of September 2018


Me. On strings of dopamine.

1st of September 2018

The diagnosis

A description of my diagnosis.