14th of March 2022
When I met Sara
Or how science just got personal
1st of October 2021
Parkinsonian mice with intestinal inflammation
A DAY IN THE LIFE OF PATIENT RESEARCHERS
18th of August 2021
RESEARCH INTO ALTERING THE MENTAL STATE TO IMPROVE GAIT
AN INTERVIEW WITH ANOUK TOSSERAMS
In this post I interview Anouk Tosserams. She is conducting PhD research into the detours that people with Parkinson’s use to improve or circumvent their walking problems. She was recently awarded a KNAW van Leersum prize. With the accompanying grant, she will be leaving in May 2022 for the Brain and Mind Centre in Sydney, Australia. There she will zoom in on one of the compensation strategies that is still underexposed: Altering the mental state.
7th of October 2020
PARKINSON’S IN YOUR HEYDAY
CO-CREATING CARE FOR PWP IN THE PRIME OF THEIR LIVES
This blogpost highlights a project at Radboudumc where healthcare providers and patients (experts by experience) work together to better answer the specific questions of young people with a Parkinson’s diagnosis. They work from the impact Parkinson’s disease has on various areas of the life of a young patient and important people around him or her.
2nd of October 2020
RANKING THE TRIALS
A CONVERSATION WITH NEUROLOGIST BART POST ABOUT HOPE IN TIMES OF PARKINSON’S
In this blog post, I interview my neurologist, Dr. Bart Post, about his view of the Parkinson’s disease drug pipeline that I covered in a previous blog. Under my arm, I have the book Brain Fables, written by Prof. Dr. Alberto Espay and Parkyvist Benjamin Stecher. I also have a few questions about this book that I would like to ask Bart.
2nd of October 2020
BAKERY DISEASE AND THE FALLEN TREE PARADOX
10th of August 2020
PARKYVIST IN THE PICTURE
BUILDING UPON KEVIN MCFARTHING’S HOPE LIST
26th of June 2020
RESEARCH INTO FINDING DETOURS FOR COGNITIVE OBSTACLES, PART I: GRANT FUNDED, APPLICATION SHARED
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
TODAY IS NOT THAT DAY: STRUGGLES IN #OPENSCIENCE ADVOCACY
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
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
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
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
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
A description of my diagnosis.