Month: October 2018

Yesterday I was browsing through my blog. It feels unreal to read about what happened a year ago. Around this time last year, I was in the hospital recovering from the final course of chemotherapy.
I remember feeling weak and sick, Thomas’ Halloween ghost dangling on my IV-stand, while I pushed myself to walk around the ward.
How things have changed.
Nowadays, I get up early in the morning from Monday through Thursday to get the kids ready for school, have them eat their breakfast, help brush their teeth, force them to hurry up and wear their shoes, their jacket, and walk with them to school. On Fridays, I get up even earlier to go to the VUmc in Amsterdam, not as a patient, but as a member of a research group that is researching multiple sclerosis.
For each of the last 40 days, I have been closing the activity rings on my Apple watch. Standing for at least 2 minutes per hour for 12 hours every day, moving for 400 calories, and completing 30 minutes of exercise. In practice, that means that I am on our rower each day, except for Mondays and Thursdays on which I am exercising at the physiotherapy.
I have started making informative YouTube videos about the HSCT treatment for MS patients, a complicated and challenging topic. Finding out facts about this treatment, reading scientific literature, talking to experts, compiling understandable information and recording and editing videos. I enjoy the process which has taken up hundreds of hours already.
Next month, on the 18th of November, I will be speaking at the National MS day, organized by the Dutch MS Foundation about this topic.
Last month I erected a foundation called “MS in beeld.” I created this foundation to make unbiased, scientific, and understandable information available to multiple sclerosis patients and others that are interested. As soon as the website of the foundation is online, I will mention it here.
On top of this, I enjoy playing Pokemon Go with the kids in my cargo bike. My avatar is called ‘bakfietspapa’ (meaning ‘cargo bike dad’), and we have become quite a phenomenon in the Pokemon Go community here in Den Bosch. People have started calling out “Hey bakfietspapa!” when they see me biking around.