15 december 2018

In the meantime, in a parallel universe

March 2018. Ik hear the neurologist say I have Parkinson’s disease. I am still physically in her treatment room, but I notice that I am quietly ‘leaving’, away from here.

I cycle home without noticing my surroundings. When I feel both feet on the ground again, I look around me. It’s as if I have ended up in a parallel universe. When my children come home in the afternoon, I am relieved. They have traveled with me! And my husband also makes his appearance. Pffff .. so far, so good. 


To receive a diagnosis of a chronic neurological illness is the beginning of a long journey into the unknown—a journey that may begin in hope, pass through periods of elation and frustration, and finally end in acceptance and resignation | Baker, M. G., & Graham, L. (2004). The journey: Parkinson’s disease. BMJ (Clinical research ed.)329(7466), 611-4. Retrieved from https://doi.org/10.1136/bmj.329.7466.611


Drawing a new map

December 2018. I have been on the road for three quarters of a year now in the parallel universe called Parkinson. I am fully charting what it looks like here, which trips I can make, which boundaries are there, whether I can or can not overcome them, and how I can take the people I love into new territory.

On this website I hope to regularly give you an update about my expeditions.


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