5 years on/off

The Reluctant Adoptee and the Gift of Parkinson

Apr 10, 2026

Hello everyone,

Welcome to this space. Whether you are a long-time supporter or a new subscriber, I appreciate you being here.

Why Substack?

I’ve transitioned my updates here from Voordekunst to keep things streamlined. I know… “another platform”…, but you don’t need to do anything or pay for a subscription to keep reading (unless you want to of course). Substack simply acts as a clean, ad-free inbox for my writing and updates. If you’d rather not be on this list, please use the unsubscribe link at the top or bottom—no hard feelings at all.

Awareness & Milestones

April is Parkinson’s Awareness Month, and this year marks my fifth anniversary since diagnosis. It’s a significant milestone that coincides with World Parkinson’s Day on April 11th. I’ve put together a informative page for those who want to know what PD actually entails:

🔗 Understanding Parkinson’s

(in English as well as Dutch)

In short: it sucks, and the one who invented this ridiculous disease should be quartered. That said, it has given me a perspective on life, seeing things that are otherwise unnoticed. Wonderful things.

Current Activities

Meanwhile I am keeping busy with several creative projects. You can track the progress of my book, listen to my recent music, or dive into my numerous other creative outlets via the links below:

TONIC FOR THE BONES

(eagerly awaiting editing)

📖 More info

Seeking the light — From ‘We Made It to The Light’ (*Tonic for the Bones)*

Parkinson’s Paradise

(an excerpt)

Here I am, awake at 5:30 a.m., lying in bed, focusing on my breathing. Or rather, my wife’s breathing, as she snores like a woodworker beside me. My legs are twitching, muscles spasming as if preparing for action. Should I dance?

I slide out of bed, slowly swaying in the dark, carefully dodging pointy bed corners and scattered laundry on my way to the bathroom.

After an epic journey guided by the dim glow of my phone, I finally touch base at the toilet and release what feels like a liter of dark yellow evidence.

A lump in my throat — likely from sleeping in what feels like a refrigerator — I consider taking a paracetamol. But turning on the bathroom light, which rivals the Creation in brightness and is accompanied by the whirr of a thousand extractor fans, might snap me out of my sleepy haze. So, I do a shot in the dark, fishing out two pills that could very well be Feminax.

On my return journey, I hear my son’s sweet snoring from one side of the landing and my wife wood-logging on the other. Between them, the stairway leads down to the beginning of another day in Parkinson’s Paradise.

🎧 Music Input

The Soundtrack that inspired and complements my book:

🎧 Music Output

Yes, I made this - with a little help from A.I.

I don’t fear A.I., in fact, being ‘disabled’ now, I see this as an excellent extension of my soul - it still matters who is “behind” the buttons, or rather: who is “prompting”. Just like synthesizers were frowned upon in the early days.

🔗 Paradox Prime

(my musical moniker)