12th of March 2020

A prescription for action

I am no longer an absolute newcomer to the land of all things Parkinson’s and of course I’m quite aware of that. It’s frustrating to notice that trying my best – my usual strategy in life to overcome problems – doesn’t help me stop the inevitable progress of this neurodegenerative disease. Thirty minutes on the spinning bike three times a week, 75 minutes of power yoga twice a week, keeping up with the scientific literature, participating in scientific studies, reporting about the relationship between pesticides and Parkinson’s, promoting open science in Parkinson’s research, applying for a grant to visualize cognitive detours in Parkinson’s, participating in sessions to improve Parkinson’s care … these are all things I do to contribute my bit to ending parkinson’s and to keep the focus on ‘me controlling my disease’ and not the other way around. But no matter how hard I follow-up on my own “prescriptions for action,” the disease progress won’t halt. Some cellular processes beyond my control are pulling my strings. It’s ‘closed science’ to me.

Ending Parkinson’s Disease

It will come as no surprise that the call to end Parkinson’s Disease together hasn’t arrived a minute too soon for me and many others with Parkinson’s. In the book “Ending Parkinson’s Disease” – to be published on March 17 – the authors argue that we must form a PACT (Prevent, Advocate for, Care, Treat) to end Parkinson’s. The book is accompanied by ‘prescriptions for action’ in areas such as:

• Creating a healthier living environment, free of pesticides and toxins which are associated with an increased risk of contracting Parkinson’s
• Living healthier (lifestyle medicine)
• Making the necessary interdisciplinary care accessible to a larger group of people
• Investing heavily in scientific research into new treatments to slow down and eventually cure the syndrome

Worldwide, Parkinson’s is the fastest growing neurological disease (or diseases, as in a collection of subtypes with shared symptoms). The most effective symptom relief – levodopa – is over 50 years old and does not address the underlying progression. There is far too little attention for the worldwide growth of this complex, insidious and debilitating syndrome that leaves no fiber in body and brain untouched. Working together to meet the challenge will prove to be essential.

De parkinson pandemie

On the 9th of June, a Dutch version of the Ending Parkinson’s Disease book will also appear. It bears the title ‘De parkinson pandemie. Een recept voor actie‘.

Prof. dr. Bastiaan Bloem, one of the four authors, medical director of ParkinsonNet (a national network of Parkinson’s paramedics) and professor at Radboud University in Nijmegen where I receive my care, asked me to design the cover for him.

The book can already be ordered at bol.com or via the publisher. If you are a member of the Dutch Parkinson’s Association – de Parkinson Vereniging – you can order the book with a 20% discount. And if you are not yet a member, you can of course decide to become one! That is also one of the recipes for action.

Sparks

PS Because of the corona pandemic, the book launch has been postponed until the 9th of October 2021