English version: Wytze Russchen - debunks the prejudices about Parkinson's

One of the reasons for writing my first book 'Het Oliemannetje' was to bust the myths and prejudices about lobbying. The image people have of lobbyists is often negative and not in line with reality. If someone asked me at a birthday party what I did for a living, it would be better to say that I just got out of prison than that I was a lobbyist in Brussels. Otherwise I would be bombarded with (misplaced) criticism and my evening would be ruined.

There are also many prejudices and misconceptions about Parkinson's disease (PD). Parkinson's Life* compiled a top 3:

1: 'PD is an old man's disease'. This is false. It is true that PD is more common with men, but women also get the disease. In addition, PD progresses faster for women. It is also true that PD affects the elderly more often, but young(er) people can also get PD. The youngest patient as far as I know - was diagnosed at the age of 12. I, myself was 37, not (yet) an old man either.

In 2nd place: 'PD is a trembling disease'. Also not correct. A tremor is one of the many symptoms of PD. Scientists have identified more than 40 symptoms as a result of PD: from muscle stiffness to sleeping disorders and from depression to constipation. They differ from patient to patient and can change as the disease progresses. I have never suffered from a tremor myself, yet I suffer from plenty other symptoms. 3: 'PD is curable’. I wish it was true! Yes, better medication and treatments emerge that slow down the progress of the disease and ease the symptoms, but to date there is still no 'cure' that can stop PD. Parkinson's  remains incurable and progressive. In fact, the number of patients suffering from PD worldwide is increasing exponentially. That is why more research into this most disabling disease is crucial.

These kinds of prejudices - usually based on a lack of knowledge - stand in the way of a good understanding of what patients endure and how to deal with it. Therefore, more awareness is essential. For care providers, people close to a patient as well as the general public.This can contribute to a faster diagnosis and start of treatment. It can encourage family, friends and colleagues to support people with PD in a more meaningful way. And it can make patients feel less lost and isolated..

Parkinson's Life has started an education campaign #PLMythBusters* to 'bust' the myths about PD. Based on facts, not on prejudices. Living with Parkinson's is hard enough, fake news is the last thing we need. Therefore, I wholeheartedly support this campaign, but I like to do so in my own way, for example by wearing funny t-shirts, images speak louder than words.

 

Wytze Russchen

* Parkinson's Life is an online platform for the international Parkinson's community:

https://parkinsonslife.eu and campaigns against myths / prejudices

https://parkinsonslife.eu/busting-parkinsons-disease-myths-with-our-newinfographic/