Let's have a chat

I wrote this post a long time ago and didn't have the courage to publish it. Today is a good day for that, as surely any other would have been. Here we go: In one issue of online magazine Parkinson's Life it was reported that the crew of a Ryanair flight in the UK refused to let a passenger with Parkinson's on board because they thought he was drunk.

This case caused a huge outrage on British social media and I wonder how the public in Germany would have reacted to such a case. In the worst case, it would probably not have been made public and the person concerned would have had to deal with the problem on their own (in the best case there would have been a small newspaper report about it). It is not uncommon for Parkinson's to be confused with alcoholism. At first glance, the symptoms are very similar (except for the missing flag). Then there is whispering, or looks are thrown, but nobody thinks of addressing the person: "What's the matter with you? Do you have Parkinson's?"

We pwp don't bite. We're even said to be the loveliest neuro patients in the universe. Nobody outside of our little world knows that. We are like the hobbits of the Shire: friendly, peaceful and reserved. Actually, in the example, the person with Parkinson's should take the first step: "Hello, I have Parkinson's", or if that's not possible, wear a T-shirt with the text: "Shaken but unmoved", "Attention, the pwp's (= people with Parkinson's) come" or "Ever heard of Parkinson's?"

It's strange how chronic diseases are dealt with in Germany. In the long run, it will be expensive for the cash registers, and those affected prefer to keep to themselves or to themselves. In everyday life, it is swept under the carpet as far as possible, according to the motto: my illness is my private matter. Hi? And what about health? It's probably something to do with everyone. And in order to stay healthy, something has to be set in motion. And that is only possible if there is awareness and support from the public. See for example HIV and AIDS. Without public pressure, we would not be where we are now in the fight against this disease. There are so many positive examples of public engagement for more education, research and funding. OK, unfortunately we can't boast of a Mohammed Ali or Michael J. Fox who have dedicated their lives to educating and researching this disease.

On the other hand, we have around 250.000 to 400.000 people in Germany! That's quite a lot of potential activists, something has to be done. There are already courageous attempts to bring this topic to the public, with galas, fundraisers and other ideas that are great and can still grow. Nevertheless, even today this disease remains shockingly unknown and taboo. I often get whispered, "So how are you doing with that thing you have there?" as if it were about He-Who-Must-Not-Be-Named from Harry Potter. Many people with Parkinson's prefer to stay at home in their apartments because they don't want to be exposed to the eyes of passers-by, which I can understand very well.

But that's why it's important to take the initiative and educate, to explain to people what Parkinson's is, why we shuffle, tremble, fidget, have horns and scowl. There is a lack of education and there is no lobby for those affected, for example the First Lady who is committed to the issue or the well-known actress who is going on a reading tour. Can't Till Schwaiger make a film about it? There is a lack of independent sponsors who finance educational campaigns.

Don't forget, Parkinson's is the second most common neurological disease in Germany - and the trend is rising. And the proportion of people who develop Parkinson's disease at a young age is increasing at an alarming rate. It's no longer Grandpa's daddy who is smiled at because he rattles his coffee cup so sweetly. It is the young woman who is in the middle of her job and wants to live her life as normal. For example. The public is much better informed about dementia and its symptoms, or has an approximate picture of MS.

But Parkinson's? That's a black hole - or a white sheet, depending. Many people associate Parkinson's with tremors or a shuffling gait. Nobody outside of the affected community has heard of the fact that there are many more symptoms that can also be much more restrictive.

In order to get things moving, we need to become pwp more active. It is promising to get involved or to find someone who will get involved on our behalf, so that research is carried out in our interest, so that more is invested in adjunctive therapies and the pharmacologists are watched, a lobby is built to to be able to influence politics, to start campaigns, to organize days of action that are open to the public. Big instead of messy, that would be soooo cool! Phew, that's good to let off steam.

I hope I didn't leave behind a clear cut and unconsciously crush one or the other tender plant. My intention (besides letting off steam) was to set impulses for action. To provide food for thought so that the Parkinson's community can come out of its shell and start making a real difference.

And if you are already building and moving something, then you have my full support. Be sure to keep going! If a potential sponsor is reading this: It is definitely worth making a difference for people with Parkinson's!

And while I'm at it, to the big museums: A special exhibition with the works of art by people with Parkinson's is definitely worth it 

If you have actually accompanied me up to here, to the end of the post: Thank you very, very much for coming along.

May Evers, in August 2022