"Everyone has their own Parkinson's"

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Three people. Three stories. Three faces of a disease: Parkinson's. In the Schwabinger Schönklinik on the occasion of World Parkinson's Day on April 11th, three “activists” set up an information stand for the Munich Parkinson's Self-Help Center. A conversation about a multi-faceted disease

houseofgoldhealthproducts: Ms. Huser, Mr. Maier, Mr. Schumann: All three of you have Parkinson's disease. How did you know that something was wrong?

Maria Huser: I thought I had tendinitis, and the pain came from the tremor. But the doctor immediately had the right nose and sent me to the specialist.

Gerhard Schumann: We were lucky, that was pretty easy for you! With us younger patients in particular, doctors often come up with the idea late on that Parkinson's might be behind the symptoms. That can take years.

houseofgoldhealthproducts: Mr. Schumann, you received your diagnosis eight years ago. How was that with you?

Schumann: My wife was the first to notice it. She saw that I no longer swing my right arm when I walk. This is a typical early sign.

houseofgoldhealthproducts: And that's when she came up with the idea that it could be Parkinson's?

Schumann: She happened to read an old interview with Michael J. Fox ...

houseofgoldhealthproducts: ... a Hollywood actor who also developed Parkinson's at a young age.

Schumann: Exactly. “Back to the future”, that was it.In any case, he talked about his illness, and my wife thought: "That's Gerhard speaking."

houseofgoldhealthproducts: Mr. Maier, like most of you, the disease broke out later. The diagnosis was only confirmed at the age of 64. That was ten years ago. How have you been?

Bernd Maier: When the tremors started, I knew straight away what was going to happen. My father also had Parkinson's disease. Then you also know how it will probably end: with pneumonia. Such an infection often occurs in the late stages of Parkinson's disease - and is then often fatal.

houseofgoldhealthproducts: Because swallowing no longer works properly?

Maier: Exactly. Once too often you get particles of food into your lungs, and that's it.

houseofgoldhealthproducts: Mr. Schuman - what did the diagnosis do to you?

Schumann: I immediately had pictures in my head. You see the former Pope trembling to himself on the balcony of St. Peter's Basilica. Muhammad Ali in a spiral. And Otti Fischer, with his botox face. Parkinson's can also freeze facial expressions.

houseofgoldhealthproducts: Did you fear that you too would soon reach such a point?

Schumann: Of course. But it doesn't have to be! For some, the disease progresses in fast motion, others are still quite fit after 20 years.

houseofgoldhealthproducts: Ms. Huser, how did you deal with the diagnosis?

Huser: I didn't tell anyone at first. For two years. You don't want to admit it yourself. That's why you don't tell anyone else.

Schumann: It was different for me. I immediately came out. And I was very lucky: my boss immediately offered me support. I worked as a sales manager in a large car dealership. If something got too much for me, I could say it openly. But that is not said to be going so smoothly. Employers know that you are not as resilient as others. Many are bullied out.

houseofgoldhealthproducts: How did you fare, Ms. Huser?

Huser: It went well for me too. I am now partially retired. However, I no longer work in my previous role as housekeeping manager in a clinic. It was just too stressful, it made the symptoms worse.

houseofgoldhealthproducts: Mr. Maier, your hands are shaking, you can see that, but you Ms. Huser and Mr. Schumann - the way you sit here, you look completely healthy.

Huser: Yes, the drugs work too! Sometimes I even forget that I'm sick.

Schumann: But if you then also forget the pills, you'll quickly notice what's going on!

Huser: Yes, of course, then the waving starts again!

Schumann: It often happens to me that someone says to me: “You don't have Parkinson's at all, you don't even shiver and you can still do everything!” But of course nobody sees the gray moments. When I shuffle my feet through the kitchen in the morning because the pills aren't working yet. It's like a steam engine that first needs pressure on the boiler to get going. And sometimes the drugs don't work that well either.

houseofgoldhealthproducts: For example?

Huser: When I have to go through a bottleneck, a door for example, something happens in my head. My feet often freeze to the ground, so to speak. This is called "freezing".

Maier: I always say: the head goes first, but the knuckle stays bap! Especially at night, when you have to go to the toilet and the tablets have worn off. You have to concentrate very much so that it works and you don't fall.

houseofgoldhealthproducts: How does the environment react if you behave conspicuously?

Maier: It's especially bad when I fall outside. You can't get up there, then I'll lie like a frog on the street. People then come and ask: "Opaches, did you drink too much?"

Schumann: At the beginning, people also asked my wife if I had started drinking. I often walked to work in such a shaky way in the mornings.

Huser: I think it is more difficult for men. With us women, you don't think so easily that we are drunk.

houseofgoldhealthproducts: When do you suffer from the reactions?

Huser: I find it particularly bad at the checkout in the supermarket. Sometimes I have trouble getting the money out of my wallet.

Schumann: Fine motor skills are a big problem in Parkinson's!

Huser: If there is a line behind me, then I get nervous and then it gets even worse.

Schumann: I know that too. When everyone is in a hurry and you are not making good progress yourself and stopping traffic - there are often biting comments hailing.

houseofgoldhealthproducts: Parkinson's seems to be a disease that doesn't really fit into our times, where everything always has to run efficiently, quickly and smoothly. To a certain extent, you hold up the mirror to society with your illness.

Schumann: Exactly! We slow down society!

houseofgoldhealthproducts: How do you react when people look at you crookedly?

Schumann: When you have a handicap, you feel the looks much more strongly. I then react differently, depending on my daily form. One day I squat on my trembling hand so as not to attract any further attention. I am offensive to the others and say: "I am not secretly waving to you, I have Parkinson's."

houseofgoldhealthproducts: Does humor help?

Schumann: Absolutely! There is a lot of laughter at our regulars' table. We are not trembling mourning lumps. The first time I showed up, I thought I was wrong because it was so fun. Of course you're down too sometimes. But then the others build you up again. The self-help group is extremely important for us “Parkis”.

houseofgoldhealthproducts: What do you think of that, Mr. Maier?

Maier: The self-help groups can be very supportive, that's true. But I still feel painfully that one loses so much through illness. Skiing or catamaran sailing, for example - that meant a lot to me in the past, but now I can no longer do it. The worst thing is when you feel yourself losing your language. You then lose your identity. One withdraws. Age plus Parkinson's is a diabolical combination.

Schumann: That's true, of course. It's not that far for me yet - and maybe it never will. At the moment I can say that the illness has also changed my life for the better. I now write books, do photo exhibitions. I know many who, like me, only discovered their creativity through illness.

Huser: Even if we support each other, everyone has to find their own way to live with the disease.

Schumann: That is correct. Everyone has their own Parkinson's.

Bernd Maier, 74, was diagnosed with Parkinson's ten years ago. He heads the Munich regional group of the German Parkinson League until May 1, 2016 (www.dpvmuenchen.de).

Maria Huser, 59, worked as a housekeeping manager in a clinic until the outbreak of the disease 13 years ago. Today she is partially retired and has given up her management function. Together with another person affected, she looks after the Munich meeting point for younger Parkis (www.parkinsonstammtischmuenchen.de).

Gerhard Schumann, 49, received his diagnosis eight years ago. He still works part-time in the car trade and freelance as an author and photo artist (www.bildermann11.de). His first book, "Parkinson's - Living with Pitch Disease" deals with his personal experiences with the disease. In the meantime he has published other works. His picture exhibition "Parki and I" was shown at the invitation of the then Federal Minister of Health Daniel Bahr in the Ministry of Health in Berlin.

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