Stay active, curious and committed

Photo of man reading in garden (PantherMedia / goodluz) Holger, 49 years old 

"After the diagnosis it was very important for me to know that people close to me were still by my side. That nobody wanted to leave me and that I could keep my job. That gave me a sense of security. That security formed the basis of adjusting to a life with Parkinson's."

The first signs of Parkinson's came in about 2001. I was 35 years old at the time. I can still remember the exact situation: I was in the canteen at work and there was a heated discussion going on at the table. There was a bad atmosphere. Suddenly one of my hands started to shake. The person opposite me looked at me a little strangely, but didn't say anything. I was puzzled and wondered why I was shaking and just put it down to the stressful situation. The shaking then went away.

A couple of years later I had a very tough phase in my life and the shaking came back. It got so bad that at first I thought that I was mentally ill. At lunch I sat so that nobody was opposite me. Even if I was only under a little pressure my hands started to shake. I felt very uncomfortable about it all. But I never would have thought that I might have Parkinson's.

I was diagnosed with dystonia, but not yet with Parkinson's

Some time later I kept getting symptoms in my neck and head area during weight training. My head automatically moved up a little. I went to see a neurologist. The doctor calmed me down and diagnosed me with dystonia (editorial note: a movement disorder with muscle cramps). I was then also given treatment.

But the problems with my head got worse over time. I went to see various doctors, from orthopedic specialists to neurosurgeons. They tried out all sorts of things but nothing helped. Nobody thought it might be Parkinson's.

The diagnosis came as a relief

An acquaintance then sent me to an orthopedic surgeon who examined me very thoroughly and referred me to a neurologist for further clarification. I didn't like the neurologist, but he was very good. He said straight away that he was going to examine me for Parkinson's. I couldn't understand that at all. I was convinced that I didn't have something like that and was skeptical. I let him do the examination, though, and the next day he called me and asked me to come and see him. I guessed then that I had Parkinson's. I was at my wit's end.

I then went to see him with my wife. But I was surprised, both by the doctor and by myself: It was Parkinson's, but he was truly happy about that result! He said that it was good to finally know what was wrong. Because now I could get the proper treatment. That gave me hope. I finally knew what the matter was and that things could be done to treat it.

The side effects were very bad

The doctor started treatment with a very low dose of medication. But even on such a low dose I couldn't sleep. At first I thought that it might not be to do with the medication at all, but as the dose got higher as planned, my trouble sleeping got worse. It got better when I was prescribed sleeping tablets. But then I started feeling anxious. I asked the doctor to change something.

He changed the medication. The new medication was much better at first. Over time I became forgetful and couldn't concentrate well though. And I started having depressive thoughts. That was a really bad time for me. We then agreed I should stop taking the medication and at first I had no medication at all until I was sent to an in-patient rehabilitation center. The rehabilitation really helped me. I was given a new type of medication. I still tolerate it very well and I don't have any side effects. I am also prescribed an antidepressant in a very low dose. It has all worked out very well.

Living with Parkinson's

Over time I’ve learned to live with the illness. It wasn't always easy and it took some time. At times it is still difficult. But in a way I suppose I can count myself lucky.

Not long after my diagnosis I saw a documentary on TV about a husband and wife who both had Parkinson's. It showed how the couple managed their daily lives with the disease. That dispelled a lot of my worries.

I then got in touch with a self-help group and went to a tavern to meet with the group for the first time. I still go now. Talking to other people who are in a similar situation helps me, it gives me strength and courage.

Thanks to that documentary about the couple and the contacts in the self-help group I have seen that it is possible to live a fulfilling life with Parkinson's. That was a relief for me and gave me a brighter outlook.

My family and employer support me and give me security

In all these years my doctors have of course helped me, but my family and my employer have been especially supportive. After the diagnosis it was very important for me to know that people close to me were still by my side. That nobody wanted to leave me and that I could keep my job. That gave me a sense of security and formed the basis of adjusting to a life with Parkinson's.

My employer organized for us to meet with the works' council, the head of department and the HR department and discuss together how I could best be helped. We decided to follow the "Hamburg Model" for returning to work. Once my sick leave was up I slowly started going back, at first for up to four hours a day, and then I continued to work on a part-time basis. Care was taken to make sure my workspace was right, like making sure my office wasn't too far from the toilets because I have difficulty walking. What I particularly appreciate is that my abilities and interests are taken into account when work is being delegated.

Work is an important part of my life. I would never have considered stopping work because of the illness. Quite the opposite actually, I am much more committed than I used to be. And I really enjoy work. We are all the same when we're at our desks. We all do the same job and I enjoy that. And only working half days is liberating because it matches up with the amount of work I can actually do and keeps me from getting worn out.

Stay active, curious and committed

I try to be as open as possible about my illness, even though that is still not always easy. At work for example, I spoke about it a few weeks after the diagnosis. I have changed generally due to the illness. I am more open than I used to be.

I think it's important to still enjoy life and remain curious. Also to dare to do something new, try something out that you've always wanted to do, and not hide away. To make a commitment to others, to a hobby, to work and stay active. It also takes your mind off the illness!

I want to keep mentally fit.  I do a lot of things on the internet. And I also make films. I basically enjoy trying out new things.

Contact with other patients through the self-help group is very important to me. Speaking to others who have the same problem as me puts my situation into perspective. I now have some good relationships with people from the group. I am happy if I get an unexpected call from my "fellow sufferers" who just want to know how I am doing. I (and the others too) usually feel a little better after having a quick chat.

If I am alone and feeling bad I sometimes also write short stories. It helps, it distracts me and I usually feel better afterwards. Going to stay at a monastery also helps me. I don't do anything there, I am just there. I sleep, eat, talk to the people and meditate, which also gives me strength.

Parkinson's is a very unpleasant illness with lots of symptoms. Dealing with the physical and mental symptoms is a new challenge every day. Accepting those challenges can make life richer and more intense. But that requires, unfortunately I must admit, having a good medication program (which becomes more important as the illness progresses) and an understanding, but also demanding social network.

Carpe Diem!

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

Labels: G20, G25, Head and nerves, Parkinson's disease, Shaking palsy