It was important to rediscover the beautiful side of life over time
Deborah, 59 years old
"Over time I found it important to stop asking "Why me?" and rediscover the little beautiful things in life, find a new purpose and to keep readjusting my activities to what I could manage."
I noticed the first signs of Parkinson's when I was 42 years old. I realized that my left arm was no longer swinging like it used to when walking normally. I thought that it was to do with my work. I was considered a slow person in the office, even though I hurried. There was a lot of job insecurity in the company at the time and the pressure was mounting. I thought that if I took a longer holiday my symptoms ought to go away. But during the vacation I still noticed that my arm was staying stiff against my body without me wanting it to.
Everything took a lot longer
After vacation I realized that I was only able to do my tasks at work in slow-motion, while others were doing their work faster. My handwriting got smaller and smaller and increasingly spidery. At home everything took longer as well and I had to get up earlier and earlier to make sure I got to work on time. I took increasingly shorter breaks, but I still couldn't get all of my work done. Outside of work I didn't have time to relax or meet friends either. I looked for a cleaner, but that was only a short-term solution.
At the time I knew hardly anything about Parkinson's. I went to see my GP about my tense back muscles and depression. At a later appointment she said she had an inkling as to what I might have. But she thought it wasn't actually possible because I was too young for that. I guess she didn't know that Parkinson's can also affect younger people.
Shock of the unexpected diagnosis
She referred me to a neurologist who then sent me to an outpatient center for movement disorders. I was convinced that they'd confirm that I didn't have Parkinson's. But the opposite was true, and I felt like it was the end of the world. Was I now one of those incurable people even though I had always tried to lead a healthy life?
After I was diagnosed I read more and more about Parkinson's and was horrified at how many things could be affected. Basically your whole body, except for your intelligence. I thought a lot about that back then and joined a society for dying with dignity. I found out about the various options. Around the same time I joined a support group and found out about psychotherapy treatment options. Somebody told me about a study that was being carried out on "Behavioral therapy interventions for people with Parkinson's." I called them and was included in the study. The therapist was very sensitive and the treatment that was part of the study really helped me at the time, and still helps me now.
Symptoms in the first few years hardly noticeable to others
My fears that people would look at me funny and avoid me were unfounded. In the first few years I did notice the symptoms myself, but they were hardly visible to others. Two friends whose fathers had Parkinson's did distance themselves from me, though. But that was at a time when there was hardly any medication. I could understand them distancing themselves, but it was still hurtful to me. I then made two new, very reliable friendships that are still strong today.
And I also met my current partner after having already been diagnosed with Parkinson's for a couple of years. We've been living together for about ten years now. He doesn't have Parkinson's, but he has other health problems. We can discuss things well and have learned a lot about life together.
Treatment with medication
I was referred to the university hospital to make sure the diagnosis was correct and the medication was right. I had idiopathic (editorial note: no known cause) Parkinson's. At first I took an MAO-B inhibitor and L-Dopa three times a day. Later on I also started taking a dopamine agonist. I noticed that I found it hard to concentrate when I was taking the medication. For example, since I've been taking the medication I've found it difficult to get to the end of a book.
While the effect of the medication was well-balanced throughout the day at first, that changed after about four years. I could feel exactly when it started to take effect and when it started to wear off. That experience, and also discussions in the support group, motivated me to talk to my doctor again about the medication.
Unfortunately I had to change the dopamine agonist after several years because there were concerns that it could be damaging my heart. I was unexpectedly found to have leaking heart valves. After changing to a different medication, I unfortunately put on about seven kilos.
I decided to have surgery
After 15 years of treatment I had gradually reached the maximum medication dose. I was taking L-Dopa every two hours and it was difficult to stick to the required intervals between meals and taking the medication. I was also physically unwell and was getting close to the point where I would need care.
That's when I decided to have deep brain stimulation. I went to a university hospital for the operation. The operation really helped me. Since then I've been able to manage better in everyday life. My doctor and I were able to halve the L-Dopa dose so that it doesn't cause problems anymore. I do still notice that the illness is progressing, but surgery gave me an important boost. That was two years ago and everything is adjusted perfectly now. Unfortunately, I put on more weight after the operation.
What helps besides medication and surgery
Besides treatment with medication and the operation, lots of non-medication based treatments also helped me quite a lot: behavioral therapy, physiotherapy, foot reflexology, homeopathic products... to name just a few. Dancing and Feldenkrais-method exercises were really good for me and helped to loosen my muscles a little.
I led an exercise class for people with Parkinson's for several years. I really enjoyed that and got a lot out of it. Sadly the group drifted apart and my symptoms got worse so I had to give it up.
I've been a member of a special support group for younger people with Parkinson's for many years. I really benefit from those meetings; they give me support and confidence.
I think it's very important to have a sensitive and thorough neurologist. I also think it's important to join a support group that's completely against accepting money from the pharmaceutical industry.
Over time I found it important to stop asking "Why me?" and rediscover the little beautiful things in life, find a new purpose and to keep readjusting my activities to what I could manage. And also not to completely rule out a recovery, because who knows what science will develop in the future.
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.