Irene

Holland

I was diagnosed in the Spring of 1997. At that time I had just moved into another village because I was fed up with the daily train trip to my work. I worked as a social worker in the dermatology department of the Leiden University Hospital. My first PD symptoms were problems with writing. I had no real tremor but my right hand didn't react to the commands I gave.

Looking back, I realize that there were more problems. Friends noticed that something had changed. I was much slower and I had problems with counting and doing several things at the same time. And when I looked at my hand, it felt like it wasn't mine.

I went to the GP and later to the neurologist and within a few months I was diagnosed as a PD patient. I had just moved into my new house in a new place and I felt like a stranger to myself. I stood under the shower in my new house and was faced with the reality that from now on I was a woman who had a certain "defect." In the beginning, it made me buy lots of clothes. I wanted to test if I was still attractive. I learned that "I was and am."

The house where I live is part of a community of 15 houses around a big garden. The people who live there take care of each other, and share fun and social activities. This house has nothing to do with illness. It is a community of families and persons living on their own. The youngest is 15 years old now and the eldest 84. I help some people with the PC and with pictures or making special cards. And, happily, there is always someone who can give me a hand. I suppose that makes me the most spoiled PD patient. I am very happy that I live there. Photography, especially taking pictures of people, is my great hobby. It has a tremendous effect on my tremor. It gives me the opportunity to come into contact with lots of people.

After a few years of PD, I stopped working.  I didn't want to, but the work became too difficult for me and too demanding.  I believe that as a social worker, you are your own instrument (the things needed to do the job are all within you) and as that fails you’ll encounter problems. It was strange to find myself on the other side of the line.   I wasn’t an employee of the hospital anymore.  Instead, I was a patient.
But looking back, stopping work was the best thing I could do--keeping my energy for things I want to do. I stopped work in 2000 with a big retirement party with lots of co-workers. I invited good friends and family too. I wanted them to know more about me as a social worker. There is now still contact with a few of my colleagues and also with the photographer where I worked.
In the same year that I retired, I met Frans at a special PD physical therapy group. He had PD too. We fell in love and we did lots of technical jobs together. Frans moved into an apartment 500 meters from my house. At that time I had more PD problems than Frans. But in the last three years, his PD developed very fast. November this year, Frans moved into a special care home for elderly people. His hallucination problems, dystonia and PD were too heavy for us to live together each day.

My father is the most important man in my life. He is an English-Dutch translator. He taught me the love for language and playing with it. He enjoys pictures very much. He is now 87.

When I was diagnosed in 1997, I was (and I still am) healthy--only a bit PD. Now I am a patient of the same hospital where I worked before as a social worker.  That was a very interesting place to work and I was always interested in the way people cope with their illness.  I learned that people are often stronger than they think and so am I-- a strong Dutch lady! Although I no longer have a job as a social worker, there are quite often people sitting around my kitchen table, talking about their life and problems.

Why do people get ill? Lots of patients ask themselves this question. I knew that there is no answer and I have never asked myself this question. My question was, "OK, now I have PD. How can I cope with it?"  

I have always been very open about my PD.  As a social worker, I had fun with my patients although we spoke often about sad things.  That hasn’t changed; I have still fun. Nowadays, I live my life with PD. I feel that I am strong, maybe stronger than before.