Parkinson's Disease: Jaroslav's Story continued

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Jaroslav's Story

Jaroslav Kopic, a translator from the Czech Republic, is wheelchair bound with Parkinson’s Disease. Here he describes how his wife and family provide invaluable care and support to enable him to cope with daily living.

“I am married and I have three daughters aged 52, 48 and 46. Since the beginning of my PD my wife has been my main carer. But there have been problems.

At the beginning of 2002 she broke her leg and though it healed, she cannot go for long walks. At the end of that year she was diagnosed with breast cancer. She was operated on and received radiation treatment. So my daughters had to take over.

My eldest daughter lives in Prague. She works in a laboratory of the Institute of Molecular Genetics. She drives a car, so she can often come to our house. She and her husband have two daughters, aged 32 and 29. In 1998 I invited the elder grand daughter to move to our house. She and her husband adapted the attic of my house and made it into a comfortable flat. They have two sons. The second one was born in our house. Both my grand daughter and her husband drive a car, so they can transport me to any medical treatments I need. Her husband is very skilful. He made many adaptations in our flat for moving me about.

My middle daughter lived in our town until last year but now she lives with a friend in Prague. She does not drive a car, so she could not help me a lot but she often went with me for a walk when she lived in our town.

My youngest daughter lives in Liberec; it is the town with our regional authority. She is a tailor and works at home. She is independent so she can often visit though she cannot drive. She is married and her husband and 26-year-old son can both drive so they can bring her to our house. And when they cannot, she comes by bus.

When my wife was ill, the role of caring for me was divided between my eldest and youngest daughters and my grand daughter who lives with us. They cooked for me and when my wife had to go for the operation and radiation, she lived in Prague with my eldest daughter and our youngest daughter took care of me.

In 2002 my symptoms were not so bad. I was able to dress and wash myself, so caring for me was not so hard. In 2003 everything was getting worse step by step; it was my wife who helped me to manage those difficulties. She did not always do in such a way as I expected and when I suggested she should do things differently she cried and said that she did not do anything well.

I sometimes told her everything would get worse. I was trying to tell her that it was necessary to count on an impairment of my symptoms. It was my daughters who told me not to say such things. They corrected my behaviour towards my wife and I had to admit that they were right and I tried to respect that.

There was another way my daughters helped my wife to manage the role of caring for me. There is a week each summer when the families of my eldest daughter and her husband spend their holiday in a recreation site in the mountains. In 2004 I was not able to take part in it anymore. My daughters decided my wife had to take part, in order to have a break from caring for me. They decided my younger daughter should spend this week with her friend in our house to look after me. Next time, same thing will be organised. My wife will spend this week in Prague with my eldest daughter and my youngest daughter will look after me.”

- Jaroslav, Czech Republic, January 2005

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