Designing a new way to cope

MY HEALTH EXPERIENCE: When an artist develops Parkinson’s disease, he has to find a new way to express himself within his new…

MY HEALTH EXPERIENCE:When an artist develops Parkinson's disease, he has to find a new way to express himself within his new limits. This is 80-year-old Jan de Fouw's story, as told to SYLVIA THOMPSON

I’VE BEEN an artist all my life. My wife, Hansi, and I moved to Ireland from Holland in 1951 and we have lived here ever since.

I worked mainly as a graphic designer/printmaker. I lectured in visual communications at the National College of Art and Design and other art colleges in Dublin. I was the art director for Ireland of the Welcomestourism magazine on a freelance basis for 44 years. During all this time, I worked principally from our home, which we built in 1966 in the Dublin Mountains.

It was only when I retired seven or eight years ago that the symptoms of Parkinson’s disease appeared. In fact, I was in the Blackrock Clinic having a hip replacement when one of the doctors noticed that I was developing a shake in my hand and said it was something I should get checked out.

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It was quite a blow to me at the time because I knew nothing about Parkinson’s disease.

I made an appointment with my GP, Dr John Hastings, who referred me to the neurologist, Dr Raymond Murphy, at the Charlemont Clinic. He confirmed that I did have the neurological disorder, gave me information about the condition and put me on low dose of a drug to promote the uptake of Dopamine (the brain neurotransmitter whose absence results in the trembling limbs and slow movements) and another one to counteract the stiffness in my muscles and joints.

Until recently, I was on the same dose of these drugs since I began eight years ago. Then my medication was revised and strengthened.

The biggest loss to me personally is my increasing inability to draw because it is my drawing and writing hand that is affected most by the disorder. Not being able to draw a straight line is not funny when you are an artist. I had to let go of my calligraphy and illustration. Working on copperplate also became impossible. I also had to let go of the precise movements that were required to design book covers. And although I had retired, I was still called on to do such work.

Slowly, I had to change. I had to find new ways of expressing my creativity. I started to open up and give more scope to free art work. My son, Remco, who is a sculptor, suggested I do three-dimensional work. He noticed that some of my sketches had a three-dimensional quality. This prompted me to turn to sculpture.

A new door opened. I began making models in wax and clay which were then cast in bronze. I entered my first piece in the RHA annual exhibition four years ago and it sold. I entered another piece the following year and it sold, too. This was encouragement for any fool.

I knew practically nothing about three-dimensional work, but I had to find out with my own hands what I could do. I designed a piece of work – which I went on to call Parkinson or Parky for short – to focus on my constant companion, pictured right. I wrote a caption for this piece which has come to symbolise what Parkinson’s disease means to me. Here is an excerpt from that caption:

“. . . unknown substance which makes life uncomfortable in many ways and does not go away.

Fumble with buttons, stumble at times, thumb stopping halfway with tea spilling, spoon rattling and feet losing straight lines.

Shaking spaghetti heaped on a spoon is an embarrassing show of being out of tune. Half-an-hour it takes to get quickly dressed and a walk from A to B makes me depressed.

How was it before Parky took hold of me, what is it or who is he?

I decided to give it a face. Imbalance.

Put facts of life in its proper place where nothing works normal.

Horizontal and vertical are ‘off’, the circle crooked, stiff and formal.

The focal centre, black and ignorantly shaped like a mouth.

There is no sound. Imbalance – time seems to slow down.

I am the sorcerer’s apprentice. Listening to the Parky presence.

Waiting, Slowly understanding. Doing as I will – in my own time. Depending on the pill.

Making this particular piece of sculpture has, for me, been a token of recognition of the condition. If you give something a name, it can exist in a more positive way. It allows you to handle it in a lighter and better way. There is no why for Parkinson’s and no cure – as yet.

I realise now that walking for pleasure is no longer walking for pleasure. I must move more slowly and, if I feel dizzy, I must hold on to something and wait for the dizziness to pass.

Another symptom of Parkinson’s for me has been the deterioration of my handwriting. I also notice that when I concentrate hard on writing, my right leg shakes instead of my right hand.

In response to both these things, a few years ago, I set myself the task of writing every day. I took the first two lines of poems written by well-known Irish poets. I wrote them down and then I wrote about eight more lines from my own imagination as if to follow the line of creation – a kickstart, if you will. I did this every day for a year.

My writing has become worse since then, but I believe this discipline may have slowed the deterioration process. And it gave me a great sense of purpose. Nowadays, I just write when I feel like it.

Otherwise, I do what I’m told regarding my condition. I do my physiotherapy exercises every morning. I take my tablets three times a day and I swim once a week. I have also had the benefit of excellent hydrotherapy sessions in Tallaght Hospital.

My wife and I eat a vegetarian diet principally and she looks after me very well. We do everything together.

Since I’ve had Parkinson’s disease, I have met some other people whose condition has deteriorated more quickly than mine. The doctors have told me that by the time my condition gets very bad, I’ll have died from something else. My mother, who lived to 103, always said to me, “Have a very good reason to get up in the morning” . . . and the rest will happen by itself.

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