Personal views: Life after Parkinson's
Authors: David Jones
Journal: BMJ (2002)

I remember 24 July 1982. The doctor had completed my annual medical and I was waiting for the verbal abuse that only doctors are permitted to deliver, such as “You should lose some weight” or “Ever thought of giving up smoking?”

Surprisingly he asked me in a kind and concerned voice if I had any other problems. I mentioned that I had some stiffness in my right hand that was making my writing a bit squiggly, which was a little irritating. I joked that it was interfering with my ability to grip a golf club.

I had first noticed it in the pub on Christmas Eve. Someone offered me a crisp and I had difficulty picking it up—my fingers just did not move. Over the months, it had got worse but I was working hard sorting out the problems at Grattan, the “ailing” mail order company that I had joined earlier as chief executive.

The doctor took off my glasses and tapped my forehead above my nose. “You've got Parkinson's disease,” he said in a matter of fact tone.

I was stunned. Parkinson's was an old people's complaint, and I was 38. And how could he diagnose something that serious by such an amateurish test? But a visit to the consultant the next day regrettably confirmed that I did have Parkinson's.

This just could not happen to me! I was a workaholic, I had a career, a share price to worry about, a family to support—a wife, three children, a dad, and a yellow Labrador, Jodie. I decided to ignore it, not because I hoped it would go away like a bad dream, but because I could not allow it to interfere with my life. Apart from my wife, Ann, and my secretary, June, I did not tell anyone. If anyone spotted me taking the tablets, I would explain that I had arthritis.

Throughout my career as chief executive of Grattan and then of NEXT I kept my illness secret. At first, it was not difficult. I was one of the lucky ones whose disease deteriorated slowly, and for about 10 years I felt comfortable. In the early 1990s, however, my condition worsened, and I began to experience the dreaded “on” and “off” periods. Every day, I had to wait for my body to start functioning in the morning, then alternating between normal periods and frustration. I learnt to take advantage of the “on” periods and be patient when I was “off.” It became an art to time the medication so that I was “on” at the time of a crucial meeting.

One morning when we were to announce the NEXT annual profits, my body just would not function. I could not shave or shower properly. I took 30 minutes to put on my shirt and do up the buttons and gave up on the tie and shoelaces.

In desperation, I rang one of my closest friends who helped me to dress. I kept swallowing more tablets so that I could get to the meeting. But when I got up to talk the overdrugging took its revenge. I could not stop shaking, my voice was not mine, and I was panicking.

Rumours were rife the next day—the analysts and journalists were saying that I was unwell. I could not admit that I had Parkinson's disease and fortunately no one asked me if I had it. I blamed the shaking on a new drug that I was taking. I got away with it and the rumours stopped, but I knew time was running out. 

People who have Parkinson's disease are always aware that they have it—it never leaves you. Planning your “on” time to coincide with an important event—like my daughter's wedding—can be a nightmare. My secretary had to cancel meetings at short notice using an ever increasing list of excuses.

Early in 2001, I decided to announce that I had Parkinson's disease—the timing was right. I had successfully transferred the chief executive's crown to my chosen successor, and there was no longer a need to hide behind the arthritis story. An interview with Kate Rankin of the Daily Telegraph revealed all. I felt a great sense of relief, which in itself made me feel much better. The relief I have now that I have gone public is enormous. I even feel so much better. And if I am in an “off” period at the wrong time so what?

I am looking forward to the next phase of my life. Apart from continuing a varied business career I intend to try to help people with Parkinson's disease who are far less fortunate than I am. I want to tell people that having Parkinson's disease does not necessarily mean that you cannot have a reasonably normal and exciting life—I certainly have.