“Parkinson is not solely a movement disorder. In fact, shaking does not even feature in my top ten list of worst symptoms. Far more profound to my quality of life is the effect of my medication wearing off as it becomes very difficult to form words. I would rather be immobile than unable to communicate any more. When you lose your ability to express the sort of person you are, that’s when it is difficult to retain pride and dignity.”

At the age of 27 I took a year off from work to travel to Indonesia. I was writing a postcard to Australia when my hand cramped and I sensed a slight tremor. After my return I consulted a hospital and was diagnosed with Parkinson’s. It was a horrendous shock. I always thought Parkinson’s to be an old person’s disease.

At first, I didn’t want people to know about it, but one day after a long night partying I took a bus and suddenly started shaking. A lady offered me her seat – she was over 70. That’s when I knew I could not continue in denial. It was here today.  I have had Parkinson’s for 15 years now. I have been stuck in the most ridiculous places. One day, walking in London, I started shaking again. I had to stick to the back of some buildings because I couldn’t walk; I was approached by police officers because they thought I was looking dubious, nervous and a bit guilty. They had to take my name and address, and I was on a police record for a year.

I take L-dopa. It is a marvelous drug, the only decent one. But the longer you take it, the more difficult it gets to achieve the right balance. If the effect wears off, it makes you shake more, it becomes difficult to think straight and form the words to communicate. If you have too much you get extra movement and there is a tendency to slur. It is time for something new without those horrible side effects.