Professor writes the book on life with Parkinson's

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Jane Harrison.

Ealing Gazette - It is not an uncommon sight to see Prof Ray Paul dancing down the street or even on a British Airways plane. Keen to point out that he is not 'bonkers,' he is quite literally dancing for joy as this is one of the few activities he can control, having diagnosed himself with Parkinson's Disease in December 1999, at the age of 52.

An academic at the London School of Economics and Political Science until taking up his professorship at Brunel University in 1992, he said: "I find music and dancing helpful. If I dance fast enough I can move as if I didn't have Parkinson although I am not elegant. I will dance wherever I am. If people don't like it, it's tough but most people are accepting when they find out why."

He illustrates that acceptance by British Airways staff who allowed him to dance for four hours during a London to Beijing flight, in his book: Living with Parkinson's Disease Shake Rattle and Roll, which took six years to complete.

The book is a study in the sort of black humour he uses to get through a life that plunged him into the depths of suicidal depression when he realised something was drastically wrong at his father's 80th birthday party.

Prof Paul, 62, of Baldwyn Gardens, Acton, said: "As I gave a speech I felt very cold and shaky but knew it was not cold and I wasn't nervous. I got out a medical book and read the symptoms for Parkinson's Disease and there was a list of everything I had: tiredness, difficulty turning, dribbling, stiffness. When I collapsed on holiday and went to the doctor I asked her if she wanted me to tell her what was wrong. When I did she went white. It was confirmed by a consultant.

"I looked up life expectancy in an old medical book, which wasn't great and then a newer one gave me an extra two years, which cheered me up no end. I went into clinical depression. The doctor said what I was going through was bereavement. It was for myself; as if I had died. I went crashing down and felt suicidal. It took me two years to write about that chapter."

The way Prof Paul deals with this cruel twist of fate is both inspiring and bewildering. He saved the news for his wife until the first day of the new millennium, didn't tell his daughter for two years and hid it from his work colleagues until his condition forced him to come clean.

He said:

"My wife collapsed. Now she copes by pretending I am not ill, which is the best thing to do. It's hard sometimes because she expects me to do things I can't do, but it's better than being sympathetic."

His daughter was almost relieved, thinking his 'news' was terminal cancer and reaction from work was mixed, mainly good, some indifference. He said: "I was very secretive because I didn't want to lose my job."

In spite of his illness he has been Visiting Professor to both LSE and Brunel since 2003, advising staff and PhD students and gives seminars at universities. He said: "The benefit is I can turn up or not, because I am not getting paid, but I get good feedback."

He wrote the book because he couldn't find anything on the market that would tell him what "he was in for" and to help carers understand what sufferers were going through.

The book is extraordinary, not only covering every aspect of the disease, but also how to tell people, mental health and a plea for more openness in society, health schemes and benefits and is peppered with humorous vignettes to lighten what could be a very depressing read.

It is also well-written and even encouraging, quite some feat from a man who said: "I bitterly resent being ill; my body has let me down. I would do anything to be normal."

* The book can be bought from Amazon or from Prof Paul's website: www.raypaul.com

Note by John Pepper:

I printed two items in red, because we all need to take note of his action and reaction. He was first in denial and then in mourning. We all need to have gone through a period of mourning so that we can put it all behind us, and then get on with our lives.

His wife needed to do the same thing!