HOW WE MET

RAY KENNEDY AND DR ANDREW LEES
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The Independent Culture
Ray Kennedy, 43, played football for Arsenal, Liverpool and England (for whom he won 17 caps) before he was diagnosed as having Parkinson's Disease in 1986. With Dr Andrew Lees, he wrote an acclaimed book, Ray of Hope, about his illness. He livesin Tyne and Wear with his partner, Audrey, and their daughter. Dr Andrew Lees, 47, MD, FRCP, is Consultant Neurologist to the National Hospital for Neurology and Neurosurgery and the Middlesex Hospital. He is also Medical Adviser to the Parkinson's Disease Society. Married with two children, he has been a lifelong supporter of Liverpool FC.

Ray Kennedy, 43, played football for Arsenal, Liverpool and England (for whom he won 17 caps) before he was diagnosed as having Parkinson's Disease in 1986. With Dr Andrew Lees, he wrote an acclaimed book, Ray of Hope, about his illness. He lives in Tyneand Wear with his partner, Audrey, and their daughter.

Dr Andrew Lees, 47, MD, FRCP, is Consultant Neurologist to the National Hospital for Neurology and Neurosurgery and the Middlesex Hospital.

He is also Medical Adviser to the Parkinson's Disease Society. Married with two children, he has been a lifelong supporter of Liverpool FC.

RAY KENNEDY: After he read the story about my illness in the papers, in 1986, Dr Lees wrote to me, but I had so many letters from so many people that I didn't do anything about it. He wanted to know more about the symptoms I'd had years before my Parkinson's was diagnosed, but I couldn't face going to London. I'd done my travels, and I had a good doctor in Newcastle, but I didn't throw the letter away. I put it in a file.

I didn't meet Dr Lees until four years later. I'd joined the Parkinson's Disease Society, and whenever they sent me newsletters, I noticed his name on the letterheads. Gradually, I'd reached the stage where I was feeling so bad that I was desperate. My specialist didn't seem to be able to do anything more for me, so I dug out the letter and asked Audrey, my partner, to phone him for me. Dr Lees told her: "Bring him down to London.''

I thought he was a nice man, very professional. I said that just because I'd been a famous footballer, I didn't want any special treatment. Doctor Lees sorted me out. I had a lot of problems - emotional and medical - but he calmed me down. I could talk to him. I thought, he's good, this fellow. He's not at all snobby, and he doesn't stand on ceremony.

Our friendship developed naturally. He called me Ray, but I couldn't call him Andrew. No way. My children have never understood why I find it so difficult. They've always called him Andrew but I respect him too much to call him anything but "Doctor''.

He's very well thought of on the ward. All the nurses think he's fantastic.

Although he's a shy man, he has a lot of time for his patients. He comes to see us morning and night. On Saturdays and Sundays, hospitals can be very lonely places. Dr Lees knows this, and sometimes he's taken me out for a meal. His wife came with us once, and another time, when the kids were visiting, he took us all to the Mayfair Hotel in London. He works incredibly hard, but I've never seen him stressed. His wife told me that once he's home, he never talks about what happened at work.

I thought it would be so much easier if I could put the football and the illness in a book. I knew Dr Lees could write it better than me, so I asked him: "Would you write it for us?'' He said he'd think about it. The next morning, he told me he'd do it -"But only if you really want to tell the truth. As long as you're absolutely honest about everything.''

While he was doing the research, he got to know my parents, my ex-wife, my children and most of my friends. He stayed with me for two days, when it was my turn to look after him. I made him toast and coffee in the morning. We went 10-pin bowling with thekids, but my foot seized up and I went rigid, so Dr Lees and another fellow had to carry me out.

All the time he's been treating me, he's worked with my specialist at home, monitoring the drugs. Once, when I was desperate, I phoned him at home at midnight. I didn't want to do it, but I was feeling so poorly, and it helped just to know he was at the end of the phone. The drugs affect my moods, but he always sorts me out, and now I've learnt how to inject myself in an emergency. There was one time when I was going to Highbury with Dr Lees and his family, and I started reacting badly to the medication. He just told me to go into somebody's garden and give myself an injection - no fuss. After that I was fine. The directors at Arsenal had arranged for all of us to be in a private box and we had a great time.

It sounds like a strange relationship for a doctor and patient, but it's always been very professional. I think the work he does is absolutely fantastic. Dr Lees explains everything to me. He's taken me to his Brain Bank, where there are Tupperware containers and ice-cream boxes full of diseased brains from all over the world. It's an eerie place. He's shown me cells under a microscope. He's even got a rubber brain, which fell apart when I got hold of it. I couldn't put it back together again.

Dr Lees knows everything there is to know about me. I trust him with my life. There are a lot of good doctors, but I think that away from London, they don't all have access to the drugs or the ability to treat patients in the way that he does. I met a man from Belfast who has Parkinson's Disease, and when we started discussing treatment, I said: "Have you tried this? Have you done that?'' He didn't know what I was talking about. It's a good job I kept that letter from Dr Lees.

ANDREW LEES: As a lifelong Liverpool supporter, I felt as though I knew Ray Kennedy in the Seventies, but it wasn't until 1990 that the face of a football hero, filed away among fond Anfield memorabilia, became that of my patient. As a young doctor working in London, football was something of a clandestine activity for me. In those days, most of the medical profession were only interested in rugby. Going to a rugby match was perfectly acceptable, but spending Saturday afternoons at Arsenal wasn't something I could share with colleagues on Monday morning. Football is now so popular it's almost sexy to be a fanatic.

As Medical Adviser to the Parkinson's Disease Society, I was sent all the newspaper cuttings about Ray Kennedy when the story broke that he had the disease. Most of the stories seemed to suggest that the illness may have begun many years before it was diagnosed. This was particularly interesting in my field of research. I wanted to know more about the symptoms and the time frame, so I wrote to Ray, asking if he would get in touch, but he didn't reply.

Four years later, I had a call from Audrey, Ray's girlfriend, asking if I would see him. Even with his poor posture and forward slouch, as soon as he walked into the consulting room he was obviously a fine figure of a man, broad-chested and handsome. Despite periods when he became quite disabled, the nurses always remarked that Ray Kennedy had no difficulty in attracting women.

Soon after our first meeting, Ray drew a parallel between himself and John Merrick, the Elephant Man. It was an indication of how desperate he felt. Like Merrick, Ray Kennedy has become a famous patient, known to all travellers on the London Underground because of his face on the posters promoting the Parkinson's Disease Society. Like Treves, Merrick's doctor, I've become engrossed in my patient's case, but I'm aware of the dangers of our becoming a double act. Our relationship has always been a professional one, but Ray has become a friend as well as a patient. Football added an extra dimension to our friendship, but from the start, Ray found it much easier to talk about his illness than football. When we started writing the book together, I had to tease the football out of him.

He's a very straightforward, likeable man, who hasn't lost his sense of humour despite all that has happened to him. Ray's always had a positive, optimistic attitude to his illness.

He's intelligent and perceptive and has many interests - music, wine and cooking. He's very courageous. Parkinson's can be frightening and unpredictable. It compromises the quality of someone's life. It's life in the slow lane - as if the starter motor and gear lever of a car have gone skew-whiff, but the engine is going fine. The disease puts an enormous strain on families, and I'm frequently amazed that more people don't split up because of it.

I've always called him Ray but he insists on calling me "Doctor''. Ray's children call me Andrew, his friends and colleagues call me Andrew. I've stayed with Ray in his flat and we've had many great nights out together, but, for him, I expect I'll alwaysbe "Doctor''. I understand why. If I was Andrew, I'd turn into an ordinary guy. I'd no longer be the miracle man. For patients who've been as low as Ray has, they need something to cling on to. It's important to believe in miracles.

Obviously, there's a danger in a doctor becoming too involved with a patient. It's something we rarely take on, because there just isn't the time or the emotional space in our lives.

Most patients want their doctors to become friends as well, but, realistically, it's not possible. We have to retain some privacy. With Ray, from the very beginning, the privacy didn't seem to matter. He has my home number, although he very rarely uses it. I'm the one who phones every couple of weeks to see how he is.

There are times when Ray is very scared and very depressed. It would be completely abnormal if he wasn't. He said to me once that as a child he had a recurring dream that his life would be short but glorious because something round the corner would come and scupper him early on.

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