STORIES FROM FRIEND AND RELATIVES
My daughter Amy has Dystonia, a neurological condition that puts the muscles into spasm and affects around 40,000 people in the UK and 300,000 in North America .
Amy was born in 1985 and was a perfectly normal baby. As a precaution we arranged to take Amy along every year for a check up with Professor Marsden at the National Hospital.
Then in the summer of 1994 I noticed Amy writing with her wrong hand. I asked why and was innocently told she couldn't manage to hold a pen anymore and had taught herself to write with her other hand. I knew in an instant that this was the tell tale signs of Dystonia and after making a video of her handwriting and sending it to Professor Marsden we found ourselves attending for an appointment at Queen's Square.
In anticipation of the diagnosis I arranged for us to have a private visit to the top of the BT Tower as a way of trying to keep our minds off what was likely to be said in the afternoon. That was the 6 th Sept 1994 , and as expected Amy was diagnosed with early onset generalised Dystonia.
Although the news was half expected, it was an extremely difficult time. As a family we were determined to carry on and help Amy grow up like any other child. It wasn't easy but we had incredible support from family, friends, Professor Marsden and the team at the National.
But in truth nothing had prepared me for what happened on the family holiday in Scotland . Amy had been experiencing increasing problems with her ankle and leg in addition to her arms but she was still able to get around, albeit it was distressing to see her gait. Then one morning she found it impossible to walk the 100metres to the beach, it was truly then I felt our world had fallen apart as I really hadn't expected the deterioration to happen so quickly. There we were just a few days into the holiday and with Amy unable to walk we were effectively isolated. I took the decision to leave the caravan and instead take the ferry to Mull where we stayed in an isolated farmhouse and went whale watching by boat as means of salvaging something out of the dreadful situation we found ourselves in.
Amy became a wheelchair user, but the period of seeing her give up all the things she loved like singing and dancing on stage which she had done since the age of three, playing saxophone and successfully competing in music festivals was heartbreaking as the illness became more and more severe, and the drugs with their awful side effects had little effect.
Coping with one wheelchair user was easy, but two was a real challenge. Gone was the spontaneity of just popping to the shops. Instead each trip turned into an expedition with Amy using her electric wheelchair.
Amy took up wheelchair tennis, introduced to the sport by someone who at that time managed the local tennis centre and the Men's Great Britain wheelchair team. Her claim to fame was having a few balls with Greg Rusedski on centre court an hour before the main doubles match between India and Great Britain in the Davis cup qualifier round. Such a generous gesture that lifted all our spirits. My claim to notoriety was failing to capture more than a second of the occasion on video!
But like everything else the enjoyment of weekly coaching was snatched away when the spasms to her back became so bad it was impossible to play. As a family we still tried to keep a sense of normality, but in truth it was so hard. Always having to have someone with us on holidays, and watching Amy come home from school in tears time and time again as she found herself struggling with the pain of the spasms and the teasing of others. It's difficult to describe what its like to watch a fellow human being writhing on the floor as the only place where any respite could be found and meals taken. It's impossible to express the distress experienced when it's your own child and nothing in the cocktail cabinet of drugs can restore life to true normality.
Then imagine, being told on one of the regular visits to the National Hospital that there was a new procedure that might be able to help. Having listened to a description of what we now know as Deep Brain Stimulation and agreeing to give it a go, it was a surprise to be told that the hospital didn't have a surgeon who could perform the operation but were working on it. Eventually we met the surgeon, Professor Marwan Hariz an incredible man who listened to our concerns and answered honestly all the searching questions we had prepared in the intervening months.
We left the meeting with complete confidence in his ability to make a difference to Amy's quality of life. Although no promises could be made about the extent of improvements we trusted him implicitly to look after Amy in due course. We later learnt that it was the Parkinson's Appeal that had been instrumental in bringing such an acclaimed neurosurgeon to lead the Functional Neurosurgery Unit.
After a few false starts the operation took place when Amy was 17 and she was one the first Dystonia patients at the National to have electrodes implanted into both sides of the brain. I will never forget taking her to theatre and leaving her in the capable hands of the team as she succumbed to the general anaesthesia.
In keeping with Professor Hariz's compassion he even allowed Amy to take a small glove puppet squirrel in to theatre. Another member of the team called us during the procedure to let us know that everything was going ok on what was a very long day. Early evening sitting in the theatre waiting area we watched a trolley move swiftly from the recovery suite to the High Dependency unit. We couldn't see the patient but we did see the squirrel and realised it was Amy and she was fine.
The following day she was back on the ward and incredibly was completely still with no spasms and none of the associated pain. It was wonderful, and to our amazement she was walking and before leaving hospital just over a week later was able to walk about 100metres.
The transformation was beyond our wildest dreams, and although ever cautious about the benefits disappearing we have been so lucky. Amy not only responded incredibly well to the operation but the opti mum settings for her stimulation were quickly found.
It's not a cure, and Amy does still get odd spasms but the transformation is truly miraculous. After seven years in a wheelchair she is now leading a near normal life, driving, dancing, and making up for the lost teenage years.
As for me, the spontaneity back into popping out to the shops, or days out. Its fantastic, and so pleasing to see Amy blossom after years of struggling.
It doesn't end there, as almost a year to the day after Amy had her operation Amy and I went to St Paul 's cathedral. To climb the 533 steps to the top outside gallery. Somehow it seemed the right thing to do, giving thanks for the freedom provided to the family after all those years in the wheelchair and achieving something quite extraordinary. It gave me enormous pleasure to photograph Amy achieving something so remarkable.
I am extremely proud have pulled together the UK's first International Deep Brain Stimulation for Dystonia Conference which brought together patients from America, Belgium, Holland and across the UK with medical experts in this highly specialised field. All at no cost to delegates in the magnificent Belvoir Castle , thanks to the generosity of the Duchess of Rutland who responded to a request from Amy for a room after winning the "young achiever of the year category" In the Women of Achievement awards. A truly memorable event which was captured on DVD, and made available towards the end of 2005 through Choices UK a video rental company who have a presence on most high streets across the UK .
The operations have restored a sense of normality and hope and for that we will always be in debt to the fortitude of Lyn Rothman in setting up the Parkinson's Appeal and securing the services of the wonderful Professor Hariz and his team at the National Hospital , London .
I am honoured to be Vice Chairman of The Parkinson's Appeal which is the only fund dedicated to Deep Brain Stimulation and the research and knowledge gained in London is helping people around the world.
Perhaps like myself you would like to help by making a donation or organising a fundraising event to ensure that other families can benefit from Deep Brain Stimulation. Together we can make a difference!