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Duncan's story

Duncan Weston is 62. He has lived with epilepsy for 50 years. He doesn't trust himself to take cash out of a  high street bank machine as he knows he is likely to have a seizure mid-transaction and walk away leaving his card and his money in the machine.

He often wanders obliviously across the road in the course of a seizure, unaware of the dangers of traffic and can't travel any distance by bus as sunshine flickering  through trees or lamp posts can trigger a seizure.

'I have tried to escape from hospital when I had a seizure during an EEG,' he says, 'and recently woke up surrounded by paramedics when I had a seizure at the cash desk of my local bank.'

Cocktail of medications

Duncan, who lives by himself in Birmingham, has tried 15 different anti-epileptic drugs, often being prescribed a cocktail of  medications.  Not only have the drugs failed to control his epilepsy but  some of them have resulted in debilitating side effects including bleeding gums and vertigo.

He has tried a vagus nerve implant to control his seizures and in 1992 underwent right temporal lobe epilepsy surgery but still his seizures continue.

I hope that by donating my brain for research, it will mean that in the future someone like me will be able to lead a seizure free life, drive and work without a problem, and of course, get their money out of a cash point machine without fear of having a seizure.

'The year I had my operation I had had 82 seizures,' he said. 'Unfortunately I also have a second  focal point for my seizures but because of the location, further surgery could risk damaging my memory.'

Initially Duncan's seizures happened at night  - he has broken two wooden bed frames during seizures  - but over the years they have changed, often coming in clusters during the day. He can still have as many as 60 a year.

Epilepsy Society Brain and Tissue Bank

Duncan is always willing to trial new drugs and refuses to give up on one day finding something that will give him seizure freedom. Now, however, he is looking to see how his own epilepsy experience might help future generations. He has signed up to donate his brain to the Epilepsy Society Brain and Tissue Bank so that it can be used for research at the end of his life.

'If I was to be cremated, my brain tissue would just go to waste,' he says. 'I hope that by donating my brain for research it will mean that one day scientists will be able to find a cure for epilepsy or find the right combination of drugs to control seizures. If they could discover a drug that you could take once a day to control your seizures, with no side effects, that would be a great improvement.

'I hope that by donating my brain for research, it will mean that in the future someone like me will be able to lead a seizure free life, drive and work without a problem, and of course, get their money out of a cash point machine without fear of having a seizure.'

More information

Find out more about donating your brain to help researchers at the Epilepsy Society Brain and Tissue Bank understand more about epilepsy.