Neill is 51 years old and lives with acquired brain injury (ABI) and tonic epilepsy as a result of a bicycle accident in 1984. He is the main carer for his mother, who has Alzheimer’s disease.
Neill does not have paid employment, but he works for the brain injury charity, Headway, where he is Treasurer on the board of the organisation. He also tutors self management courses for Headway.
What self management means for Neill
Neill’s short term memory has been damaged by his brain injury. He has self managed since his accident, and long before he ever heard the term ‘self management’. He feels that it’s a term that is still unfamiliar, and possibly misleading, to most people.
For Neill, self management is about getting on with life following his accident and finding ways of living with his short term memory problems, drawing support from others as and when he needs it. He began to self manage in large part because of the lack of support provided by health and social services in the East Midlands, where he lived following his accident.
With my condition, I think it’s important to be in control because the doctors don’t understand all the ins and outs of what actually happens when you have a brain injury.
He has had to develop techniques to deal with his memory difficulties, including the use of Google calendar. He finds that this is helpful not only for him but for his mother’s short term memory problems arising from her Alzheimers.
Neill takes anti convulsive medication for his epilepsy and has not had a seizure for the past five years. He had a stroke-like incident two years ago due to the high dose of one of these drugs and has since had his medication adjusted.
Neill believes that the key to successful self management is to accept that you have a long term condition, understand what this means for you on a day to day basis, and to identify and find the help that you need to be able to get on with your life.
Self management doesn’t mean that you take complete control over your condition. What it means is that you help control your condition with professionals.
He sees these steps as vital to being in charge of your own life in spite of living with a long term condition. Self management has enabled Neill to graduate with a BSc in Gaelic and Astronomy and a Diploma in Information Technology.
Self management gives you more control over your condition, and allows you to be in the driving seat.