Personal Stories: Lewy Body Dementia

My story with regard to the Lewy Body Society is fairly straightforward. My precious mother got ill in 2000 and we did not know what was wrong with her. My father took her to at least 25 doctors before she was diagnosed with DLB in 2005. By that time she was bedridden and in and out of consciousness. Once the diagnosis was made I decided that I wanted to support whatever charity there was in aid of this horrible disease. There was none in the UK so, with invaluable help from Prof McKeith of Newcastle University, I founded the Lewy Body Society in 2006. Although the doctors wrote my mother off in 2005, she lived another 3 years. My father was able to keep her at home and she was lovingly tended by 3 angels round the clock. I am quite certain that it was love that kept her alive. My parents had been married for 65 years when she passed in April 2008. She didn't want to leave him. The day before she died I was summoned urgently. This had happened before and she had recovered by the time I got to Florida from England. This time she waited for me and died 40 minutes after I arrived.

The charity is information-driven with the 2 missions of raising awareness of and supporting research into Lewy body dementia. For the first few years it was a one woman and her cat operation. I now work with 3 other activist trustees as an ops team. We have all lost a part to DLB so it is a passion for us and not just a job. We are all volunteers and as the charity uses a virtual office and has very low operating expenses, we are able to put at least 95% of all donations into research and awareness.

At the moment we are funding research into inflammation and DLB at Southampton University. In the autumn we will start funding 3 other important projects - one into skin punch biopsies as biomarkers, one at Cambridge into advanced imaging and the third into familial aspects, at University College, London.