When I was first diagnosed with Parkinson’s disease, I was 53 years old, and then Lewy body dementia. They were indeed dark days for me, my wife Helena and our families. Little did we know what lay in store for me, and after the initial shock and worry and fear, we both decided to take this on, head on. I went on to become an advocate and a voice for people living with dementia and, the journey started when my GP advised me that I should meet up with my local dementia advisor, which I did and, in turn, I joined the Alzheimer’s Society of Ireland, where I have become a strong advocate and voice for people and their families who are living with, and indeed affected by, dementia. I am currently Chairperson of the Irish Dementia Working Group, as well as being Vice-Chairperson of the European Working Group of People with Dementia (EWGPWD), at Alzheimer Europe. I am co-founder of Lewy Body Ireland, part of the Dementia Trials Ireland, as well as other organisations.
I often write a weekly column for three newspapers and have written articles for numerous magazines as well as doing a lot of media work, on both radio and television. I became one of the first people in the world to write a book about Lewy body dementia, from the patient’s point of view. My book is called “Lewy Body Dementia Survival and Me”. I have since released a second book called “I am KEVIN not Lewy”, which is a book of hope for anyone who has been given a diagnosis of a disease that is both progressive and incurable. I am currently working on my third book and am also the co-author of four research papers, but in my wildest dreams I could never have expected to get such a wonderful honour as I did on 10 October 2022. Longford International College, in Ireland, gave me the Presidential Award, for my outstanding contribution for work with Lewy body dementia.
Other people to get this award were Nicola Byrne, CEO of SHINE, a national organisation dedicated to the rights of people affected by mental health issues, Mike Phelan of Manchester United, who is considered to be one of the most astute coaching minds of the game of football and who spent years with Sir Alex Ferguson, coaching players like Cristiano Ronaldo as well as many other famous names. We were just three of the six who got the Presidential Awards this year. Others to get awards on that day were football players who have won everything from the World Cup, to the Champions League, and their national league; people like Petr Cech and Jurgen Klinsmann, for Masters of Business Administration. In my speech, I dedicated my award to the families of those people who had dementia and who died alone and in fear in care homes, during COVID. I said that they did not die in vain, that their legacy would be spoken about in 100 years’ time and that the same mistakes would never be made again. I also thanked my family and every organisation that I am involved with, finishing up by saying that it was one of the greatest days of my life.
