My most memorable moments have been the laughs we have had
I lost my father to MND in 1973 when I was 18 and successfully managed to avoid any contact with MND for a further 18 years - such were the painful memories.
However my wife Julie (an occupational therapist) suggested I meet one of her clients with MND. I was hesitant at first but when I saw Gordon’s plight, I was moved to action and cobbled up a pipe holder so he could still smoke his beloved pipe. Soon after Gordon, his wife Jean, Julie and myself went to an MND conference in Birmingham and a chance meeting in the lift with John Matthews of the MND Association led to a discussion about forming a branch in Milton Keynes. Within a few months the Milton Keynes branch was formed (1990). Gordon, Jean and John sadly have all died, Julie and I have amicably divorced and despite the branch nearly imploding on a number of occasions, it is currently thriving with Julie and I continuing to work well together.
I have been chair for more years than I care to remember and certainly more than is recommended. Occasionally I have done other roles when we have found someone willing to take on the role. I see the role as a team builder and communicator. Without the dedicated team we have, the branch could not function. The whole team consists of over 100 people and includes the branch committee, our members, the health professionals from the statutory services as well the support teams from the Association. This ensures that our work is well co-ordinated to provide people affected by MND in the North Bucks area with the best possible care and support.
I have always dreaded the thought of inheriting the disease and my worse fears were confirmed when my father’s cousin’s daughter Jenny died from MND in 2000. She was only 47. Since then my work with the Association has become a passion. But the reason why I am still with the Association after nearly 20 years is that we’ve always had fantastic encouragement and support from the Association.
My most memorable moments have been the laughs we have had. In particular I recall Gordon going into hospital for a few days respite. He couldn’t talk and Jean stayed with him most of the time. However I took Jean home for shower/change of clothes and when we returned two hours later we learnt that a nurse had tried for some time to remove Gordon’s teeth to clean them. Unbeknown to her, Gordon still had all of his own teeth which is why they wouldn’t budge. It sounds awful and probably was at the time but we have laughed about this for years.
I would certainly recommend that others get involved whether they have MND connections or not. The work is truly fulfilling. The way that so many people with MND cope with their illness is what inspires me to carry on. I know it does to others in our branch. Above all it gives me hope. If there is a cure, I’m sure we will find it.