Most people think of Motor Neurone Disease as being a rare disease and know little about it. In fact, everyone of us has a lifetime chance of 1 in 300 of getting this disease, for which there is no cure and no periods of remission. Every day 6 people are diagnosed in the UK and another 6 die with about 5000 people alive with MND in the UK at any one time. The average life expectancy from diagnosis (which is difficult as there is no definitive test for the disease) is 21/2 years, but 30% die within 12 months and 50% within 2 years. It does not care about your sex, ethnicity or age, but it tends to mainly affect older, rather than younger, people, although in Cheshire we have had a 17 year old with it. 1874’s ex-manager, Paul Bowyer, lost his father to it about 6 years ago and Vic’s ex-captain, George Melling, died from it in 2022 aged just 37.
The motor neurones carry messages from the brain to the spinal cord and from the spinal cord to the muscles. The disease prevents the neurones from transmitting these messages correctly which stops the muscles from working, so people lose the ability to feed themselves, to walk, to move their arms and legs and eventually to speak, eat and breathe.
In the Cheshire branch, which only covers those parts of Chesire West and Chester and Cheshire East, south of the M56, we have 79 people suffering from the disease. Every month we have social meetings where those living with, and affected by, the disease can meet and get to know others who have the disease. 2 or 3 times a year we have carer’s lunches to which current carers are invited where they can talk completely freely with each other. We have also started a walk and talk group mainly, but not specifically, for past carers, and have 2 walks most months.
Members can get grants from the branch to assist with the hire or purchase of expensive equipment like stair lifts, hoists and especially with riser recliner chairs. These can be so important to people with MND. We also can give grants for people to have respite or pamper breaks, and have young carers grants for those affected by their parent’s illness. In the last couple of months we have given grants for items as diverse as a new printer for a school student whose parent has the disease, for hair appointment and a new dress for a member’s wife, for a new tv and various other items for one member, and for riser recliners to several and special headrests for a riser-recliner. We have also funded earlier in the year a neater-eater machine that helps to feed a member who can still eat but has lost the use of their hands. In total we have given grants from our funds to our members from the start of the year in excess of £22,000 and a further £7,500 for research.
By donating today, you will be assisting people living in Cheshire and affected by this dreadful disease. Thank you for your support.
Richard Webb
Chair, Cheshire Branch, MND Association