Friday November 29th 2024
Doddie Weir and Christine Grahame in the Scottish Parliament in 2019.
Christine Grahame MSP writes her monthly column for Midlothian View
More than 40 years ago, a friend and colleague told me she had been diagnosed with Motor Neurone Disease (MND). Neither she nor I had any real knowledge of what that was or what it meant. These were of course in the days before the internet where you can Google now almost anything. Within a short time she was confined to a chair, and reduced at first to being fed only Complan. Again as swallowing became more and more difficult, that was nor a dietary option, and indeed at one point a perfume dispenser was adapted to squirt water directly into her throat to allow her to keep her to have some fluid. Rough and ready compared thankfully to today’s adaptations.
But there has not been progress on a cure or even stabilising this dreadful disease. Now you will all have heard of Doddie Weir and seen him in his individual garish tartan suit. Having retired from international rugby, in 2017 he was diagnosed with MND and told he would be confined to a wheelchair within a year.
Life expectancy is reckoned between one to five years with an erosion of any mobility as the body degenerates, until swallowing, breathing, speaking is taken away too. It is a diagnosis where the patient knows exactly the destination and the route the disease will take. Doddie used the time he had to set up the My Name’5 Doddie Foundation in 2017 to raise funds for research into motor neuron disease.
Since that time, the Foundation has invested over £11 million in research into effective treatments and a cure for MND, but this remains a challenging disease and this will still be a long road to a cure. The Foundation’s single largest annual fundraising campaign is Doddie Aid, which runs from 1 January for five weeks. It sees participants signing up with a £20 one-off donation for their own personal exercise challenge, whether it be running, cycling, swimming, dancing or walking, over the five weeks.
In my case, that will be limited but we each can set our own achievable targets. I joined in this and the Scottish Parliament recently. Money raised will be invested in research, collaborating, partnering with others to influence the research agenda, and involving people affected by MND in everything the charity does.
Did you know that approximately 1,100 people are diagnosed with MND every year in the UK and that up to 5,000 adults in the UK are affected at any one time. It is not as rare as you would think.
Doddie Weir, born in Edinburgh lived most of his life in the Scottish Borders and died there on 26 November 2022. I had the privilege of meeting him while he was still out and about and remember a gentle giant with an endearing smile despite that dreadful disease. 40 years on from my friend and colleague, a cure is no closer but you can do your bit by taking part in the annual fund raising in January. Just visit www.myname5doddie.co.uk
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