Motor Neurone Disease (MND) is the name given to a related group of diseases that affect the nerves which carry messages from the brain to the muscles. The disease is degenerative, progressive and incurable.
Gordon Aikman, the Director of Research for Better Together, has recently been diagnosed with the disease and has been brave and forthright in talking about his reaction to his diagnosis, what that means for his life and the energy he is dedicating to campaigning to support research and improved services for MND.
He highlighted cases where MND patients have to pay for some of the essential care they need and spoke of the fact that 80% of funding for the country’s seven specialist nurses comes from charitable donations.
Before Gordon went to Better Together, he worked for Scottish Labour MSPs in the Scottish Parliament and I got to know him a little. It is hard to believe that someone so young and healthy can have been diagnosed with such a terrible disease and yet it is inspiring to see him meet his diagnosis head on, and to use his energies to campaign for more support and improved services for people with MND.
He has been willing to talk about his condition and last night, in an interview on Scotland Tonight, he gave an insight into how difficult it was to take in that he had MND; the practical challenges that he faces and will continue to face; as well as his desire to live his life to the full while he can. He has eloquently articulated the struggle that he and the hundreds of people in Scotland with MND at present are coping with – and through that, is helping to educate us all on this terrible illness.
Gordon set up a JustGiving page to support the work of MND Scotland – and the response to him and his story has been so profound that since it was launched a few weeks ago it has raised over £35,000 for MND Scotland.
MND Scotland is a charity dedicated to people living with Motor Neurone Disease, their family, friends and carers. The charity’s website is an invaluable resource and is home to a huge library of information and support materials covering all aspects of the disease and the impacts it has on people’s lives.