In 1963, the then Oxford student and theoretical physicist Stephen Hawking was given two years to live. He was diagnosed with motor neurone disease, that most callous and arbitrary of illnesses, which would gradually detach him from his body and organs, paralysing as it went.
In fact, the progression of his condition has perhaps been unique – defying his diagnosis with considerable flair, he is still very much with us. This is certainly not the norm.
Motor neurone disease (MND) is the name of a group of diseases which affect the nerves, or motor neurones, in the brain and spinal cord which tell muscles how to behave. It is a gradual degenerative disease, it is life shortening and there is no cure.
The illness kills a third of victims within a year and more than half within two years of diagnosis. So the name of the game is learning to live with the disease; to have the best possible support for the best possible quality of life, be that with mobility and personal care, relationships and family, speech and communication or just eating and drinking: the tools of life need to be brought into sharp focus.
Last week I met with Kerry Palmer, Regional Care Development Advisor with the MND Association and the fabulous and spirited Heather Twine, herself a sufferer. And this week they came to Westminster alongside many others to meet MPs and parliamentarians and raise awareness of this cruel disease.
Yes, this is a rare condition, but it is one which affects our area and I’m delighted to be able to stick my oar in and prod here and there to raise awareness and prompt for support where it’s needed.