CRUSADE Fund the fight to cure MND
WHAT DO you do when you are told you are going to die? My late husband Gordon Aikman was a fit and healthy 29-year-old when doctors broke the news to him. He had motor neurone disease, or MND, a degenerative terminal condition.
A former gymnast for Scotland, Gordon used to backflip across the beach, he was a regular on the dance floor. He balanced a busy social life with a high-pressure job in politics.
Gordon’s neurologist welled up as he explained that within months his muscles would start to weaken and waste. He would lose the ability to walk and look after himself.
Many with MND stop being able to eat, talk and eventually breathe. Half of patients die within 24 months of diagnosis.
No one knows what causes the condition, let alone how to stop it. There is no cure, no treatment, nothing.
A few months before, Gordon had noticed his hands were getting numb. He struggled tying shoelaces and buttoning shirts. But he never imagined it would turn out like this.
“I don’t believe what he is telling me. I shake my head in disbelief”, Gordon wrote at the time.
“My head is a mess. I stand up, walk across to the window, run my hands through my hair and stare out into the middle distance.
“My mind goes blank. I don’t know what to do. I’m 29 years old and I have just been given a death sentence.” Gordon’s response, however, was not to wallow in sadness or pity, something that would have been perfectly understandable. Instead he got angry.
Angry about how little was known about MND. Angry that the charity MND Scotland was having to fundraise to pay the NHS salaries of the country’s specialist MND nurses. Angry about the limited scientific research into the condition.
He was especially frustrated after watching Eddie Redmayne’s Oscarwinning depiction of Stephen Hawking’s MND diagnosis in The Theory Of Everything.
The physicist’s experience in the 1960s seemed remarkably similar to Gordon’s own. How after five decades had there been so little progress?
Doctors did give Gordon one pill that might slightly slow the disease’s progress through his body.
But even they conceded: if there are any negative side-effects, just stop taking it. It’s not worth it.
Everything exploded that year: 2014. As the Hawking film hit cinemas, the viral “Ice-bucket Challenge” was zipping around the globe, raising hundreds of millions