Definitely not a Happy Easter

My Easter holidays have ended on a sad and depressing note. I learned yesterday that a friend with MND died that morning. He is the second member of our local MND group to pass away in 15 months. I had known Steve about a year and as well as meeting every few months to watch everyone else have lunch, we were in regular email contact. He had a fantastic and irreverent sense of humour and although I only met his wife and daughter briefly, he was a much loved husband and father. Steve had been responsible for raising the money for the research I was discussing last year. Like all of us, he never expected any resulting treatments to be in time to benefit him but he didn't even get to see the research start.


The news of his death resonated particularly as Steve was at a very similar stage in disease progression as myself and a simple cold which spread to his chest was all it took. So it is hard not to let this news get to me on several levels.

I received another email late last night from a facebook contact whose husband had MND saying he also died a day earlier. I didn't know Graham personally but gather he was largely bed bound with a tracheotomy. He also had a young family and like Steve, had been diagnosed more recently than me. So the phrase 'borrowed time' is difficult to get out of my head, particularly when last night's overnight oxymetry test didn't need a specialist to interpret that the result wasn't good.

But for the moment my thoughts really are with Steve and Graham's family. They have lived through the nightmare of this disease and have just experienced its inevitable conclusion.