Thursday, 24 December 2015


I am 50 today. I was diagnosed with motor neurone disease when I was 34. My GP walked into my bedroom where I was sleeping with my week old son, and said that I probably wouldn't see him grow up.

It's been a tough 16 years, I can't deny it. I mourned for my independence and my old life for years. I still have problems with carers and this year was particularly bad because of one carer. I still haven't recovered, physically or mentally. Unfortunately, I wasn't the woman with a husband who wanted to protect me and care for me lovingly, so I'm vulnerable. I never felt that until recently. 

But I made a new life and generally I'm happy. I adore my children, Aviva and Eric. I know I'm very lucky to still be here with them. I've watched many friends lose their lives to this insidious disease, with great sadness. I don't know how long I have on this earth but I don't feel that my death is imminent. Who knows?

MND has much more awareness than when I was diagnosed, and I've always believed that awareness will lead to a treatment or cure. There are now many brave people with MND who are willing to talk about their experiences, which really helps.

I just watched a video from Israel about a man with MND who has recovered after a new treatment. There is hope.

Happy birthday to me and happy holidays to you!