So far as I know I don’t have Motor Neurone Disease, and thank God my children and close family aren’t directly affected either. However I have friends who have been touched by this brutal, brutal illness — including a close mate whose sister noticed one year that she was struggling to write her Christmas cards. I am sad to say she was dead 16 months later.
For a long time I have wondered what, if anything, I could do to help people who suffer from one of the most savage diseases imaginable. Patricia, in the picture above, is as sharp as a tack but MND has stolen her voice, which I can see so frustrates her.
Maybe the key is simply for us all to be aware of it. When I was dancing with Karen Clifton we wore T-shirts to publicise the MND Association, which does great work.
There is more on Motor Neurone Disease here. But so many questions about what triggers it remain unanswered.
By chance one of the key figures in local MND campaigning where I live in west London, Janis Parks, was walking past my house one day and asked if I wanted to be involved locally. That’s how I met Patricia and other people who are affected near me. The picture at the top of the page is from the Christmas party for the MND Association West London & Middlesex branch. I met some great people there: Deepa and Rekha lost their aunt to MND.
When the time came to make a brief speech, I said how I felt it would be good if people like me — who are not directly affected by the disease — could still be conscious of what it does and supportive of those who struggle with it; either because they are ill or because they are the chief carer for someone with MND. Wouldn’t it be great if we all got involved, just a little?
And I said something about Strictly. Dancing with Karen, and watching her move, for the first time in my life I became aware of how precious movement is; and how those neural pathways from the brain to the feet work. And I realised how valuable those mechanisms are, and how I would hate to lose them.
When I was in Blackpool the other week, supporting my remaining friends on Strictly, I got a tweet from a local lady saying: what about a cup of #Tea4MND? That’s how I met Jayne Halhead and her family. We thought we should go out on the sea front for our tea — crazy or what? Jayne and her sister (on the left) lost their father to MND, and you could see how hurt they were by watching him suffer.
By the way, if you enjoyed the famous ice-bucket challenge, that was started by MND campaigners in the States. They call the disease ALS over there (and also “Lou Gehrig’s Disease” after a famous baseball player who succumbed to it in 1939)
Anyway, it’s a really nice idea, a hashtag that gets people to share a cuppa and talk about the illness, and here we are.