Monday, 28 September 2009

MND is....

Remember those cute Love is... cartoons by Kim Casali?

I thought it's time for some MND is...

MND is... an illness that totally changes your life. MND stands for Motor Neurone Disease and is also called ALS or Lou Gehrig's Disease. It paralyses the muscles which can affect mobility, speech, eating and breathing. It kills five people in the UK every day but raising awareness is like trying to get blood out of a stone! Is my pain really too shocking for TV?

Those are the facts; this is what MND is to me:

MND is... being unable to use my arms. But I can type with my chin which is pretty cool! I can only read e-books and just yesterday some titles were recommended to me. I happily started searching online and couldn't buy any of them in e-book format, sooo frustrating. The worst part of floppy arms is when you literally have an itch you need to scratch - I'm getting itchy thinking about it!

MND is... becoming an employer. I need 24/7 care and have to arrange everything, from hiring to firing and paying salaries. I got ill and became a recruitment consultant/bookkeeper. I don't like those jobs and am pretty rubbish at them. Needs must and all that. I have a wonderful team of carers now and am grateful that I have free care, enabling me to live at home with my children. Many MND sufferers are not so fortunate.

MND is... speaking in a alien tongue! Slurred speech was one of my first symptoms. I went from sounding drunk to speaking unintelligible gibberish. But I have the technology and an American synthesized voice, so can't complain. I do believe that losing my speech has been the most difficult aspect of MND for me and if I could have one thing back, I would choose speech.

MND is... a window of opportunity. I don't take anything for granted anymore and live life to the full. I believe that I've experienced more since diagnosis than I would have if I were well. Would I ever have started writing or participated in films and photo shoots as an able, middle-aged mum and housewife? I've met some amazing people, both in person and through social networking sites. I try to share my knowledge, as a long term survivor, to help others and raise awareness and funds. I wouldn't go back to my old life but dream of seeing a world free of MND.

In conclusion, MND is a horrific, silent killer and we desperately need a cure. If anyone reading this would like to help in any way, please give me a shout, thanks!


  1. Hello Sarah, great blog.
    I would think loosing your arms is worse than loosing your speech. But what do I know. I only lost my legs. I think you are doing a great job for awareness.
    I love you posts. I was shocked of, but still love your ALS commercial.
    Greetings Lianne

  2. You are in INSPRIRATION to us all and we are always in ore of your blogs, thoughts and feelings. Your outlook remains so positive and your work continues to inspire others too!
    Keep us the good work.
    Love from BARRY and Louisa x