Saturday, 15 January 2011


I have a disease, it’s an annoying thing
It doesn’t hurt, or ache or sting
It just makes me weak, my walking’s crap
So I sit in my wheelchair, a cat on my lap
I can still speak, I’ll give you that
I can talk on the phone, have a chat
But that’s about all I can do
I even struggle going to the loo
This disease catches you unawares
Before too long you can’t climb the stairs
I can use my computer, still, that’s a bonus
But, getting dressed is an added onus
My husband dries and dresses me
I can, just about, shower and have a wee
Eating’s a bugger, it’s so messy
I get covered in food, clothes can’t be dressy
My neck is weak, head inclined to flop
A headrest supports me so my head won’t drop
But, being the loud, gobby lass, that I am
I make myself heard, don’t give a damn
Tell the authorities what I think
Make a noise, create a stink
Who else will help us to be heard
Getting help? Don’t you be so absurd!
MNDers, We’re the forgotten few
We all die off, disappear from view
It’s easier to ignore our plight
But we won’t give up without a fight
If you see this , remember in the main
It’s our bodies that die, not our brain
Don’t speak to the carer if we have no voice
We can hear but not respond, we have no choice
I’m doing my best to speak for those others
Who can’t speak for themselves as no-one else bothers
If you can help in any way
Contact the MNDA
We haven’t got a cure as yet
But there’ll be one someday, on that you can bet
It will be too late for most of us
But let’s not be selfish, make a fuss
Even if you could just try to understand
What MND does to woman and man
That would be a brilliant beginning
To appreciate a disease that has no ending...
Just death!


  1. You have an incredible spirit and what a gift of writing!

  2. You sum up MND so well. I went to collect my new Motability car yesterday. I had met the dealer once and emailed him several times. Yet he kept talking to my carer! I hope that you'll write more. x