Friday, 26 August 2011


Wow, I have just won the lottery;
But please don’t send begging letters to me.
I opened my e mails and there it said,
‘News about your ticket’; but it won’t go to my head
I’ve won five times this month, must be a record  
But I won’t get excited as the amount that I’ve scored
Isn’t quite as amazing as this all sounds
It’s a measly, paltry thirty five pounds!
Still, when all’s said and done, it’s better for me
Than a 'poke in the eye', wouldn’t you agree ?

Tuesday, 23 August 2011


I sit here each day, my mind wandering
Where do I go from here, pray?
Am I destined to fritter away what is left
Of my life, sitting here every day?

My legs, they hardly function
My arms, they are rubbish too
My neck gets so tired I find it hard to explain
The feelings of frustration to you

I daydream about what things might have been
It is silly, I know, and depressing
But, mainly, I ask myself why do I bother?
As carers do my washing and dressing

My retirement was to be idyllic
Three months of the year in the sun
The rest of the year I would fritter away
Enjoying each day one by one

Fate has dealt a blow that is bitter
MND is surely no fun
It robs one of life bit by little bit
Not to be wished on anyone

I try hard to remain somewhat positive
Think about what I can still do
Unfortunately, the list is not very long
But I still have a voice, that is true

I can carry on writing my poetry
Or whinge, as I do in my blog
I could write the odd article about MND
And how everyday is a slog

I can still shout about how bad life is
Being stuck in a flippin’ wheelchair
Doing nothing else but computing
When I’d much prefer to be elsewhere

But, there’s light at the end of the tunnel
A new culprit has reared up it’s head
Though I don’t know if the research will find
A real treatment before I am dead


‘Ubiquilin’, the strangest word
When one says it, it sounds absurd
But this word, whatever it may mean
Could be the answer to an MNDers dream

Saturday, 20 August 2011


Inside I am screaming, I am angry to the core
I am so frustrated, I’m sure you know the score
Other MNDers will know just how I feel
Everyday it’s just the same, I’ve been given a raw deal

Things I was so good at, like organizing rooms
I can no longer physically do, it fills my life with gloom
My brain is fully active, with no deterioration
But  that fact doesn’t fill me with elation

Asking other people to help me out with tasks
Should be fairly easy and not too much to ask
Why then do I feel that no-one seems to care?
That they’ll do the very minimum, sometimes I despair

I’m feeling very lonely and isolated, too
But when I go out I feel like an animal in the zoo
The other day my carer boldly asked of me
‘Is your disease catching ‘? How ignorant can one be?

Today I feel like ending what little life I have
I feel emotionally abused, certainly don’t feel love
What is left to give me cause to want to live?
Only my two daughters to whom, my love I give

This awful disease leaves me no desire to carry on
Only when I expire will  the battle be won
Today I see very little reason to persist
I feel that I am living each day just to exist

Even services set up to supposedly help our plight
Seem obsessed with bureaucracy, and I have to fight
These people seem to forget what traumas we all face
‘Sorry, panel says, ’Nah’, it’s a bloody disgrace

Fortunately I do not always feel like I do today
Sometimes I can cope, there’s not much more to say
I certainly don’t see a tunnel filled with light
But I suppose that I won’t give up without a fight

This disease can fill you with roller –coaster emotions
Knowing there are no pills or any secret potions
To help us save our neurons from obliteration
There’ll be no miracle cure in ours or other nations   ........

Let’s face it; for those of us with MND, life’s a bitch, and then you die!

Friday, 19 August 2011


I have a disease, it’s an annoying thing
It doesn’t hurt, or ache or sting
It just makes me weak, my mobility’s crap
So I sit in my wheelchair, cat often on my lap
I'm lucky, 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 carers,now,dry and dress me
I can, read Kindle books, watch TV
Eating’s very hard and exceedingly messy
I get covered in food, clothes can’t be dressy
My neck is weak, head inclined to flop
Headrest and collar support 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 one has no voice
They can hear but not respond, they 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!