Friday, 20 May 2011


Last night I had an epiphany; I know the rot is setting in
I think that I am losing the fight, the one I'll never win
There I was, just stranded, lying prostrate in my bed
Unable  to release my ear bent uncomfortably under my head
My knee was sore, my hip it hurt, couldn't move to clear the pain
I couldn't sleep, don't want to have a night like that again
But the bear facts are that this is the slippery slope's begining
Unfortunately, with MND there can be only one ending.......

..........One day later, better news, my knee is not so sore
My ear is feeling better, not caught up behind, 'no more'!
Though my arms are weary and my strength is getting bad
I feel,today, somewhat cheerier and not so very sad
My searches on the internet for things to ease the strain
Have resulted in somewhat succesful purchases, again
I've found a little device that attaches to my phone
To make a landline 'bluetooth' ,now, I can phone and moan....
To my heart's content without my neck getting tired
Or me shouting down the speaker phone sounding like I'm 'wired'!
It's little things like this that stop me going 'barking'
People just don't understand, for explanations they keep asking
It's difficult to explain how awful it can be
Living with the progression of that disease called MND

Sunday, 8 May 2011

JUST ONE COLD AWAY .......................

After Steve passed away my other friend, Liam, whilst e-mailing his local wheelchair Dept, mentioned that several of us were going to meet up, but were unable to due to one of us getting a cold and then dying due to chest complications. Liam,  also, said that we were, as MND sufferers, only one cold away from death.  I felt that although this was very 'in your face'.  It was,' in a morbid kind of way' quite funny. I therefore coined the following little ditty:-

It may sound strange when I say
If you're ill keep your snot bugs at bay!
It only takes just one germ
To send us down to the worms
'Cos, with MND we're just one cold away..........

There is a serious side to this; MND sufferers really are very susceptible to chest problems in the latter stages of their disease. If you have any type of respiratory virus, be it cold, cough or similar, please keep away! (in the nicest possible way). Even though we can pick up a cold without realising it, there's no need to tempt fate.

Saturday, 7 May 2011


Today, was Steve G's funeral;.  it was a grand affair.
Standing room only and more outside, so many people were there
There were tributes aplenty for a great guy who was loved by many,  I know
One couldn't help but admire him , especially when his jokes were in full flow
After the service, his 'send-off' was at his golf club with friends
There was yet another tribute from a guy on whom he could always depend
It all made me wish that I'd known him long before this cruel disease
Of MND struck him down and dragged him, kicking and screaming, to his knees
Still if it wasn't for  his diagnosis.  I would never have met this guy
Who could make you laugh from his wheelchair, with just one wink of his eye!!!!

Goodbye and God bless Steve, you will forever be in my thoughts.  xxx

(P.S.just try to make the jokes that you tell Seve some of your cleaner ones)