Monday, 26 August 2013

,,,,,, AND NOW THE FULL SET ????

It seems to me that there are stages of MND when you need certain equipment,
It starts with a walking slick, if you have ALS as I do.
Eventually you require:... in no particular  order.......

  • a wheel chair
  • a hoist
  • A special bed
  • Help with cutting up food 
  • A spoon to eat
  • Someone to care for you.. this extends to help with even wiping your bottom !!!
  • Breathing help  .. NIV
  • Catheter
  • A collar
  • a peg
This seems to be the full kit for MND.
I have nearly all of these except the PEG.........  BUT....... I am going into hospital tomorrow to have an op on Wednesday , to have one fitted .. under full anaesthetic. 

So I will have full kit !  lucky me !!!

It is sad that this indicates  the march of MND. BUT It does progress, no matter how positive you try to be.

I have been diagnosed for 21 months now. and indeed started to limp 7 months before diagnosis. 
Does this mean the end is near??    I hope not. I have tried to have challenges along the way, The one I am busy with is getting the paintings ready for my October Exhibition.  It is to be called "PAINTINGS BY ONE OF THE 5000"

My next challenge is to plan my funeral..... watch this space....

But for now .. I'm due in Halifax at 4:00 tomorrow and my peg will be fitted on Wednesday..... Think of me...



  1. Hope your op went well. I do Beleive recovery is a while. Take care

  2. Hi Nikki, I hope you are recovering well from having your PEG fitted. Just wanted to say hello and remind you lots of people are thinking of you and wish you the best. Take care