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...


Thursday, 8 August 2013


Today I should have gone to Hx Hospital to see a Bowel consultant , (any detail would be too much information !). The appointment was to be at 2:00. Ambulance turns up.... and we find that not sufficient straps are on-board ! Great apologies , but the fact is I missed my appointment. I will have to get psyched up again !! Rats!!

NIV Update: Night one went well. YEA!!! Nights two and three went well with NIV but sleep utterly wrecked by pains in my legs  . The consequences of this were twofold: acute disappointment and extreme exhaustion. In fact after ambulance debacle I slept for 3 hrs in wheelchair.

WHEELCHAIR Update. I mentioned accident in new wheelchair , it happened last Friday. I expected an engineer on Tuesday but got a phone call to say man was on hols.... I cant wait for next week and his return ! I now realise how comfy the new chair is and how useful the riser.

EXHIBITION I went to Chris Nicol's exhibition last Friday. It was great. Lots of sensitive paintings and lots of friends to meet up with. BUT Boy , did I miss my Luca chair. I am so low down in this one and the riser on the Luca would have been wonderful to chat to people.

LEFT HAND  My left hand, weak for ages . now is causing me trouble with typing and indeed holding wine !!  Both disastrous.

So a little round up on what has been happening in my life..........


Tuesday, 6 August 2013


Yesterday, I went to St James Hospital, Jimmy's. I was to go to re breathing issues. I was much surprised when I found I was directed to the Sleep Clinic ! !!
My appointment was at 11:30 and the ambulance was due at 9:30.. it turned up at10:30 , and due to bad traffic we arrived an hour late !. The clinic was empty ! A nurse, passing through, munching on a sandwich said, are you here for the afternoon clinic ? !!!
The ambulance man, Stuart, explained why we were late and said my name. The department sprang into action and I was seen. (Apparently Leeds gives a priority to MND patients .)

So, if you've been this sort of clinic before,ie , if you have MND, you'll know what awaits. A chat with the Doc and then the nitty gritty of spirometry and the heated ear to ensure a good circulation, followed by the cut to gather blood which gets tested for O2 and Co2.

Whilst I was waiting for the cream on ear to work , about 5 mins I was told, I thought I would eat my sandwich. I put too much in my mouth and started to choke . I banged the horn on wheelchair and banged on my back, indicating I needed it banged. The receptionist, standing behind the counter said, Are you alright ? I, of course couldn't answer as I was choking. She didn't move. Are you alright ? she repeated . I still was choking. . She still stood still. I managed to regurgitate the food, as she , at last, began to move. I calmed, then ate tiny tiny mouthfuls till I had completed a quarter of a sandwich... all I ate for hours as I didn't get home till 6:00.

So results in. High O2 even during the day, but Co2 not climbing too high ( good one)... Over one third of the night shown to have STATS of less than 90%.  So results not good. Indeed I'm counted as too ill to get on the diaphragmatic pacing prog. Indeed it's  the reason I'm so so exhausted during the day has been that my O2 levels are so abnormally  low.

So... Off I go to meet Martin, in a small office, rather like a cupboard under some stairs.. It has shelves all round with boxes and every other one had protruding tubes. Like entering a cave of caged worms !!

But one of these boxes was for me ! A machine to help me breathe  at night. YEY !!!

We began the intro to this support... Why , why, why, do they always start with the lowest common denominator.. viz we began with do you know what your lungs do???   For goodness sake !!!

So , yes I was frightened, but I held the mask to my nose for the statutory 10 secs... we them were to progress to 20 secs and I did 5 mins ! There ended the intro and I was able to walk free ... well you know what i mean !!! Wheel free !!!!

Stuart, now , very anxious ,as his shift ended at 4:00, would now be very much over time... but he had had a relaxing day........

So at home, I had another go ... and then to bed....... I put this off through fear. But Sarah was with me and promised to check me frequently. I trust her. After two false starts when I pulled mask off , I settled down ... and slept ...

 BUT .... THE best bit was that when Sarah did  turn me,  I didn't loose my breath... amazing , after only a five hours of NIV, an amazing difference.

But, sadly, it is one more step along the road................