Tuesday, 17 September 2013

Unfortunately this is Eliza and Christina (Nikki's daughters) here.

We are sad to let you know that our mum died, peacefully, on Sunday 8th September 2013 at about 8pm.

Eliza writes:

She did go for the PEG operation, which, in itself went well, but the got pneumonia again. The antibiotics cleared her chest, but her breathing became s difficult and she wasn't comfortable. After a week in hospital, she chose to go to the hospice.

During her three day stay, she was looked after and cared for by the hospice staff with such kindness I cannot thank them enough. Friends came and visited and Christina and I were by her side. She had already ripped off the breathing machine it was "driving me mad, the noise is driving me mad!!" (The medication and some oxygen allowed her to breath regularly). Her breathing slowed and as I held her hand she gently passed away in her sleep. I am so glad to have been there.

I don't know what else to write right now, I'm surprised I've managed to even do this. However,I know how much it meant to my mum that you followed her and her blog so I thought it only fair.

We may write here again after the funeral, which is to be held on Friday.

I know many of you were on twitter with Nikki, but if you do want to comment, please do so here, it would be a lovely way to 'end' this blog.

Eliza xxx

Christina writes:

Eliza has done so well to write what she has written above, but thought it nice to also comment myself too...

I'm sat here with a (large!) glass of red wine (my mum would be proud!!), trying to think of what to write.
I've never written on a blog before... Mum made it look so easy! She was so so proud of the 'hits' 'followers' and 'tweets' from the blog... I too read it every day!! So on her behalf, I would like to say a massive thank you to you for reading, following and tweeting!!

As you can tell from the title of the blog... My mum loved a hug. I will miss my mum's cuddles so very very much. We even named a 'hand holding post' at her bedside. Many friends and us held her hand that day. She would have felt very comforted I'm sure. I'm very proud that Eliza was holding her hand at the end, and that I was by her side.

Please perhaps think of our mum on Friday and say a prayer of peace for her.

Hugs Chrissie xxx

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................


Monday, 29 July 2013


What a day! Dr in the morning re my funny tummy (was sooo poorly yesterday!!) Then at 2:30, perfectly on time the ambulance arrived to take me to Hx to see the Neurologist. It was one of the new , expensive ambulances... that does not fit in my wheel chair... So I never did get to Neurologist and apparently the only one that will allow me to travel safely is very old and has the nick-name "Doris" !!!

So I do hope that Doris is available when I go to Leeds next Monday to see the breathing specialist... Breathing is getting a problem... well you just need to do it don't you !!

So as a PS, and as I have been asked several times, I will show you some of my work.


Friday, 26 July 2013


I try to go to see all the productions at Tod Hippodrome. Each one is excellent, I have never ever been disappointed . The musicals especially. are wonderful !

Well,.................. as those of you who have travelled/ are travelling, the ALS route will know... at first you can manage toilets. The next step is that , when out, you need to use a disabled toilet with those bars that come down... then you need to use one of those plastic seats that raise you up.

Well. if I went out with a friend, then,  she would help me up, so that was OK. But very often I went out by myself.. especially to the Hipp.
So ...., on a number of occasions I had to ask total strangers to help me off the toilet when at the Hipp. They were happy to help, but it was difficult for me on two accounts.. 1. There were no side bars and 2.And the helpers were unknown to me !

I spoke about this to a committee member and the side bars were put up, but sadly this was too late for me , as by now I was in a wheelchair and couldn't manage to get in the door.

BUT having highlighted this the Hipp have spent £29 K on developing a proper disabled toilet area. OK I cant use it but others will be able to.
In September the Disabled toilet area is to be offically opened.
There are to be two people cutting the ribbon,on the open day... Craig Whittaker our local MP and......................     ME !!!

Wow , how proud I  am ! I have never opened anything before and I am proud that having brought the need for appropriate toilets to the attention of the Hipp, they have responded... so lots of people will be able to visit the theatre in the knowledge that they are able to use a loo which will be appropriate, should they have needs.


Monday, 22 July 2013


My life has been hectic as usual but the main issue for me, has been re breathing.. I am having tremendous difficulties. It appears I should have been given more tests in Feb but this somehow didn't happen.

It has now reached what feels like a crisis for me. I'm struggling in the evening and terribly when going to bed as I can.t lay flat which causes difficulties with turning.

 I end up gasping and very distressed. My night carers are extremely kind and soothe me as best they can.... but they cant breathe for me. 

However I rang the appropriate consultant in Hx today and know that I am now being referred to Leeds as a matter of urgency. 

There  I expect to either be fitted with a mask, which forces air into you or (my preference) will take part in a new trial of a thing like a pace -maker which will stimulate the muscles around my  lungs. Of course I need to know more about this trial, it has been used on spinal patients for a year and is now being used on MND patients who, as yet, haven't had the mask thing, but need help/support with breathing.

 I really thought I was going to have a heart attack the other night my breathing was so so laboured for so so long... and... having a DNR in place, I got even more frightened as I'm not ready to go yet !!!

No,  not for ages!! There are too many too good bits and there will be even more once I can breath with less effort !!!.