Wednesday, 28 November 2012


Once upon a time there was a Princess called Nikki. Sadly she had MND and was confined to a wheelchair.
But she was most fortunate in that a man, whose children she had taught many years ago, offered to transform a bungalow in which she could live (by paying some rent). Part of the plan was to make the kitchen accessible, so that she could cook and feed herself. He did such tremendous work.. the sink had no cupboards underneath so she could drive under and wash up. The oven was low and even had a special work surface so heavy items could be placed carefully and safely. The hob was really special, it went up and down. It was down for when Nikki cooked and up for when friends cooked for her. It operated by a switch. The switch had a sensor which stopped the hob going too low and the designers said it would automatically stop at the work surface height.

Nikki found this so helpful. She could cook from her wheel chair , stirring and checking each pot and pan.

Well this morning when Princess Nikki woke. She was so bright. She had had a wonderful night of perfect sleep.

9:30 she arose , made coffee, got cereal and waited for Princess Laura... her PA.

Back at her castle inTod, Princess Laura had awoken and found her carriage had a flat tyre... she had to organise the safety of her family getting to school , fix the carriage and arrived at Nikkis home at 10:45.

Nikki greeted her with happiness. Her first task was to shut the loft, as the wind had blown it slightly open. Whilst this happened Nikki entered the bathing room. BUT she heard an amazing Crash!! Shout!! and Plea for help from Princess Laura.

Fearing that the loft ladder had fallen on the Princess , Nikki , as quickly as is possible in a wheel chair (facing the toilet) .. turned and investigated.

What a sight met her eyes! the Princess L was standing covered in glistening glass.
The hob had been moved to the up position whilst she was making a cup of coffee for them both.. (the usual start to their time together). The hob had gone up, then up more... crashing into the glass backdrop to the splashback.

The Princess Laura was so shocked... glass had hit her  on her chest, and then she realised that had Princesss Nikki moved the Hob, then the glass would have hit her in the face.

Princess Nikki rang Lord R. He was shocked  and frightened at the disaster that could have happened... he rushed to the scene, leaving the home he was painting for a cook who serves a pop-group on tour. (Sadly not the Rolling Stones !).

Princess L swept and Princess N attended the bathroom.
The two princesses then sat with cups of coffee. Meanwhile an emotional Lord R surveyed the damage.. and podiatrist Sarah arrived. She made special wedges to try to keep Princess N's toes somewhat straight. She left with a hug and a promise of a trial of a special sock and of rubber bands that might be hooked over the toes to give them a stretch as the Princess N could not longer reach her toes to stretch them and they caused tremendous discomfort.


AHHH! Princess L exclaimed.. there is water seeping from the washing machine!! Lord R and Princess L investigated... it was found that the soap fill was blocked. They worked diligently..

Meanwhile the daughter of Princess Nikki, the princess Eliza rang.. Sadly there was no time to talk but they decided to chat later.

Simultaneously the physio M arrived, with a gift of a bed support... Princess Nikki has trouble turning in bed. Physio M fixed this on to the bed bed but was horrified that the bed was on casters... however Nikki ensured that the bed had never moved...
Well then she tried the new equipment and the bed shot across the floor. It was decided that there was a need for caster cups.. but as these were not provided by the health care people .Princess N would need to pay more golden coins... Princess N has few remaining coins but cant risk falling off the bed.

Princess N said farewell to physio M and  returned to the kitchen where she found Lord R on his knees. She enquired as to whether he was praying or thinking. His simple response was , the hob is about to fall off the wall.. Im holding it in place, a joiner is on his way.
A flash of problem solving... in her chariot N retrieved a stool which stood on it's end should support the hob, thus releasing Lord R... but it was 2" too short.... quick as a flash, she found a Bible.. the exact height required.
The hob supported, Lord R was free to phone Howdens who designed the kitchen and too complain and explain the disastrous happenings.

This episode was resolved by an agreement between Lord R, the joiner and a Howdens rep meeting chez the Princess at 8:30 in the morn.
BUT... At this time N would be getting prepared for a visit to Hx Hosp to talk with/to a CBT psycologist, C.... what a lot to talk about... she had thought the agenda might be about the end of life thoughts of herself... but she now realises nothing as trivial can be on the agenda... it might well be about life as the Princess finds it.

So the visitors left and G arrived.. It was good as N was soooo in need of a cup of tea, ( and actually a cigarette... but G cant cope with N smoking.. so she didnt!!)... G left and Princess L returned to check on washing machine........ They had a cigarette ! YEY!!!

5:20 N called her baby Princess Eliza who gave her permission to have an early G n T... Princess N normally waits till 6:00.... N was very grateful that her son in law A had prepared stew so she will be able to eat with micro wave...

The day is not yet over. Princess N had hoped to have calm, ie  prior to Thursday which she knows will be busy. She had hoped to paint... but had not managed to do this. She hopes for a peaceful day soon.... as she yearns to make pictures...


Tuesday, 27 November 2012


On my Blog yesterday, I included a piece of my favourite music... I hadn't realised the vid was from a home movie and was of poor quality. On my laptop I cant play clips prior to publishing... but when I checked back I found my error... so sorry. Here is a good version, not by the Welsh Choir as I had wanted, but the music is as good. And I love the pink ties!!!!

Tonight on BBC1 after the news on the program Imagine , there should be a program of interest. Its about the meaning of music to people. I shall be watching... and You ??

So wish I had got a ticket for the Stones concert ! I saw them at Sheffield about 5 yrs ago... AMAZING !!! 

One of my favourite Stones numbers is Hey You Get Off My Cloud..... It brings back happy memories of waking after a party with an aching right arm/shoulder having danced/sung   this number, endlessly !!!


Monday, 26 November 2012


My dear friend, cleaner, PA:    Laura, said on Monday... What music do you like Nikki? I admitted to having a small CD collection... but that all the music I had was special.

I also admitted to having not listened to music for nearly a year.

Why????     I thought. 

So I put on the cd that was located in my Bose.
I cried.
 I wept.
Music brings forward such emotion.. so many memories the Elbow performance at Glastonbury 2011.............
thoughts ....... will I make Glasto 2013 ?????????????
I so want to ....... 

So Music........ enjoy!
I shall from today.... It may make me cry....... but t's such a good way to let the pain go........ so........

This track isn't Elbow   It's Adeamus, "Draw Near"..... a bright , celebratory piece....... enjoy....... I feel so happy as I hear it, do enjoy too.

And my promise, to myself , to allow music back into my life..... and even if tears fall, that will be OK. Music is at the soul........ hope you are moved too.............



Words are tricky !

 I had a visit recently from a dear friend who though I didn't care/ was being standoffish as I had answered txts saying :No Im not OK to visit at the moment... I truly wasn't Ok..

I was waiting for medical visit or was so exhausted I simply couldn't see the friend.. no matter how much I wished to.

I apologised for seemingly being  unfriendly and somewhat ungrateful... but it is  hard... sometimes perhaps, I don't communicate well?

So today: I'm in the process of getting my Christmas cards printed... But wording   issues... I have to have 100 min order.. so therefore the card needs to be non date linked... thus may be used another year.

OK I can get over that. But my usual wording is something like, "Wishing you happiness, health and peace for the coming year "..........

But some of my cards will be sent to persons who may not have health next year, and they know that.
I don't wish to offend.

So I think I have settled on , "Love , Peace and Happiness".... what do you think ? Do message back.,,,,,,,,,,,,,,, AND


Sunday, 25 November 2012

15000 +

I looked at the Stats just now and see that I have had over 15000 readers. I hope that from you people maybe you have some comfort that people do cope , some  understanding or even laughs ,about MND.

And all that info makes it difficult to write what I had planned.
I've had an up and down day. I have a pain in my neck from simply not having my body properly supported in a chair... I've put Ibuprofen gel on it and taken paracetamol.... but it hasn't taken the ache away. I think a good sleep might do.

I started the day late, but then got on very positively, doing paperwork. All this stopped with two phone calls... a good chat with J, and then Liza rang and said she would be visiting the weekend after next... and with my dear little grandchildren. I had planned to decorate the Christmas tree on Dec 1st but will put it off for a week, and enjoy doing it with them.  YEY!! (note to self , buy chocolate decorations for them.)

After all this, it was time for a sandwich. As I ate it, I tuned into CH5 , a film.... A Christmas film.... I really mustn't watch these, I realise they are smultchie but none-the-less they do bring out emotion in me. I simply cried at some bits. Then tried to get a grip but depression descended... I was on the verge of ringing the Crisis team... and I don't know what helped me to turn the corner, but my head got out of the despondent state and I have coped.... not v strong, but not as low.

So:   My Music tonight is Snow Patrol, Light Up, Light Up  (Interesting video too).


Saturday, 24 November 2012


I really struggle with "Normality".

Part simply just craves normality. I don't have a "wish list", even though I know many terminally ill people do. ............... AND I sometimes feel as if I should have a wish-list............ BUT I simply can't seem to go there.

What I want, what I crave, is to be normal...... But I have to accept that my normal isn't now, what my normal used to be..

I used to be so very active, as a headteacher, a mum,a partner/lover,  a person who did voluntary work, a person who loved to go out, even at the end of a tiring week...........

But now : my normal is going out occasionally, (because I am generally so weak and exhausted), having friends visit, and asking them to put on my bed-side light , filling the kettle,......because these are difficult...(I have to balance)...... my normal is thinking, what care do I need ? and what can I afford...  (not enough!)

My normal is living with MND and knowing I'm getting weaker day by day, my normal is fighting this shit disease and trying to be normal.

And , for tonight, a Saturday night, my normal is XFactor, Pizza and red wine..... So that's normal, normal!!! YEY !!!!


Thursday, 22 November 2012


As I have said, many times before... I have amazin friends.... but theyall operate in their own way.

For example: K has said she will organise rota to be with me whilst I die,  K brought microwaveable slippers and bed socks as she knew I get get v cold feet, L has cooked a brill breakfast, E invites me to events and takes me, J has painted a portrait, G will shop and take me places, V meets me for lunch at Hosp and comes to appointments, B has been beside me when I have been sooo stressed, S has shortened curtains, K has put up paintings, L is an amazing PA doing so much, S brought me a cuppa in bed, E helped bake, E txts each day, ............people phone and visit....... and many many more pals , too many to mention,............. do so very much................

 But today H visited  and I asked him to load cups in dish-washer. From the pic below you will realise he hasn't ever done this before..... Bless for doing it H... I'm not  laughing at you, I value your friendship too much.... but you must admit these cups would never get clean............. and next time we'll simply have a cuppa and a chat!  OK ?

And I am so grateful and honoured.


Wednesday, 21 November 2012


Money, where does it go????

I've had a spending spree.. no, not on luxuries, not on Christmas presents... but on what I feel are necessities..

See what you think:

On Saturday:   £58      Under electric blanket..... I have been waking up with numb legs
                      £78      Thermal underwear..... I'm nearly always cold.. even with heating up high
                      £56      One-cup Hot water dispenser... lifting, filling, pouring kettle.. too difficult

Monday        £295      Another 10cm plinth to be added to toilet.. having difficulty getting off !

And why did I need to spend £487  ???

Why?, because I have MND.  MND makes you feel cold, (you aren't moving much), it makes you weak, with limited balance and very limited strength in my legs, getting off even  raised toilet is very difficult, especially if Im tired ( which I frequently am).

Not easy is it?...  So  that's another £487 off  possible treats !!!

Sorry to moan!!  So cheer up with Pink Floyd . YEY!!!!



Hi , I've been remiss in writing for the last week... I have been having a busy time ... my daughter Chrissie , Andy son in law and new baby grandson have been visiting.. and when Andy went back to the Midlands, his mum Steph joined us.

So I'm sure you understand I couldn't spare a moment to write... time with family is sooooo precious AND  a new baby,   well.... you just have to coo and cuddle whilst you can!!


Tuesday, 13 November 2012


So, yesterday, Monday... I was in tears.. no-where could I get comfy.

I had arranged for Barry to ride shotgun, and go to Hx with me to choose carpet and also to go to M&S for ready meals.

BUT when he arrived I was in tears as my w.chair was so uncomfortable...... Barry went home (we had decided that the trip was rather less important than getting comfy),   ie to get the right tools to adjust  chair.

W.chair services had done cushions and chair adjustments,  but you have to sit in chair for some while to see if all is OK.

I had had a miserable weekend re chair. I had to rub Ibuprofen cream into neck and take paracetamol to help with pain and strain. I was so upset, why can't I just have a seat that makes me comfortable.... surely so little to ask!!!

Anyway, Barry stayed and adjusted chair. When He left he said he could pop back at any time to re adjust... a real friend.

Barry also went to get prescription... I run out of Riluzole ( the one that extends my MND life by 5 to 7 mths) on Thurs... but though prescription  was supposed to have been written last Friday it wasn't.
He rang surgery this morn but they wouldn't say if there was a prescription ready, as he didn't know my dob!!!
I had further conversations and eventually prescription was promised to be  ready.... As I was at Hospice, Barry said he would collect.... BUT, yes, pharmacy didn't have all the drugs in stock, ( why am I not surprised) ......... so he will (kindly),  collect tomorrow.......

At the hospice I joined in the Blue Peter style art (!)... making a door wreath......... but I didn't choose typical red and green.. I got purple and pink.... will look good in my lounge!!!

I then had a session with the alternative therapist. YEY!!! I will get reflexology or a shoulder massage each week... YEY !!! sooooooooooooo welcome. I also will see Physio to do stretches.... another YEY!!!!

I came home and another friend, and her partner,  asked if they could pop up. YEY!!!! We had to drink black coffee till Tesco Man came !!!!... but then had a lovely GnT. YEY!!!
One of my friends massaged my feet and made sure I had warm socks on. WONDERFUL..... YEY!!!!

I am so lucky/ indeed blessed , to have such kind people around me.

MND seems to bring out he very best in so many people, I never knew that I was so loved, and I am so grateful, so amazed , at finding this out....... if I hadn't got this disease I would never have known.............. a definitive positive for MND ! (Can't believe I would ever say that, but it is so true!!!).


Monday, 12 November 2012


My neighbours Rebecca , Tom and Iris always used to share Iris' birthday cake with me...its become a tradition.... and one that has continued this year... even though I have moved.

Rebecca made the lovely cake and Tom did the icing... and Iris and I enjoyed eating it!!.. well we all did actually........... YEY!!!

How brilliant that our close friendship lasts... I'm sure it will for always.... Thankyou so much



A short video showing how I get washing to the utility room. My accent seems weird to me... !

Is it the camera recording system? hope so... didn't think I sounded like this!!!

Also every time I use my right hand to hold camera (not often) the sound goes down.... that must mean I'm covering the mic... will be aware next time.


Saturday, 10 November 2012


Barry kindly came with me, to wheelchair centre ,for cushion assessment, last week.

My problem seems to arise from the fact that I have long legs but a short body. The angle on the w.chair had been set to about 110degrees ... ie laid back. But with a lumbar cushion this was helped, but then shortened the length for my body (bum to knees).. so not perfect.  So we realised the chair might be better more, upright..., after WD40 application and Barry's wrench, the spindle was moved. I was more upright. But living with it for 24 hrs I realised that there was little flexibility in movement, ie of recline... I need to recline to be able to move my bum to a new position and thus do most to prevent pressure sores, ( essential), I also felt really good in one position but had to have slight tilt to enable this position.... thus transfer to toilet became difficult without much change.....

So......... I had to ring Barry today... don't like doing this as I know he is frequently free in the week , but treasures his weekends with my dear friend, his partner, Maria. So I never contact them at the weekend..... BUT needs must, as I was sooooooooooo uncomfortable. They were both able to pop in prior to ASDA shop, this afternoon.Believe me , I am so grateful.  I'm now back to more rested (prior) position.. ie about 110 degrees...... But even this is not perfect..... but much more flexible and relaxing for me.. though head not supported.............

I did have a donation request from MNDA... they recognise that wheelchairs are provided on a council approved list... and not from the best fit chair for each person. MNDA are trying to expand their service... to fit people with MND with the chairs that best fit their body shape and needs....

SO, and I haven't done this begging  before..... SO   if you wish to contribute to this fund ... ( a wheelchair costs £4000......... ) please do. Just Google MNDA and contact for the wheelchair fund.... maybe even mention me.......... Is that selfish ?????..... I cant decide...

But I do have to try every avenue to make my life comfortable...... Its soooo hard ........ believe me, walk (? ! ) in my wheel chair for a day and just see....... I'll sit in my, ( badly fitting, (again)) rise and recline chair for an hour, and you do some of the tasks I have to cope with........... So a very self-centred sentence, I know , But I'm feeling rather sorry for myself today......

these weepy days happen.

I have sat out side and watched the autumn sunset, it gets to me. It is like a metaphor for my life......... some brightness but diminishing warmth/ life.. should be lovely but just missing the mark.

I'm sad this weekend as Chrissie and family should have been here............. but as I have had a cold they didn't wish to subject baby Oli , 9wks, to my germs.......... Sad but understandable, I guess.

 I do hope they visit soon as I have only seen baby Oli twice... first time, day one, for an hour, second time in Oct, but he was soundly asleep in pram........ A new grandchild that I wont see grow up.... I need to make the most of this time to know him............ hope they can come soon............. but if all else fails they are coming for Christmas.... YEY!!!

So somewhat of a difficult and sad day today....... they happen............


Thursday, 8 November 2012


Is it the B cold that is making me feel so low? Is it the lack of sleep?  Is it straight depression? Is it simply MND?

Don't Know,.............. re any of the above...........

I've spent the last four.or is it five? , nights waking frequently....
It's then I think about my life, as I perceive  it is, ............... at the moment.

Today, I had to go a cushion assessment for wheelchair... for two pence I would have cancelled. Believe me it takes such effort to simply shower and dress, let alone get in car and drive to Hx.... even though my friend Barry was able to accompany me , (Thankyou)..........

So tremendous effort required... BUT, I did it...............

But should I simply do what I want to do ? Or what I feel safe doing ? ie stay at home and perhaps  paint... ?

I know I could just stay in, get on-line everything... but this isn't living.. is it  ? It isnt making the effort, being 100%+ strong.. as I feel I must be, ie if I am to continue to be me.

I have so many friends who understand, who visit, who keep in contact via phone or Facebook..Thankyou, you know who who you are.

....I will decline... and though  I shall fight this (providing no more colds!!), it takes effort, such effort...

 but Carpe Diem


Tuesday, 6 November 2012


As a teacher I had almost a permanent cold for the first few years of work. After that... Nothing...never!

So it has been a real shock to have a real streaming cold. My nose literally drips at night. I haven't slept through for two nights... Well actually I've woken every hour! Unusual and very very exhausting! I look like Rudolf !

So , when I woke this morn at 7:45  ready to get ready for hospice day , I thought not only do I feel rough, but actually , the people at the day centre are very fragile.... More so than me... So I rang Calderdale transport to cancel my visit. They kindly contacted Overgate..

But I do feel guilty as out of 5 weeks I have only attended two... And they are giving me practical help with a social worker,  re care help, and with talking about end of life decisions....

 No decisions yet made though... But it's an area I need to explore.

Free day. Everyone thinking I was not at home wouldn't contact me.... So I painted...

 Then after making veg soup for lunch, I went for a lay down. Woke 3 hrs later.. Felt much better .

Have painted this evening also.

I'm working on a portrait of dearest Meggie. In many ways I wish I had never started this , as its difficult to make fine lines, and after working on it I feel I have produced a painting of a cat, but I don't feel it's Meggie.

 I include the canvas as it is on my easel right now...... But I expect it will be changed... Especially the background... Not at all pleased with it yet.


Monday, 5 November 2012


Yes the title says it all!   I drove to Halifax, all by myself and parked (with only a little difficulty ) , at the Hospital.

Val and I had a simple lunch at the canteen and a very good natter!!

We then went to Neurology. I needed the loo.. ( sorry, but toilets become an obsession when you are in a wheelchair!!)... I felt the seat may not be high enough and that I would need help to get off. I asked a nurse. She said that they would not be able to help... I then asked what would happen if I pulled the orange cord... Apparently they would find a hoist...!
Well what did happen was my friend Val helped lift me... a big thankyou Val.

Dr Mahmood was in his usual friendly, fine, form. We talked about my curled-under toes ( which impede getting off a toilet) and Botox was suggested.... but on checking, apparently not only the muscles of my toes would relax but other muscles.... not a good idea... so curled under toes I have still.( and RATS that makes my eye lines impossible to remove either!!! ).
 Podiatry may have an answer, I'll contact them.
The result of the 24 hr heart monitor a few erratic rhythms were seen, so I'm off to a cariologist too.
My hands are weaker.. But I knew that.

As I left Halifax I noticed the blinding sun and the red/orange sky.

This sunset was so beautiful I decided to drive up to Oxenhope Moor to look at the view and contemplate things. I parked on the edge, (the very edge)  of the bus turning circle... well out of the way, ........ I thought. But the two bus drivers who turned ( easily), didn't appreciate my presence.

To them I say, just walk in my shoes for a day, see if you would then begrudge me taking in a wonderful view !  But I guess they didn't realise my situation... but actually, even as a normal non MND person, I wasn't in the way... a little courtesy does no harm... in fact, good manners make the world a better place.

Sunday, 4 November 2012


Today I collected my paintings, which had been in the Tod Open Art Exhibition this weekend... No sales , sadly, so not a victory... but in another way a victory as I was doing a very "normal" thing.

Since last weekend I have been trying to drive my car each day. Whilst Liza was here I didn't  but every-other day, yes. So Im getting the hang of this. Im confident with the braking system, but turning round a corner whilst trying to accelerate, is very hard... but getting better. 
BUT I have found that I need another accessory ... there is no exit light when you leave via the rear of the van ( as I do ). So now I have a torch which I hold in my teeth! I am buying a head light,( like pot-holers wear) after I complete this Blog!!!  Remember that I also have to carry in a grabber, as if I drop keys, as I have, there is no way of picking them up.... so two accessories I bet Fiat never even thought of!!!

Last victory, after realising I have millions of eggs, I made a quiche .... not easy from a w.chair! And it wouldn't get a second look in the Great British Bake-off... But I am proud... and it tasted good too.


Friday, 2 November 2012


Hi, dear readers

.. have had a busy week since I last Blogged.. sorry if you were waiting for the next thrilling instalment of my life with MND !  But now, here it is.... YEY!!!

Last week-end was so miserable re weather.. and I was heartened that so many friends bothered to contact me, either offering to visit, or simply for a chat as the days were sooo dire.

CAR: 1.I went for a drive with Laura, to get Liver function blood-test done.    2. I drove to the dump to get rid of cardboard.          3.I drove to Tod and met Tom who filled fuel tank... Achievement!!

On Sunday Liza arrived , with my grandchildren, Caterina and Matteo... YEY!! BIG YEY!!!!

Monday, we took a Taxi to Hebden Bridge. Liza could see for herself how difficult this operation was. Getting back into Taxi (Valley Taxi) a prob occurred with kerb, and I said , Do take care. The lovely driver said, You are my mother... what a great kind comment.

We had fish and chips at AJ's . (they will cook in oil). I knew there was a ramp at entrance, but didn't account for the block of wood on door entry. I got in but it did freak me out!
Back home, Matteo had a sleep, and us girls made a Jack-O-Lantern.  Caterina and I devised a song.. " You cant cut a pumpkin in a wheel chair on your knee... "...........................  Sorry no melody here but a great song !!!!!!

Tuesday, Liza took chn to play-park... It poured, 3 mins after they left the house. !!  Then Liza and I spent 5 hrs baking sponge cakes to make the cake for Franks birthday... 8 made but 7 survived.. My hands got weak and smashed one!!!

Liza and chn left on Wed.

So pleased Laura  was coming in to clean..

I was so sad, but it was a great visit.

So these were a few of my favourite things .................


But then , on Thursday... no planned visitors.. only nails to be done in Tod late afternoon.....

so emptiness struck me.... as I woke up.............

The silence of my house, the silence of my life. The sheer emptiness of my life without dear Meggie.

I have wonderful friends, wonderful support... but actually , I really do feel as if I am existing, not living......... I should shake myself as my friends could not do more for me.........

 I simply cant tell you how much I miss the living presence of my beloved Meggie.
The silence in this house each morning without her, is deafening.