Tuesday, 31 July 2012


Today I spent one and a half hour working with my physio and OT, trying different methods of getting off the floor. The was exhausting.

So exhausting, that I then spent another three hours in bed getting over the exhaustion!

That's another 4 1/2 hrs of my life gone.... what a waste!
 But a necessary skill as I have ended up on the floor several times recently and had to call for help.


Monday, 30 July 2012


I'm using the royal "We" here, standing for those of us with MND, especially those of us who live alone.. If this isn't you, I'm so glad.....BUT it is me.

First Adjustment:This morning my first call was to my OT. I have found that I can no longer get off my downstairs toilet. I have bars to hoick myself up, and a frame, but what I could manage two days ago, is no longer possible. So the call was to ask for the seat extension that I have upstairs. Hopefully this will come with her visit tomorrow. As of today, I have to plan loo visits  to have enough time to get there via stair lift. And we all know how slow they can be! So planning esential, none of this last minute rushing, the lift takes ages then I have to hold on to walls to get to bathroom... No upstairs wheelchair.  But hopefully a special seat will sort tomorrow.

Next adjustment of the day. I have been able to sit on stool to dry my hair in front of dressing table. Yesterday I couldn't get up in my usual fashion, ie using the dressing table as leverage. So I got on floor , (silly me!) , crawled to bed thinking I will manage to pull myself up. But no. Thankfully Eliza was here. She had to place my left leg at right angles to the floor, then support me from the waist whilst I used all my energy to flop onto my bed.. We got there!!!!
Today having washed hair, I decided to leave it to dry without its usual blow-dry. Not a good look. Rebecca visited and has fixed a mirror and my hair dryer by my bed. So no more bad hair days!!! Yey!

The adjustment  re cooking: I love roast dinners... And quite honestly am getting sick to death of microwaved meals. So this evening  for dinner I'm planning pork chops, stuffing, mashed potato  ( a concession, found in fridge from M& S), with gravy and frozen veg.
So at 5:00 I chopped onion to add to stuffing mix... Good tip, it tastes rather better .... But to chop I have to wedge myself against work top.. This takes a lot of energy. Undaunted I fill kettle with water. Very difficult to lift from sink to socket but achieved! Yey! Kettle boils . Now to lift again. Its so so heavy I splurge too much water in, never-mind, add more stuffing mix. It spills! Remember, all this time I'm standing only because I'm taking most of my weight pushed against the work top. So now I have stuffing ready. But have to clear mess. Some on floor. No hope of clearing up! And cleaner doesnt come agin till friday.. At this rate I'll have mice!! Thank goodness its 5:57  so 3 mins early I allow myself a drink! The rest of the meal will be cooked when I've rested!

6:00 News now! See how the rest of the world is coping.

I expect ill eat my dinner about 8:00, not too long to wait! But pre ALS,  it would have been sorted and I could plan to eat when I wished, and not just when my energy levels allowed me to complete cooking. RATS!!!

Still it will be worth the wait!


Sunday, 29 July 2012


My eldest daughter Eliza came to help this weekend .we got loads of clearing done, just some art equipment left in the attic.
Liza brought down boxes and we went through them.
We were so happy when we found really special things that we knew we wanted to keep.
For Chrissie we found her"Ellie's".chrissie had a pink Ellie which she loved so much, and which got so mucky, I had to make her a new Ellie.

My thoughts were that they would each take it in turns to be loved. Oh no! She then had two, one under each arm! Chrissie also has a numnie... A dummy to the rest of the world! I always got orange ones from Boots...thinking that we wouldn't try to hide the fact she had a numnie!
In one of the treasure boxes a numnie was found, but now it has been thrown away...the rubber had completely perished! Ahhh, end of the numnies, but Ellies still live on.

For Eliza we found many things as she is like me ,and loves treasures...BUT-we did find a special tape. It's of dad playing the organ, then Chrissie reciting nursery rhymes and finally Eliza talking about what she had for Christmas.

What treasures.There were loads of press cuttings of dads performances and photos and even his BBC 1934 diary , with recording times indicated.

Chrissie and Andy were up the weekend before and some boxes were cleared then too.
Sadly, we didn't have time to read everything, so I suggested to Liza that when I'm more disabled, we'll get down a box and go through it all properly. That will be such a great thing to do when I'm less able to get out and about.

One sadness. My thoughts went towards my own mum as my girls were helping me.

I can remember that when I visited, mum used to ask me to tidy up her eyebrows. Now every woman knows how irritating it can be if you want to have tidy brows and have to wait. I now have mine done every 3-5 weeks. But know beauty salons exist to help.
Years ago in the Forest of Dean ,there were no such places. You had your weekly wash and set, loads of lacquer and at was it.
SO I can remember mum asking me to help with this simple task... And very rarely did I fit it in... I can remember saying, I'll do it next time...that would be 2-3months hence. (we lived a long way away).
But how unwittingly cruel I was. I feel so sorry for that now. If only we could go back...

So I am doubly grateful to my daughters and to all the other people who help me. I couln't really manage without you.

The fact that I do have so much help allows me to fight this terrible disease. I want to be with you all for as long as possible.


Thursday, 26 July 2012


Between 1:00 and 2:00 I had two big expenses..

Firstly the car. It appears that had I had all the adaptations done prior to accepting the car, I would have had help and discounted rates for the adaptations. I wasn't told this. As it is now I have to pay the total. I found out the prices £1063 for the lock down, £1880 for the wheel insert accelerator... 
I emailed David who has been brokering this for me... he has suggested getting a second wheelchair which will more easily go into the van using a simple lock down. This could be a less expensive option, especially if I could find a second hand one... but how on earth do I explain to the NHS that the special chair that they have provided me with is not of any use in the car, and I'm now using my own... However I will use the special chair indoors.. its special because it tilts and thus takes pressure off my back, so it is necessary.
Watch this space.

Whilst all these conversations were going on, Bosch man arrived. His visit £89 . He found that the compressor has gone in Fridge Freezer. New compressor  £463!  But not advised , a new fridge freezer advised. 

So this afternoon I viewed endless f f's on line, but as it is part of a fitted kitchen then I need a person to check measurements and fit the FF... I might have sorted this, might! But even so this will be a min of £325 incl fitting plus the £89 already paid.!!

Why cant anything be simple!!

Once again, if I wasn't so exhausted by all this, I would weep... too tired to weep!!!


Wednesday, 25 July 2012


Today was a busy day.. Rebecca came to move push zimmer into car, as she arrived  early she managed to empty dishwasher , load dishwasher and fold and put away washing. So a great start. Thankyou Rebecca and Iris. 
Without a cleaner ( she's on holiday) this week, it has been difficult.. and also managing without a fridge/freezer.. sadly, I've got behind in tidiness, as to tidy takes so much energy. Help from good friends is  invaluable.

Last evening I went out, and was so grateful for lifts, but when you cant move yourself  in a push wheel-chair, you  can feel quite disadvantaged and quite  vulnerable, you cant move yourself to be sociable.

 I seem to get the feeling that others don't know how to approach us, ie the us with MND. But my view on this is, that we,who have MND, and are trying to cope ,....................... please people do give us your support. We are just normal people who have a shit illness!

Anyway all my difficulties  were due to end today.. I was supposed to get wheel chair, then take it on to Brookes Miller at Elland to be measured, to have lock-down fitted. This would have meant that I would be independent and free in so many ways and would collect car on Friday... 

Yes, I would need help to charge chair, and to get me from back to front of home. But I did realise I could get neighbours to give me a lift .......or even ring a taxi to do the move. £3 would be a small price to pay for the freedom I would have...

So after a visit to Misty Morn, to check on paint colours, I drove to Wheelchair services in Halifax. 

We did tests and found that when I reversed the wheels caught the foot rests and scraped my ankles. Realising that if the chair was tilted then this problem was solved. Then on to kerb climbing! Wow how terrifying is this. You have to approach kerb with speed and keep going. if you don't keep up speed then you get stuck! To get off curb you have to approach backwards . Haven't got the vocab to describe this hanging and bumping  in mid air!! Believe me I shall avoid kerbs wherever possible. Heaven help any person who parks in front of a dropped curb from now on ... they will so get the edge of my tongue!! 

Unless you have these challenges to face you simply don't know how hard they are. 
Olympic games , we all deserve gold medals!!

So, with new shiny wheel chair in back of green van, I set off for Elland. Getting used to controls now... feeling good.. freedom is nigh!!

Get to garage dept. Having looked at car and chair, there was much shaking of heads. The lock down will need to be special as the height of the chair is slim, any low lock down will scrape getting into van and also will scrape on any rough surface.. even including door bars between rooms.... so no use... The appropriate lock-down will cost £1000. 
I had been given to understand that whatever lock down I needed would be free from Motability. I believe I have been mislead.

SO... not only do I not have planned freedom this Friday.. a weekend of fun with Lisa, the ability to go Chrissies Baby shower ( which she has planned with a place on mind with ramps and disabled toilets). but also I still can't even  get into doctors, cant go round shops without a pusher...etc etc  .... and at the end this it  could all cost £1000. 

£1000 in other terms would be 60-70 hours of a carer.

Waiting another month could be 1/24 th of my life..  It has been 3 months, .........1/8 th of my life waiting for wheel chair, and  since DLA award  in Jan, (when I could have had a car, but have waited to get the right one), it's been a possible 1/4 of my life...
( these fractions worked out on MNDA expectation of life of 2 years..even if its 3 yrs or longer. it is doubtful that I will manage to drive round, and not need considerable help after 2 years.)

Dramatic these effects....
Most importantly it's the mental effect not being free,the mental effect of having had to wait , patiently, for the wheel chair, and yet to find that I still can't use it...

This is so, so , terrible... much more than cant imagine. 

I want to use, live my life for as long as I have. 

If I were rich, so many of these problems wouldn't exist... but I'm not.... where is the morality in this.... I've been an honest, diligent worker all my life.  
I don't mean to be greedy, and I do realise that there are many others in need, but get a grip government, this is simply not good enough...



The major challenge this week has been to have milk that's not"off",and to keep my meds cool... The fridge freezer is defiantly caput!

Bosch man will come on Thursday. If its fixed, the Tesco man will come to restock fridge, have had to dump everything! Ho hum!!

Today I was measured for rise and recline chair. It has 6 buttons, thus multiple options. Eventually I can get comfy!

But whem i find it's time to choose fabric. I discover that as the cushion in the seat has to be special , to avoid pressure sores , it will be black or navy.. Well hope it's black as I have chosen a grey fabric..

Aesthetics don't seem to enter into some of these things.And I don't understand.

Don't fret, I'm grateful for the chair that will support me.. But why the hell can't it be in a decent fabric... Rats!!

This evening I have been out to a Samaritan meal, celebrating 25 yrs of SAMs in was lovely to see so many friends, but i was surprised by the response of some. It seemed some people stayed away, perhaps they can't deal with my illness. But I deal with it, so they shouldn't worry about chatting to me.

When I have my proper w.chair this won't be a problem. As it is , I'm put in a place and am not able to circulate, as I said , when I can circulate then any tension will be released.

So, tomorrow is a RED. letter day. The day I've been waiting for for over 2 months.. I get the outdoor/ indoor wheelchair! Yey!

I am to go to wheelchair services at 2:30 to do another road test...which I will pass. Then the chair will be loaded in green van, and I'll take it to Brooke's Miller at Elland. There they will do the measurements for lock down.

Now there comes a problem: i have been told I don't leave car, but I can't see how the work will be done if I don't.... So if I do have to leave it, then I beg a lift off a n other at the garage or I pay for a taxi! What the hell!

Then on Friday I go to Elland to get car with w.chair fitted. Ill then be using the w.chair as the driving seat.

Liza arrives at about 6. We are supposed to start packing , but I so want to enjoy the freedom of being mobile, that may come first!!

There are probs re charging chair and getting from back to front to get in house... But these are not impossible hurdles..when I've sorted it all out I'll write about it....

But for now it's bedtime. I'm shattered but so excited about the step nearer to some freedom that I will take tomorrow

...having looked at the last sentence perhaps the word step was not the best one to use (well if your legs don't work you don't take many steps!!). But you all know what I mean.


Sunday, 22 July 2012


After a great weekend with Chrissie and Andy..they helped with so many jobs and took me out shopping... They left...and I went into the garden to enjoy the sunshine

I found, for the first time I couldn't get out of the patio chair.Fortunately Steve was in his garden and helped me up. Thankyou.

My fridge freezer has stopped working, having signed up to a service which answers problems, it was suggested I turn off for 6 hrs. SO I decided to turn on fridge after 8 hrs... Then I simply couldn't get off floor. I tried using w.chair as support, I trid using rise and recline chair to lift me. . After nearly 30 mins of trying I thought I had two choices.... Press button and get help via fall detector people or ring neighbours Rebecca and Tom. I decided on the latter , as if they did answer , then they were closer and quicker... Thank goodness they answered and Tom helped me off floor...Rebecca stayed a while till I was calm. Thankyou.

so I realise there is progress... A week ago I would have been able to have got up from floor with the help of higher chair to crawl to. BUT This is no longer a possibility... RATS! This is such a rotten disease ......


Saturday, 21 July 2012


Last evening Chrissie and Andy arrived,? We made a plan for today. The pivotal point being a visit to Misty Morn at 1:30. So lists were made, timings written down!!

The morning started with coffee and croissants...Yey!L

Whilst I washed and dressed ,C&A emptied freezer to defrost, set time/date on car, got on flat roof to clear gutter.

Then strangely, perhaps because I felt so safe and not being challenged, I had a lie-down for 30 mins.Such peace.

Lunch, ham salad sandwiches.. Rebecca Tom and iris popped in whilst we ate in garden.

Off to Old Town. WOW,! What a difference a week makes!! Non slip floor in wet room?..looking good. Kitchen as last week, as installer watching Tour de France! In

Then on to hx where C&A took turns pushing me! Wow do they need practise!!
BUT, it was so great to get into M&S and take back clothes ordered in error. AND get some new jeans. Andy was so kind and just stopped where ever I wished, how very very kind!
I also had a £5 voucher for M&S food... So stocked up with ready meals! Yey! How helpful this wil be.

We then went on to Next and I bought baby (minus 7 weeks), a dear little hat, with stars on! Yey!

Home and Andy accompanied me , in green van, to fill up with diesel . The first time. Little worried as it only took £35 worth and the empty light was on. I guess it has a v small tank, but there are therefore issues for when travelling down the motorway... To be discussed at a later date!

So, cuppa, eclair...bliss.

Andy cooked chicken stir-fry. Lovely. Glass of white wine.

WOW , this has been such a lovely day, no stress, helpful loving family.... No one could ask for more. I had no challenges as I knew they were here to take the stress away. Consequently I feel happy and so so refreshed, if only every day could be like this.




But what is normal, and what is my normal?


  • the condition of being normal; the state of being usual, typical, or expected:


    • 1conforming to a standard; usual, typical, or expected:

      So here is a day in my " normal" life.

      Wake... have aches on hips as I don't/can't naturally turn in my sleep.

      Feet out... backs of legs stiff. Put on foot-up on left foot as it drags and I may well trip without it... but I need the loo...  Might be a thought to go backwards and do a  Michael Jackson "Moon walk" !

      Get to the bathroom. Sit on toilet which now has extension to get it at an appropriate height, with bars to help me off....

      Then a big  decision, do I go downstairs or do I wash my face, clean teeth and go down. My pride makes me do the latter... but my legs are so weak, I have to lean into the basin to allow myself to balance.

      Stair-lift down... takes ages!!! but couldn't manage without it.

      Into wheel chair.

      So, Meggie needs feeding. I have to use special hand-helper to pick up her bowls. Fill tuna in one. The dried food spills as I try to fill from the height of the w.chair... mess on floor, can do sod all!   Water next, a big prob, fill ok without too much stretch but it always spills! She hates getting her paws wet..... poor Meggie, so much for her to adapt to. She copes even though she is 15... So loyal and loving........... 

      So my breakfast.. well it starts with a coffee and a cigarette.. not good , but what the hell!!! ..... Lifting the  kettle is shattering...... but I stagger and manage....  Sometimes I'm really hungry and would like beans on toast or an egg...... but I never have the energy, yes, never!! to make such a feast!!!   so its cereal... easy! But not what I feel I need!

      Then a decision... do I have a planned visitor , like today,or shower... both exhausting... .  but visit a good thing... so I'm still in pj's probably, but usually decide it's better to interact than to be showered and alone.

      ( You see, showering is a problem.It takes 40 mins to get undressed an in. Then you soap yourself, which means, if you don't get all the soap off you are slithery getting off the bath seat............. Anyway, assume I'm off seat, Ok. I have to get on cotton robe......... easier than using towel. BUT I cant get bath mats off floor without a risk of fall...... if I lean over I am so unbalanced that I fall.... so bath mats stay on floor in an untidy heap.......... not good if you are trying to sell your home.)

      So, after this effort, I may have washing to take in or out of machine. Lifting and moving is difficult. I need to have a third place to support me.......... 
      OR it may be that I have to put stuff in dishwasher, or take out........ the angle of the w chair to dishwasher door is hard to manage....... either exercise takes ages....... probably 30 mins at least........

      Lunch-time is easy as possible, and though I may be hungry at 1 ,it could be 2 before I actually manage to get a snack or even 3 a snack with protein, ie as opposed to toast. I feel need proper protein but find it difficult to do meals with enough. M&S ready meals are good. (No other supplier does meals without yeast extract, which I may not have.... )  But how do I get to M&S?  Yes, I can now drive there, but my legs are too weak to get inside door. So I depend on others. Eliza has brought a few meals and so has Andy, they will keep me going............. but it's hard..............

      So it's afternoon. I've got thus far in my day...... but I haven't mentioned the calls and emails  I have to make to try to get my life on-line............ the car, the wheelchair, both outstanding issues. Also mail and email re sale of house and equity release of house, choices in new home, care assessments.... ( sod all  finance, ............eventually....... I will be paying for it all!  Well , until I need feeding, then it will be an NHS prob and free , YEY!!......   SHIT!!!)    ........ also....   chats with friends ......... and all the time trying to present as a positive woman......... Not acting, but because, for the most part, I really am coping and , indeed am positive.

      BUT  It's bloody hard.

      So now , we're at tea time..... have I defrosted anything to eat??  Usually  yes........ great............Then, at 6, no earlier ,I allow myself a first drink, could have liked a G&T earlier but don't brake this rule. 
      On two occasions this last week friends have been going to come round.............. I have had to cancel,........ not because I don't want the company and help that they offer, but because I'm to bloody tired to cope!  I'm too cold to move. I'm aching all over as no seat is comfortable and I feel such a slug in a chair. So ugly and so useless, and yet I know I have done as much as I can do. 
       MND has exhausted me and filled my day, even though I try to be "normal".

      I go to bed, eventually. Though tired, exhausted beyond belief, I find it hard to go to bed. When I get there, TV helps.... it lulls me , and I often end up waking about 4 and turning it off, only to turn it on again an hour later. 
      Dearest Meggie sleeps on the bottom of the bed whilst I sleep.As I said earlier, Im generally  in one position and wake aching; or don't get much sleep because the fasciculation on my thighs they are so intense that even the bedclothes jump!   BUT, sadly,  I know that this is a sign of the progression......... it's frightening..............

      Such a few things will help my life., as of today...........
      1. The wheel chair in the car
      2. The move to the bungalow
      3. Being able to produce good meals, hopefully in adapted kitchen, but I fear I will need carer to do this as I have so little energy.
      4,. Some sunshine, England, please ,  bring it on!! (To my shame  I'm so jealous of all of my friends popping off on holiday, wish I didn't feel this way...disgusted that I feel this way!)

      PS I'm not looking here for sympathy, I hope today's Blog doesn't read in this way. I simply wished to express what a day with MND is like for me. It's 8 mths since diagnosis, but actually 14mths since I started to limp, and that is the date Prof Shaw goes from..... so......... if most people with MND live 2 to 3 yrs........?????

      Well, who can blame me if I moan on occasion?, If I'm frightened? If I crave energy? If I so want to be able to enjoy freedom whilst I may be able to savour it.......... ???

      It's hard , really hard ,living with MND and having a positive day, but I do so try........... 
      I really feel that positive thinking will benefit me, in the end........

      So, Please........

      HUG ME, I'VE GOT MND    

      (To date I have had 8082 views of my Blog.......... I hope that those of you who view here today, will just have a glimpse of how hard it is to live with MND.. thankyou for reading this............)

Saturday, 14 July 2012


This morning I sprayed on my perfume as usual, and it landed in my eye!!!!  OUCH!!! 

Then I remembered getting quite impatient with my mum, many years ago, for doing exactly the same thing. She actually was loosing her vision. I have no such excuse! I don't even have the MND excuse! It's nothing to do with that, simply careless. So, sorry Mum , for being impatient. You really did have a problem seeing where the spray came out.

As for me, it would be all too easy to blame everything that goes wrong on MND. But , in all honesty, that isn't the case........
In life we have troubles, many of us. But its simply not fair to hang every issue on that peg. Personal responsibility is important... you can't blame everything on one fault, sometimes people can just be plain careless.. that's OK, that's human.....
and , d'you know what, when you're ill with MND, is simply great to be just human!!


Friday, 13 July 2012


My dear cat, Meggie ,has been fine with the stair lift from the word go. I did wonder how she might react to the wheelchair though. Well she has until today always turned tail and run. I have found this stressful as she really needs to get used to the way her mum now moves around. BUT, Today  RESULT.... Meg sat on my lap, I was in wheelchair, and I tentatively move it, a few yards at a time. She sat on my lap from the dinning room to the kitchen! YEA!!! Result! But then when she moved from my lap she ran away... so more confidence building needed... But we have lots of time to do it. 
Well done Brave Meggie, you are a superstar!!

As for the rest of the day.. well the bags ordered from the supplier arrived promptly I've had an order for 4 but the rest of my stock is in store.. so pleased I can complete the order. 

Tesco man came on time. We may have lots to say against Tesco , but they are a lifeline for me and all the guys who bring in the goods are kind and put stuff exactly where I wish it to be.

Watched "24hrs in A&E", last night. A lady who had cancer was close to death. Her family surrounded her. The lady said," I'm going". Her children said ," No, you're not going anywhere". I found this hard to listen too. I realise the family were actually saying , We don't want you to go.  BUT for the person near death might it be kinder for the family to give in and simply say something like, "Yes, it may be soon, but we're here, and we love you. We don't want to say goodbye, but realise its inevitable. We love you we give you our love and  hugs always. "

I've been referred to the hospice, Overgate, in Elland. I'm number five on the list. What they do, initially,  is to see you, to understand your needs. For me .this will be day-care. I will beable to go there, have a meal, a bath, massage and more importatly talk about preparing for my death and for my wishes surrounding this. This will include how I wish to die, what interventinions I wish , or don't wish.. 
I think the hospice is the place to die ,as ,as far as I understand, family and friends are well supported. As my girls have partners, but a dad who doesn't communicate with me, I feel I must make provision for them all to be supported... like having another parent. At least I hope that's how it will be for them. Who knows... I hope this will all be a long time hence, but I will be happy if I. and they , are prepared.


Thursday, 12 July 2012


Some-days I get out of bed and I just know, and I know I do know , but I just know, that I've got MND.
This morning was like that.. I knew, I just knew I had it.. every bit of me was still exhausted even after over 9 hours sleep, I was stiff and my head ached. 
Sadly for NHS funds, I had to cancel my appointment at the breathing clinic. I knew I would simply be unable to drive to Hx , undergo the huffing and puffing tests and drive home. This then makes me feel morally weak, and underlines my physical weakness.
MND is simply horrid some days!!


Tuesday, 10 July 2012


As you are now reading this, you will see I have made three contributions today... I must be in writing mode, you may think... but no,  thats not it...

I simply cant write every day because very often I am far too tired. I have mentioned the compete exhaustion you feel with MND,................
.................. and actually, it's often  likely that I'm feeling low. I write sometimes about the difficulties I face, but how boring would this be if it was only one long long rant.
...................And true to say I actually don't want to rant all the time. and I don't rant all the time either.
 I  feel/ hope, I'm quite accepting and am living with  this illness. It is my thought/ belief, that to rant, to lack positivity, to moan endlessly, would do me or others around me no good at all!

BUT  I do admit that I do use the word beginning with S... . quite often!  For example when I drop something,( its so hard to pick things off the floor without falling,),  when I spill the water I'm carrying to change Meggies bowl, etc...... there's a link here, isn't there? Its about dropping things and not being flexible... so I'll use another of my favourite expletives,  RATS!!! But that's how it is...



Saturday was a busy and somewhat challenging day. I planned to drive my green van to my friends home. When it came time to leave Thorn Place, I realised that I had no-one to see me down the steps! Whilst I can get myself down the steps by myself ,it would take tremendous courage, but I would be prepared to do it... BUT I can't lock the door myself. The angle and height of the lock mean that it is totally impossible for me to do this. I rang neighbours , but no-one was answering. I then thought of shouting to the  children playing in the street, when I saw a friend going down the road... I shouted to her. She,Esther, came an helped and thus I could get away only a bit later than expected.
So I drove to Pecket Well, collected Elsa and we went off to PCX to collect my new computer... I'm writing on it now!! We drove via the bungalow to see if anything was happening... no changes viewable from the outside.(BUT I gather plenty going on inside). On through Midgley, down narrow roads, I was preying that I didn't meet up with any other cars and have to reverse! None met!!
After PCX we had to turn round so chose to go through Dean Clough, where we saw the new Totally Locally cafe/shop. We ventured in. Actually it didn't officially open till yesterday ,but we had a great cup of coffee and a good chat with the people working there. I looks like a wonderful place to have a snack. There is a disabled toilet but the chairs have no arms, so you might need to stay in your wheelchair if you visit... OR get two lovely men to lift you up, as happened to me!!!! YEY!!!!
Anyway that wasn't the reference that I wished to make to the wheelchair title.. It was  this....
We went on to a gathering at The Works in Sowerby Bridge, I was wheeled in. And that's it, I was wheeled in! I couldn't choose where I sat, therefore couldn't choose with whom I talked. The problem  arose, not because of any lack of kindness, but space also. It just shows how vulnerable you are/ can feel when you are not under your own power.
I simply can't wait to have my own powered chair. I will then be independent , and providing there is sufficient space will be able to move around, interact and be "normal", just like you all might do.



On Sundays I love to listen to radio four.First The Archers, then Desert Islands Discs and finally The Food Program.
Last Sunday was no different except that there was also the prospect of the Wimbledon Tennis final on TV too.
Each week after desert Island, I have a go at thinking about which eight discs I would take. Imagine my thrill when two of my all time favourites were played. Firstly Martina Navratilova chose Ma Vlast, Smetana then at the end of the Tennis Let it Be, Beatles.
Id like to share these pieces with you now.


Friday, 6 July 2012


Today I wept.
Yesterday I rang re wheelchair possible arrival date....the lady said she would seek info and let me know. Well she didn't! So at non today I rang again... Apparently chair is now at Clarksons where they go to prior to getting to Halifax. I cried with jot/ relief of stress.."
You see having the chair in the drivers seat of my car means I can get out and about. Ok, whilst I'm still in this house it still means a kind neighbour,usually Steven, has to take car from front to back to allow me to get in, (remember I can only go down steps not up!), and with the wheel chair in place he too will have to drive from chair..... But no matter all this is possible, I'm sure.
But in order to actually get the chair you have to have an official handover. I have already done the assessment, (mid May), and I have an indoor chair, so know about charing it up etc... What can be so different?
Sooooo the person who books the handover works afternoons. So at 2:00 I rang. Yes, we've sorted it..your appointment is July 25 ! July 25 th! I can't believe it. I wept. I rang Michaela, who rang wheelchairs, no joy. And I'm on the priority list!!
Once I get the chair there will be nearly another week before the lockdown in the car can be fitted.... I cried again!

My life is passing. Things like this just erode the quality time I have.

I have been doing my very best on all fronts to manage the move, the bungalow adaptations, the car, the wheelchair.. It doesn't seem quite fair.
If I had a partner things would be simpler, just getting a meal exhausting. So sometimes I get a meal then I'm too tired to eat much of it. You know life can be tough.
The other thing I'm waiting on is the care assessment. I do need careers, I don't like to keep asking friends to take me/push me, here there everywhere.. It's not a matter of pride, it's about respecting the lives of dear friends. I'm not their universe!

So here I am feeling sorry for myself. Forgive me. There are others worse off. At least I do have food, shelter and plenty of wine to keep me going till eventually all this is in place.


Thursday, 5 July 2012


Tonight I've been watching the NBC tv program on old age. One of the people said ..I'm resigned to being here...referring to being in a residential home. I feel that, at the moment, I'm simply not resigned! I shall fight for my independence all the way! Today I had a rise and recline chair assessment. Mike, the assessor was brilliant and soon(!) I shallhaveachairthat supports me properly. At the moment the chair I have gives so little support that the physio,Michaela, has to come to stretch my back and neck muscles as they ache from suchbadsupport. But the really good it about this assessment is that I will be able to choose the colour." Yey , I think a dark grey willbe great. My carpet is pale grey and sofa bright pink,so it will look really swish! Tonight I had a potential disaster... I was putting a cold tray back into the hot oven. I fell into the oven.thank goodness the tray I was holding was cold as I landed on it and thus was ok! I so look forward to the kitchen in the bungalow which will have low level appliances, so this I will be safe. Oncee again I apologise for spelling and punctuation errors. I'm writing this on my iPad... Tomorrow or sat I collect my new computer so all should be well once again!! HUG ME,I'VE GOT MND

Wednesday, 4 July 2012


Wel I had to think of a title other than Wednesday!!

No profound thoughts today. I should have been
N out to lunch with the Cz group, but I simply felt too exhausted to do it.

Tomorrow is busy. Janice is coming to do more sketches. She is painting my portrait. We have lunch together, but Janice is vegan so that presents me with challenges. BUT I do always succeeded!

Also at noon, the rehab team arrive plus people from the chair suppliers, with three chairs! Do they know how many steps they will have to Cary them down/up!

Bethan ,OT, rang and suggested a Zimmer type frame with shelves which may help me with emptying washing machine and putting it on rack. It's v v difficult holding anything heavy as I get so unbalanced... So this may well help.

I also found that the referral to Oveergate hospice has been done. It's interesting that on the news yesterday that death in a hospice is thought to be most caring and respectful. That's what I want, when the time comes...for myself and for my family and friends



Monday, 2 July 2012


Everyone should carpe DIEM...BUT on some occasions we all find this difficult. For me I've been struggling... I guess it's about this continuous exhaustion really. Real deep exhaustion is a facet of MND. It is deep, so so deep it is unimaginable unless you are there.. And life on your own,struggling with the issues that I am,ie the house sale and move etc...makes you feel low and vulnerable. On Saturday three of the group that I went to Thailand with 18months ago,came to visit, . I had loked forward to seeing Karen,marianne and Claire for so long. They all arrived about lunchtime. It was so funny. We had had one very spectacular night whilst in Thailand,drinking Blue cocktails. SO... I had bought ingredients for blue cocktails and they all brought ingredients too! When they left I realised there was much alcohol left so I do hope they come back soon to complete the drinking!! The plan was that not only did we enjoy blue cocktails but that we went to hebden bridge to see al the street fun connected with the arts festival... We left in dryness, but soon a monsoon arrived , I got soaked,my shoes have taken till today to dry! Sadly I was so shattered by the experience that I simply could not go out to the restaurant. The girls went to hebden and collected Thai food as a takeaway. It was lovely, but I was disappointed that I simply could not carpe DIEM. On Sunday we went to look at the bungalow and then on to the robin hood for lunch. They left about 2:30. Again I was so tired I simply sat in a chair for the rest of the day.... And I had been pushed around, looked after...actually did nothing... So Why,Why,Why do I get so exhausted. Well I know the answer, it's the MND.... But s..t it's hard to cope with, so so hard. Today I have been very weepy, . Bethan,my OT came, I cried. Michaela,my physio came, I cried. My stylus for the iPad broke, I cried.. Oh and my computer packed in too, so I cried! These days don't last too long, well I hope not... Michaela contacted the hospice. I think this is where I wish to die. I know they are kindly to patients but also support family. And no matter that I can do so little for my girls now, I will never stop beingg their mum and thus always wish to care for them. It seems that Oveergate hospice will give them support too. It seems to me that where I die has to be as kindly for Eliza and Christina and their families as it is for me. So this was hard. A referral to a hospice. On Wednesday I am going to the incredible edible meal for the Czech visitors, being held in the Todmorden Unitarian church. BUT I won't just be meeting with friends and enjoying the lunch. I will be carefully looking at the building as this is where I think I will have my funeral. So nothing is quite as it seems for me at the moment. Well never is it as I try to present. I try to be normal and as positive as can be, but underneath there is always this river of thought... I've got MND. I'm terminally I'll. How long do I have left? Why can't life be normal? Why dam I no longer useful? I'm just going to publish this copy. I'm writing on the iPad, and I find it difficult to redraft on.. So forgive spelling,punctuation etc errors. I'm feeling low friends. So please send your hugs to brighten my days. Thank you. HUG ME I'VE GOT MND