Sunday, 30 September 2012


Friday and I was just out of bed when the ambulance service arrived for the ecg machine. Weirdly I didn't really have the heavy heart-beat that was being checked. However since the machine was off in the last 48 hrs I must have had at least 5 episodes!!!

Barry had responded to my plea (well txt), for help, and arrived about 11:00. I had decided that as Meggie had been in the cattery for over two weeks and now at MM for 15 days, it was time for her to be allowed out. 
The reason I needed help with this, is that the utility room is too narrow for me to get to the back door. Meggie would have to be pushed through the cat flap in order for it to recognise her microchip. Meggie would then be the only cat that could use the flap. 

She went out happily, but when it came to coming back in she stood at the door.. and didn't push to enter!!  Eventually Barry caught her and shoved her back through. Even now, I'm not too sure she is using the flap!

We put the easel up and attached the day-light lamp and moved round yet more boxes!!
Before Barry left he hoovered. He seems to like hoovering,  and I wont spoil his fun !!!

On Friday night I was supposed to go to the pictures with Elsa and Julia.. but was too tired.

Saturday and Elsa was at M&S, so got meal, a dine in for two. Cooked chicken and squared potatoes... Simple meal Sat night. 

AS Meggie was now allowed out I went to the bins and also sat out for a brief few moments of sunshine. It was so good to be able to go out without first locking her in. So good, to just leave the doors open. Meggie joined me in the sun but went in before I did! I think she went through flap later, but it takes me so long to get there to see , she has moved on by the time I reach the utility room. 
I worked on the Calendar Girl sketches.. on the i pad.. 

This is one of my favourites...

Watched X Factor.. Good over 28's but think that's about it.
Alarm on , .........................because......

Alarm on because Liz had phoned last night and offered to come and make breakfast. I got up showered, had just finished when she arrived:.... With eggs, bacon, mushrooms, tomatoes, fresh bread rolls, orange juice, a Sunday Times...........and her printer cable. ( I cant find mine!!)

We had a great chat, and lovely food and I printed out the Calendar Girls pics to check for errors. 
Since Liz left I have been working on the final versions and have contacted Justine to see when she can pick up the stick... BECAUSE...

Tomorrow, Oct 1st I am going to begin to paint again. I have one year to go till my next exhibition!
The work I do may well document the use of my hands.... who knows. I am planning to open another Blog, to be named , "A Year In My Studio"... wish this was A year In Provence or something  similar with sunshine andwine and peace....!!!! 

This Blog will be occasional writing, documenting my work and my feelings about it, and will include lots of photos. 
 I had to pay to continue with my web-site and it  had to be resurrected by  July when I was up to my ears in moving, car etc.   I decided to just let that web-site die... maybe this new Blog will serve as well?

I am actually sitting on a "REAL" chair. I have had 4 5"  elephant feet, put under my chair, covered in a brill Bahama Blue cover.. I dyed it from beige.. How nice it is to be "normal". The  reason I have it is to peruse my paintings as they progress. 
Oh, I did say lovely colour of chair... well it was! But... I had to water the plant on the window sill. As I moved it,I noticed that the mat underneath had gone mouldy and had leaked colour onto the window sill. Got bleach spray... window sill didn't come clean but, as Im a little clumsy, I dripped bleach onto chair. Rats!! Lovely Bahama Blue with white spot !!
A last thought.  I turned on TV whilst I did drawing... The filer was Towering Inferno... quickly I turned it off.. 
This film was on on the night my daughter Eleanor died, it shakes me even now, I re-live the event... over and over... and it was 31 yrs ago. 
As I sit here, her picture is on the window sill... she was a very pretty baby... 
Its strange how we respond to triggers. Usually for me its a smell. And I must say these triggers are usually pleasant and welcome... but not Towering Inferno.


Thursday, 27 September 2012


In the early 70's when I was first teaching in Hertfordshire, theN Cambridgeshire, we used a set of "scheme" books which included one called Hospital Day. The name of the series alludes me. But one memory remains: many of the youngsters in Herts used to call it HOSPICLE DAY! So for ever-more any visit to a hospital, for me, has been called Hospicle Day.

This morning my alarm was set for 7:30... two hours earlier than normal!! (Mornings are hard with MND).I dressed ,got breakfast, shut Meggie in lounge and kitchen with litter tray. This is no mean feat, closing doors with stick, moving chair back and forwards to get hold of handle. 

Anyway, I was ready at 9:00 and ambulance arrived. When this transport was booked I had explained that I was in an Innvacare Dragon...The ambulance driver looked at chair and said that she would not be able to attached the lock-down to take me in my chair. I had to go in transfer chair.. Using one of these means I no longer have the freedom to move myself, am entirely dependant on others to move me... And I hate it!!!

So off we go, a lift into the ambulance . A new experience. Have to travel backwaards, given a bowl in case I'm sick!!!   
We collected one other patient and I was in Cardiology at 10:00. Perfect time for my 10:00 appointment. I had an ECG, then a 24hr one fitted. I was done and dusted by 10:35.

So next bit, wait for ambulance home.   and wait.... and wait............AND WAIT !  Plonked by a pillar.

Now, you may remember it was in the Cardiology Dept where I couldn't get off the loo, as the hand hold bar was loose.. well now even if it is fixed (which it should have been) , I can no longer get off toilets for the disabled as they are too low for my weak legs. 

So I started to worry that I might need the loo! Claire, the woman who pulled me off before, was on duty. I called her over and she reassured me that should I need help she would get a nurse. She offered me a coffee, and later another coffee and a sandwich..

As I waited ... and Waited... and Waited... eventually for 2 hrs!!!!

As time was going on I realised I wouldn't be back for the Physio appointment which was to be at 1:30.

 I made call and cancelled. This is a shame, as my back and head ache, and I blackly need the stretches that Michaela would do. 
But, sadly, not today. 
The rise and recline chair that was first measured on 24th July (... and is still not ordered!!!!!!)   ,will help with this back pain.

I got home to a grateful Meggie at 1:35.

I'm tired. I ache. I havens the energy to put last nights dishes in dishwasher.. (Ginny coming later, so I'm sure she'll help). 

I'm fed up as all this would have been unnecessary,  if I had a useful car.

Weep?... I could  SCREAM!!!!


Wednesday, 26 September 2012


  •  I don't know if I spelled TODAY'S correctly !
  • My fingers keep landing on the wrong letters.. have to use spell check extensively.
  • York, what a terrible night the people near the river will have, knowing it will rise till 8:00 tomorrow morning. 
  • My new cleaner, Laura, started today. The house sparkles. YEY!!
  • Spent hours on the computer today and yet have only just got to write this. Where does time go?
  • Had shower tonight as have to be up early tomorrow, ready for hospital transport at 9;00. I'm wondering if there will be a wheelchair lift, or the dreaded double ramps,   ie  to get in ambulance.
  • Karen and Anne came to walk me today. They know Laura , so a party could have ensued... but we got down to the serious business of my walking. I did a whole circuit of the house, but was shattered after. 
  • Karen needed to clean lounge then, so was glad to retire to lay on bed for a while! 
  • Ginny rang and is coming in tomorrow, more boxes to be sorted.
  • Most amazing the car brake part is in. ...........Well half of it!    No-one realised that the part needed was actually in two parts... so now a another few days wait for the second half. The phrase Booze up in Brewery.. comes to mind.. This is simply un B lievable... how can professional (?) people be so dim, so useless... totally beyond belief.
  • Andy Williams died today. My mum loved his show... all except for the last last song.. "May Each Day Of The Week Be A Good Day.."
  • I didn't like the show, except for the last song!! 
  • Do I still like it? Will check on You Tube !

And yes, I do still love it. Smultchy I know, but what's wrong with smulch!

Thank you and Goodnight


Tuesday, 25 September 2012


A bit serious this post. My arms are getting weaker.. Lifting becomes more and more difficult.

I got a call from Overgate Hospice today, offering me a day care place. More when I feel I can write about this. Its another step on the way for me. Quite an emotional step.

I am friends, (via MNDA and Facebook), with Alistair The Optimist.. he has been a public face for MNDA recently. He is (was), a teacher, father and musician. 

Three months ago he went into hosp to have a PEG fitted. 
The PEG is a tube to feed you, directly into your stomach. 
All of us with MND, will eventually end up with one. Well I guess, unless you refuse, but it does seem to me that a feeding tube is a small price to pay for a little more life... and the NHS even  pay for your "food" !!!!!

Earlier this week Alistair wrote, " A year ago, I was strumming my guitar... Now my arms don't move.."

This made me realise the road I'm on, and to feel so sad for us all. 

MND has an inexorable march forwards,, there is no stopping it, there is no way you can tell how quickly  it will move.....  It is hard to live with all this.

Alistair's music can be seen on You Tube. I thought it appropriate to share a track with you all.

Enjoy,.............. but think of all of us with MND...............we are really trying our very best to keep strong and positive.



Today Elsa took me to Eden Spa at Tod for my nails and eyebrows to be sorted out. 
Wow what a difference a little pampering can make. 
I feel so enthusiastic now may even get time to find my mascara.. and who knows might be even more lovely next time you see me!!  LOL!!!

We also stopped to get me some cash. E got it, and I paid back via internet transfer. Bet you didn't realise how difficult it is me to manage simple things like this.

Closing a door is another example of difficulty.. I have to get litter tray into room where Meggie is, and close her in. The main doors of the bungalow both open inwards and both need to be open to get out in w.chair... This whole process takes ages when you remember how I have to move back and forward to get door handle the back to close, all the time ensuring Meggie doesn't sneak out. 

OH!!! The colour I chose for my nails is Merlot... how appropriate I feel!!!!



I had two calls from MNDA and Motability, re Car. Motability are now checking (!!!) on how I have been dealt with,  re unusable car!! MNDA woman , Carol, continues to be a terrier on my behalf, and seems to be getting results. 
Most people are horrified at how I have been treated. I wish now I had complained earlier instead of trying to manage on my own. But there is a certain pride in managing your own life, especially when you have always done so. 
I also have the feeling that though I have MND, I'm still me, still have the brain I always have had, and should manage. So thus battled on. 
But the help I eventually sought has be wonderful and I am so grateful, just want to be able to get out , to be free. 
The last 6 weeks have been just a waste of my life re car and infuriating not getting responses.... but now I am . 
So here's to help when you need it, and I should not have been to proud to ask... but I hope you understand why I didn't!

My other positive was that I met up with Laura, who makes me laugh, and who is to be my new cleaner. I can't wait for Wed when she starts.


Monday, 24 September 2012


On Saturday I spent 8 hrs,yes , 8 hrs , sorting the papers on my desk. I had hoped also to complete the sorting of the paper in the two baskets on the dining table...BUT  cant believe how long the desk took.. but the thrill of polishing it at the end and the tidy appearance was sooo...... rewarding. 
I set the recorder to record The Archers on Radio 4 on Sunday morn.

 I was woken by a txt to say how lovely a Christine's daughters wedding was, and to thank me for the loan of special wedding shoes. 
Next call was from Jane , and we arranged for her to visit at 2:30. 
Next call was from Steve, he had some runner beans for me. Yea !!!.
Later Liz rang and arranged to pop in and
Tom also arranged a visit.

Steve came first , we chatted and he also prepared the beans. 
Jane came laden with goodies. She introduced me to UGG boots ( and I ordered some last night, they are warm and light) , Jane also massaged my feet ( reminded me of the bible story) and offered to take me to the MND fundraiser organised by Eliza on Oct4th.. Wow.. how really happy this has made me.
Liz popped in . She did washing machine start, and dishwasher emptying.. and the we had a great glass of Pino Grigio.  
Tom and Iris came later with stuff from my house and a cupcake decorated by Iris herself.  ( I had it as dessert, yum.. thanks sweet Iris).

I then caught up on Downton Abbey and X Factor..................... and off to bed.
But sleep didn't come easily... does it ever.!!!


Saturday, 22 September 2012


Before I write on the main subject of this Blog, I'd like to thank the 11,500 people who have read my Blog. Keep reading!!!

SO... yesterday I had to go to Tod to take my wheelchair driving test. Its part of the health and safety rules for the loan of a wheelchair. I was to meet Pete at 1:00 by the bus station, under the arches.

Taxi booked for 12:30. It arrived promptly. I had closed all the doors to keep Meggie in in order that I could open the main doors to exit myself.
So, all well I headed out. But tried to close doors my squirming round and pulling, ( they open inwards), after much hassling and grazing of door.( oops !!!) I realised that I had to get out, turn, then back outwards pulling door.  After many minutes I managed.

I was wondering why driver couldn't see my predicament and come to help, but he too had his own predicament. He was getting the ramps attached. Much to my horror, I saw it wasn't solid but two separate tracks.. no room for error! So, putting chair on high power, necessary to getup any incline, I zoomed up, just stopping in time to not exit through the opposite door!!!!.
 It was then that he explained that I needed to be turned at right angles to face forwards! Much back and forward, shoving and pushing,and I was in place, but only fitted because my feet were pulled under, very very uncomfortable. The doors had been open during this  20min process and I was now very chilled. As we descended into Hebden Bridge it started to rain!!

I saw Pete, and he suggested to not use power on chair to exit, but to disconnect drive. I went back from Taxi putting all my faith in Pete, whilst driver watched.  Driver said cost £18, but said pay on return.

Pete and I did a 45 min circuit of Tod. Including a kerb climb ... hairy you have to speed at it and pray that the kerb climber is set right, to leave a kerb you go backwards and have to go at right angles,or you may well tip.. any way I managed it all.. getting colder and wetter by the minute!!!The bottom line is that I passed, showing excellent awareness. Another accolade I could do without needing!!

I then had the first fun I've had for ages. I met up with several friends, bought some cream to make pommes dauphinoise AND a lovely BIG bunch of fragrant lilies from the indoor market. YEA!!!  Freedom. if only for mins. This is what I want to be able to do,and,  WHEN my car is drivable , I will. It will mean normality in this stressful life.

So now the taxi drive home.

The driver, and I had taken note of how to disconnect drive and pushed me into taxi. It still took ages to put on the restraints onto the wheel chair, but only about 15mins this time, Whilst we were driving back to MM, I asked if there was an extra charge for wheelchair users, as it took longer. No said the driver.

Thinking the cost was £18 I got out a £20 note. But no, the charge was £36 , but he would charge £30. I paid £30.

Got in wet and very cold, made a cuppa and went to rest on  bed. Elsa popped in for a short while and I got up. She made a coffee. After this I had planned to make the potato onion and bacon bake... but too tired, I had a bacon sandwich, and even that I couldn't eat all, so so exhausted.

I slept for 12 hrs.


Thursday, 20 September 2012


Everyone was rather early today!!
 Pine furniture (Mytholmroyd),  delivering TV cabinet at 930- 10:00, arrived at9:15!!! Not even had a coffee by then!!! But so glad it's here. Now can use bigger table by my bed giving me space for TV and phone and water and tissues.

At 11:00 Howarths arrived with all my arts materials that had been in store. Exemplary  service always.

At 1:00 not 1:30 as expected . Barry arrived to help sort. Ann P came at 1:30... and we worked together to store/place every thing!! YEY!! 

Just the garage to sort.. major job,,

I'm doing the sketches for the Calendar Girls production which is on in October at Todmorden Hippodrome. This is keeping me busy re art, for the moment. BUT I cant wait to get back to painting!!!

Tomorrow the road-test for me in wheel chair... I do hope taxi turns up after all the fuss re-transport.

Got a text from David, I might need magnetic handbrake?? More money??? 
MNDA Carol not back to me yet... but I'm sure she will be soon.

The car issue causes such stress. I seem to get really heavy heart beat when I think of it... that's why I'm having 24hr ECG next Thursday.. just to check.

OH , nicest thing, just before Barry left, he hoovered all the house. This gave me the strenght to wipe all the surfaces down. I so like a sparkly home.  

Thank you Ann and Barry for your help.

I am soooo fortunate to have so may such brill friends.


Wednesday, 19 September 2012


I woke at 4:00 this morning. I tossed and turned and eventually got up at 5:15 to make a cup of tea. This was no easy decision. 
Remember I have to put on foot support, move to the bottom of the bed, balance, move into chair, unplug , turn it.. go to loo (inevitably when you wake up), get to kitchen. Stop chair, stand, balance, fill kettle,not too full  !!, as then its too heavy, put on, reach for tea bag, fill cup, back to chair, move over kitchen, get in position to open fridge for milk, which requires I turn chair around, Milk in... carry hot tea carefully to bed room, pop on window sill as I balance ...moving along the cup with free hand. Tentatively get cup on bedside table. Drink tea. Watch sky get brighter, fall asleep at 6:30.. wake with alarm at 8:45.

Same process again, but this time I put coffee in cup!! and don't go back to bed. 
I watch the cows in the field, and eventually get cereal, eat some of it and manage to load dishwasher. ..... Four trips to utility room, each involving a trip to turn in the hall, the right angle turn to the utility room cant be manoeuvred in one. Each piece placed involving a balancing act....

Shower time. Got into robe and was just about to turn tap on when I realised I was in the wrong chair! In swapping chairs I got them totally stuck together, It took about 10 mins to do the transfer!!

Shower, hair wash. Clean clothes. Getting clothes out isn't easy, as yet again I have to balance, whilst reaching for a jumper I have to catch myself on the wardrobe door , to prevent a fall,but it swings... I thankfully land on the chair!!!!!!

Dressed, another cup of coffee.. same process.

I rang David re car. He answered (YEY! ???) said be was getting in touch with man at Motability. He would ring back.  
Rang Hosp transport to arrange transport for Thurs next week as I'm have a 24 hr ECG fitted.

I rang David, he had had a missed call from Motability, would ring them back then get in touch with me. 


And now we get to 12:30. Tracy, cleaner arrives. 
1:00 Tesco man arrives. As he picked up the 5litre bag of cat litter it split.. It bounced all over the kitchen.. into every orifice!! He got broom and was sweeping up when Tracy joined in with a dustpan and brush.. this caused further eddies of cat litter... what a mess!!! But the funniest bit of the day !!

Tracy did her stuff and as she was about to go the MNDA woman , Carol, rang back. She seems to be a terrier.. and is taking over sorting this for me. Thank goodness, I so need an advocate.

I then went to feed Meggie. I couldn't find her food tray. Eventually I saw it had been moved to the utility room... WHY?? 

It took some minutes to pick the bowls up, and I spilled her water on the floor and down my clean ( this morning ),  trousers!!!!  V V upsetting

This evening I have eaten. A frozen asparagus risotto, to which I added some salmon.

When I went to turn bedroom light on and close curtains, I saw my water mug by my bed. Why did Tracy move tea mug and not water mug??? WHY ???

Im feeling, sadly,  stressed... 

BUT tomorrow my easel and art stuff arrives,...... its been in store.

Normality ??? Hope so.



YEY!, This has been hard , but at last I have caught up on the Blog. 

So back to normal, NORMAL... what's normal??!!!



I contacted David Knights... no reply... I am so so anxious re the car that I wrote an email to MNDA. I received a reply asking that if my voice wasn't affected could I ring them back.. but it was now too late to ring when I got this so a plan for tomorrow.

Karen and Chris came to walk me, and I romped round from lounge to bedroom to kitchen to lounge.
  I was shattered !

Last night I had cooked a tomato sauce for pasta, but was too tired to eat it. So I got out some lardons ready to cook, to add to sauce for tonight.

I seemed to have got out of kilter with my medication, particularly with the Riluzole which is the drug for MND. I had got Rebecca to go to pharmacy to ask for my meds. There was a bit of an issue that they were not due. Anyway, Rebecca was to collect late yesterday but her car broke down! So this afternoon she came over with Iris and delivered a full lot. 
Rebecca is so good and intuitive, I do wish she was my carer, She helped by finishing emptying the dishwasher, watering plants, putting powder in the washing machine ready for me to put in clothes tonight. AND we had a cuppa!!! 

Tried David re car again... no answer.

After Rebecca left I tried to catch up on this Blog,,, didn't quite make it, but will be up to date from today. YEY!!!

I eventually cooked my dinner. As I was about to dish out, the doorbell rang. I turned in chair, catching the back of the chair on the oven door.! Crash/bang.... eventually I got free, went to the door, only to find no-one there.   I then noticed Eastenders was on... they have the same doorbell as me..! OH NO !!

Dinner ready, Really tasty. and some tom sauce in freezer and a portion for lunch tomorrow. 



First thing I noticed as I got out of bed was that the connector was in for the arm of the w.chair but the other connector had come loose... so chair not charged !! RATS!!!
My  first call was to Pete at w.chair services re the rules on carrying w.chairs in Taxis.. he said to get in touch with licencing at Calderdale. And as the chair hadn't charged and as I had no Taxi , we postponed our road test till next Friday.

I rang Calderdale. I spoke to licencing and they put me through to the legal dept. It is not the case that you cant carry a motorised wheelchair. Did I wish to complain. I thought it fair to re contact Station taxis and get them to clarify. As I thought, they backed down and said that it was the case they they didn't have a suitable taxi.

I rang all the taxis in the HB Tod area. It turns out that only one firm, Valley, have a suitable taxi... and that one comes from Bradford. I booked for next Friday ( hope I don't pay for it to come from Bradford!!!).

At 10:00 Karen and Chris arrived to help me to walk with Zimmer. Fran arrived and I asked her start clearing the kitchen.After a short romp(!!) to the bedroom and back, I worked with Fran to do all the clearing up jobs.

At11:20 ish we stopped for a snack. We had a discussion re the role of cares and my needs. Often carers work with elderly, and they need social contact, but those are not my needs. I feel there is more to be discussed here.

At 4:30 Bethan, OT, came .... I asked for update on rise and recline chair, (her response that she will check), and also  help to raise chair in studio. I thought plastic cups were provided, but apparently its more technical than this! We discussed my transfer from w. chair to shower chair... still not got a good system. Some days seems to work better than others. It all depends on the start position of the chair and the space around it , which doors are open, which closed etc etc.. Showering is not an option, its a necessity...and I still haven't cracked a system. 



I thought this would be a quiet day.... I woke v v late  ,,, no alarm set, YEY!!!

My fear and frustration at the car had turned to anger and positivity.

Christine C, fellow artist, visited in the afternoon. She brought  lovely geranium-type plant for the garden.

As she was leaving,walking  in the rain, Liz arrived... and gave C a lift back to HB for a bus.Liz returned with veg crisps.. we had a glass of wine, even though it wasn't yet 6:00. Well it was the weekend!!
I asked Liz if she would cook me a roast chicken dinner sometime. Yes she said.

I absolutely crave roast meals!

Liz went and ,an hour later Elsa arrived. We discussed the car. Decided I need an advocate.

I emailed David Knights re car asking him for a response .

I then tried to book a taxi for Mon to get to Tod for 1:30 appointment to do road test with wheel chair. The taxi firm at Tod station said it was Calderdale policy to not take people in motorised wheel chairs.

Too late to do more , I set alsrm for 8:45......................


Tuesday, 18 September 2012

SO NOW......

So now it should be Sept15th, but this was such a traumatic day, I couldn't not write about it earlier.. ... So now to resume sequence!!



Fran arrived at10:00. We had a good session.

John and Glenn came at 5:00 on the bus.  Glenn had made a lovely meal. Even brought garnish. And a choc cake with custard  for pud. ! YUM!!! But what huge potions!!!! Couldn't eat it all, but it really was great. Thankyou.

Before we ate ,G and J sorted the furniture in my studio. We tried all ways round, and they were both v v helpful and worked hard at getting it just right for me.
A lovely evening.



A calmer day I hope...............

But the Closomat didn't work.. no power. Mick came and admitted he had put the wrong size fuse in.. It got fixed but the loft ladder was difficult to get back up. 

Rebecca visited for an hour and (as always) , did so much to help me, she just has the touch, and would be an amazing carer.
Ginny was on a walk till four but promised to arrive and take me to get Meggie. However Pat rang and asked if she could pop up. Whilst we talked, she realised that this was the day I planned to nget Meggie. Pat offered to Meg and to go to vets for Flea drops for me. Bless her. Meggie was introduced to Misty Morn at2:30. Ginny arrived at 4 but was rather pleased, I think, that we didn't have to go to cattery. She had had a long day an wanted a shower. But many thanks to both Pat and Ginny. 

Pour Meggie, she was so anxious. She recognised me , but nothing else. Her neck and tail we were elongated for a while. then she found a safe place by the radiator and behind a chair. After a while she came into my lap and shared laps with Pat and I for a while. 

The rest of the evening and night she spent very very close to me. 

It was lovely to have her back and near me. A note is on the door.. To indicate that she must not be let out, Every visitor has been so careful and considerate of Meggie, 

I think the whole world knows how important she is to me.



A manic day!!! ...  headache and rest in bed needed....................... Because....

Got up showered! The usual performance with swapping of wheel chairs. Perhaps ,I turned on shower harder than usual, .......but the wet room flooded.. As I saw the water was about to go into hall, there was no other action to take , but to throw (clean/white), bathrobe over lake of water. Had to leave shower room, in push wheel chair, covered only by small towel which fell off!! Glass in front door clear(I'll get a curtain when I can go out in car!!!)... so,now  nude , I got to bedroom! No passers by, unusually, but thank goodness!!

At 11:15 Samira arrived. Samira is a dietician, and we talked about my problems of time taking to cook and thus not eating a proper meal. I have a resistance to ready meals, ( what scuffers have !!, Judgemental , I know!!), but she reassured me that a few ready meals would be OK. We also talked about my throat closing when faced with large things.. like an apple. I simply haven't managed to eat fruit, always a former favourite. So she suggested that I carry on with Fran chopping fruit , but also to buy ready prepared fruit snacks.Expensive , but necessary. We also discussed high protein easy lunches, and she reminded me of sardines. So they will be on my next Tesco order. A very good session.

During this time with Samira,  Mick, sparky, was here putting in a new socket in the bedroom. This will so help charging the w.chair at night. I have been doing it in the kitchen, and having to transfer to the shower chair to get to bed. The installation of this was noisy, caused the electricity to go off. The fall detector then automatically gave the message "WARNING, NO POWER CONNECTED" , every few minutes... Manic!!!!!.. and yet the session with Samira was good.

As she left the man from building-support arrived to fix handrails in bathroom and toilet and to fix the door key-pad. He did his job and left. It was only then that I realised there was grit and dust from drilling everywhere he had been. !!!

At12:30 , Tracy my cleaner, arrived for her first session. She bounced around, which did somewhat surprise me, as she is a yoga teacher. I gave her the very firm instructions re cleaning the Closomat toilet. NO bleach must ever be used , She then did a deep clean on the bathroom. The dust from the grouting was not cleared off. This was a great job and she did it well, But the floors didn't get hoovered,  as it all took so long. Next week I hope the rest of the house will get a good got through. Though it will take a while to get to a normal clean ,as all the windows are dusty and skirting boards etc... after the building work.

Enough for one day. I had a rest on my bed.



I woke with fear in my heart. Today the day of the first driving lesson with the Green Van/ Car/ Monster!!!!!!
Bethan and Michaela arrived at noon. I had my first walk with zimmer. A first walk for  2 weeks, since the fall at Thorn Place. I managed from chair to hall, then hall to bed and vice versa... was exhausted!!!

Got a call, Denis, driving instructor, had been held up in meeting, would have to cancel lesson..
Was I happy???? ... yes and no!!... needed to get this first session over and under my belt!!

Tesco man arrived, I'm needing to stock up after the move. Very helpful as always.

3:00. Man from Classic Carpets arrived to re-stick floor in kitchen and utility room. It had only been stuck down on the edges and thus was very rumpling, causing wheel chair to wizz off at unexpected angles.

When he finished, I wasn't allowed to go on it till the next morning. Difficult!!!.. So.......

7:00 Tony G arrived and cooked a Pizza from freezer, which we both enjoyed with some red wine and great conversation. 



The next posts will be in the form of lists of what happened.. 

I really need to get back to writing from my heart , rather than from memories and lists from my diary..

I  See no other way to do this.. each day is so Busy !!!



Fran came at 10:00. lots of jobs done,,, the usual emptying washing machine etc.We have a snack together before she goes, usually chopped fruit and a coffee.. This has helped me as I cant seem to eat large pieces of fruit. My throat seems to close. But little tit bits, I can manage, so thank-you Fran for making it a pleasure to sit and eat fruit again.

Closomat toilet man came, a glasto fanatic too.. we had lots of exchanges of our favourite acts.

The man re the hob arrived ( did I say the hob showing a fault code, so no hob until today) .The problem was a loose connexion. Fixed.

Now I can cook mashed potatoes!! Yey! and gravy.. bigger YEY!!!

Michaela, back from her hols,came to do stretches at 3:00... wonderful stretches, and boy did I need them. Headache for two days as body so uncomfortable and taught. Really good work on the base of my neck.



Not much in diary for today except Tesco man... as reliable as ever, and Liz visiting with crisps, I provided glass of chilled white wine.

Lots of phone calls to check how I got on and requests re how was the baby... LOVELY  I replied!


Monday, 17 September 2012


Steve arrived at 12:30 and moved a few bits, got my push wheel chair from garage and we set off for Northampton at12:45. The traffic was awful.. but we ended up waiting in a noisy place overlooking the motorway as C wasn't yet released from hosp.
 I needed the loo and found that I couldn't get off the disabled toilet. Steve with his carers hat on lifted me off. So sad, It means that I will always have to carry my special toilet  seat  with me.. how discrete is this !!! Another bit of dignity stripped. 

At4:30 Baby was fine , passed by paed. C needed blood test and thus it was that we sat outside their home from 5:30 . they arrived home 15 mins later.

It was so emotional. I wanted to get up and hug my daughter, but as we were both weak, though for differing reasons, It couldn't happen. MND is limiting is so many ways you don't even think of.

I got in the home. Steve and Andy lifting me over threshold. V difficult to maneuver push wheel chair... I now realise that I wont ever be able to enter their house without considerable help... so, so , sad.

Anyway, and THE BEST BIT, I got to cuddle baby for an hour. He slept peacefully in my arms. Opening his eyes once, and then I said , "He's opened his eyes"... and he immediately shut them.

He was so lovely, cuddly and perfect.. I cried a little, it was so emotional!

Anyway at 7ish, he was making noises that indicated he needed feeding, and he had done a poo... so it was time to go.

We got home at10:30, my ankles were like tree trunks, so swollen, but worth every moment.



At 4:37 am Andy rang, I had slept with telephones under my pillow. And the call was to say that baby Oliver William Patrick had arrived , weighing in at 7lb 9oz.
Apparently after A left at 10:00pm and C was, enjoying the gas and air. Andy got back to the hosp in time for the birth.

So pleased they are both well ,and all very happy.

I couldnt sleep afterthis excitment. Made tea and watched TV. On the news there was an article about children who may not feel it "cool" to read.. I thought of Tom, as thatis exactly what he is trying to dowith his writing... I went back to bed at6:45, and missed   Tom on TV! What a shame.

I had contacted the maternity unit prior to the birth and explained my situation. They said that there were two post natal wards. I would not be allowed to visit the upper story one in a wheel chair, as , though there is a lift, in case of fire I wouldn't be able to use and thus couldn't visit. Therefore C needed to be on ground floor ward. Well the full importance of this didn't get through and C was on the upper ward. So I couldn't visit my grandson on his first day here.

New plans made and Steve Coop to take me down on Sat 8th. 

I had a good but excited sleep.



Baby's due date!  Morning and no baby. Eliza, Andy shattered.... well,  and Chrissie too....

Tom had planned to visit as a stop over on a bike ride. We cancelled this as he had offered to take me to see new baby, and we didn't know when/if we would be setting off. 

Surely baby would come soon so we planned to leave at noon on Friday, Their car back from service with new tyres and full tank of petrol, we're raring to go!!!

Still no baby!

Sofa arrives, Barry and Fran had moved the leather chairs into the garage , ready for this.
It arrived, sat like a bright pink jewel. I was so pleased. I sat on it, very comfy.... and then found I couldnt get off. The delivery men lifted me..Sad  for me, but great for visitors to enjoy.

Still no baby.

But things are moving along. C now in induction room. A can only stay till 10 as she's not fully in labour... her will be called if/when this happens. Eliza goes home for some well needed sleep. 

I'm still in a tizz and go to bed in the early hours.  



Today I had planned  loads of visitors and some  action  ...

BUT the day, most importantly,  started with a call from Andy to say Chrissie had started in labour.. I immediately went in to Tizz mode, had contractions,(!!!!) felt generally very anxious..... It seemed so hard being so far away and unable to get near Chrissie...

Sue came and we did more putting away. She kept me on task as I was in such a tizz.!!!! She brought a plated meal, and  lovely sandwiches for lunch , As it was sunny we sat outside.Sue put picnic on table on lawn, and asked me which side I wished to sit... She hadn't realised that I cant go on the lawn in the wheelchair.. So I sat on path, not far away, and we enjoyed the sunshine..

No Baby.......

At 2:00  the podiatrist, Sarah, came. My left leg /foot is sooooo floppy that a new support might have been the answer. She took this thing from its box. Horror!! It was a clear plastic foot base with a 12" wide strip of plastic to go up the back of your leg, attached with Velcro. It looked so alien, and I couldn't bend at all in it. So Sarah decided also that it was not to be for me.. another black foot -up on its way!  This will be my third, and whilst they aren't comfy, my foot is reasonably supported. Without this my foot simply flops limply! When I move it is necessary to wear it, as my foot goes under itself and I roll over it. So if I am to get walking again I need a new stroger support... the old one is now not very strong, elastic gives eventually ..

So Chrissie back from hosp visit, gentle contractions and she's coping with Andy and Liza, at home.....

Bethan OT, came at 4:30 delivering a zimmer. As I haven't walked since the fall in Tod it is important to try to get back on my feet, and the only way is with a zimmer.

No baby..................

Richard had planned to come up with new Misty Morn nameplate and to put up brackets for hanging baskets. The lovely ones, given to me by Tom and Rebecca and Iris, are on the bench awaiting hanging. But Bonsalls close for Sept break, and no brackets till then!

Chrissie still in labour........Plan is to go in at 8 in the morn if no further on!!!!

But contractions increased and Chrissie went in... A and E up all night in turns with C... no baby yet!



Today seems to have been a quite day with two helpers.. Linda and Roger. They worked so hard putting more stuff in the loft and helping ME on the road to being sorted.
Thankyou to them both , and everyone else, without whom I couldn't manage.


Saturday, 15 September 2012


This morning I woke with pain in my right hip. I had woken in the night also with  pain in my left hip. I think this is because, whereas a person without MND would naturally turn in their sleep, then a person with MND, simply doesn't. There must be a muscle resistance to turning easily, and thus you don't.

I have been asked by social services if I need help turning in bed at night. So Far I've said no... but I can see a day when this will be necessary. For now I'm thinking , should I have a different mattress?...... Something to talk through with the OT and or Physio.

Got to kitchen , put kettle on, fed Meggie. Looked at her litter tray, another early morning job, clearing it out . BUT she hadn't used it until last night. Shock, I guess, and....BOY!!! did she use it!! So my next task was to bag it all up, put new litter in. Put bag in bin-bag and hope someone would visit and put bin-bag in bin. (I can.t get there at the moment, car parked wrongly, but after driving lesson today will park so that I can get there.

In doing litter tray I spilled (clean) litter over the hall-way carpet, and can't reach the dust-pan and brush. It is very difficult to get the chair into the utility room without getting stuck. This causes real probs on using the washer and the dishwasher............... more later.

Just settling to Muesli and coffee when I also texted Chrissie. Apparently Ray (Grandpa) not going over ,as Eliza's dog , Stomp, had, had flees!  As new parents I understand that they are cautious, and I'm sure they will reach a balance between risk and and caution soon.

Whilst all this was going on Elsa phoned and visited with Deborah, made coffee, put on washer and dishwasher and put bag in bin . YEY!!

Showered. Just drying when knock at door, doorbell didn't work (!), Tom and Iris at door. Tom pushed me to bedroom and closed door , I dressed ,he made a cuppa. How lovely it was to see them both.

After they went I had two practise runs at locating the chair in the car. Good at getting in, first time both times... but getting out SCAREY!!!!! I never was any good at reversing!!!

Justine came at 3:30. I am doing the sketches which the photographer shows to the ladies of Calender Girls, on the stage . Play at Todmorden Hippodrome, opens Oct 10th.

I waited for Dennis , driving instructor... When he arrived we got (well he got ) drivers seat into car. We went for a drive. He realised how difficult it was for me, as hill starts v v difficult if not impossible. The answer to the problem is to disengage the accelerator  from the brake.. which may be illegal... or move to a flat place like Norfolk!!
I didn't actually drive... He parked car so that now at least I can get to garage... but drivers seat in, empty place for w..chair.  Abandoned, till help is found

I have spent £3000 on car and £3000 on adaptations.. and then there's my weekly Motability money!! .. and I still cant drive. I'm still not free. I'm so frustrated! I just want to weep. Im fighting MND.. I don't want to fght a B car too.. this is hard... so so hard. I feel alone and so B angry, so diolusioned so so B upset... words simply cant convey my anger and feelings...

Elsa came in tonight and we are to plan a campaign... £6000 brings a lot of taxis!!
Watch this space. Elsa is B mad on my behalf, and I am so grateful, because I so need help, so need an advocate.. I'm loosing the effort, don't have then strength, at the moment, to fight re cars and every thing else that daily life entails.



Fran, my carer, arrived at 10:00. A change from originally planned. Originally it was that she came at 9 cooked my breakfast whilst I showered.. but this seemed to take most of the two hours, so a change of plan. Fran was to  come at 10, I would then  be up, and we would do things and have a snack mid morn.

 I had made a list of things that needed doing. Things that,  formerly, would take me only a short time, but now take ages!..... or things I cant do because of access...( And you simply can not believe how frustrating this all is!!!).... So, dishwasher emptied, washing machine emptied, bins sorted etc.. 
At 11 we had a snack of croissants from freezer,  with halva and bananas, brought by Fran. We then sat , and did some paper work. Fran left and I completed a life style info sheet which, with DNA that I have given to Sheffield hosp, will contribute to research into reasons, trends , identifying MND possible victims!! (strong word , I know!!)... (and ,sorry weird sentence!!)
Bless them ,Tesco arrived on time, in the afternoon... the real steady rock of my life!!
Bethan OT, came late afternoon and we planned where I would need hand rails and also attached the fall detector service. 

After Bethan left I called Fall detector to get key-safe put in lobby. I was told it was not possible to move key pad from Thorn Place.. a new one would have to be ordered! How daft I thought. Dafter still I rang environmental Health re refuse collection, As I'm disabled I don't have to lift bins down to road.. as was the case in Tod. All OK Ms Woodman. Ten mins later , phone call,.... No, not all OK Ms Woodman... You have to sign a form to say you are disabled at this house. 
I'm still the same person, still paying council tax, actually even more disabled than when I first signed the form...
So... a dear lady comes from Hx to get me to sign a form saying I have MND and have DLA... if only things could have changed between addresses!! How magic that would be!!!

How stupid is all this... What a total waste of tax payers money!!!
Makes me very cross!!



Today, Theresa came over and we did more, YES MORE, sorting , of drawers, boxes. Theresa brought me two lovely thin china mugs, purple with white spots.. so lovely.Thankyou.

In the afternoon Alice came with baby Flo and Di visited. Flo is sooo sweet and only took a short While before she opened up and chatted and played happily. So lovely to see them.

Then.. I cooked :pork chops, stuffing balls, roast potatoes and runner beans... took a total of 3 hrs. After this time you loose the will to eat!  Most chucked in the recycling bin. Must find a way to eat healthily and get meals quickly!



I have realised that the intensity of feelings which I felt on the days on which I didn't Blog, is not the same as when I Blog directly each day, ie  not notes from my diary.
Therefore, what I plan to do is catch up on each day, but its now 15th Sept, write todays also, but save it and publish it when I do catch up.
Hope this makes sense!    In this way I will not only catch up, but there will be a number of Blogs on the day I do which will have been written on the day they happened, ie starting today 15th!

The raison d'etre for my  Blog, has always been to share my thoughts and feelings, as I live with MND... and I feel this is best done in this way.

Hope you agree, dear readers.


Friday, 14 September 2012


White Rabbits!  !!

Mum said this brought good luck if it was the first thing you said on the first of a new month.. shame I didn't remember till lunchtime!!

This was shower day. All the fiddle of getting in the chair happened.. clean clothes still awaited, and i trusted I would be a new woman, well I was clean anyway!!

Tesco man arrived.. found me via mob, sat nav was about to send him down a lane!

My diary seems amazingly empty for this day. I'm sure it was busy, as I have had no calm days yet! But obviously no booked in I'll skip on to tomorrow!!



I woke, as lonely as I had been ,when I fell asleep. Totally desolate, at the bottom of an Everest.

Jenny arrived late morning and we did some more sorting of boxes. I had 2 aims: to find my toothbrush and to shower. Eventually we found the toothbrush. Oh ! , the pleasure of clean teeth. But the shower was not achieved.
Anne arrived at 2:00. Leaving her to do washing up or some similar, I excused myself to shower. All clothes out, got into bath wheel chair...( Its one you use your hands to push (another first) and it has a horse-shoe shaped seat, so that you can wash thoroughly. )
So there I was poised. Water on.. cold..wait..cold..wait..cold..
Eventually it occurred to me that I could sit till Christmas and the water wouldn't get hot.

Anne suggested ringing Richard.( I felt like suggesting a cry!!).  He arrived with Steve and they both searched for the boiler. To this day I don't know where it is , but rather think it must be in the garage as water takes ages to get hot into the house. Richard found the fault, YEY!!! .... nothing to do with the boiler. The valve to allow water through had been turned off.
But by now my dirty body was dressed and it takes so much energy to dress and undress that I thought I would simply stay dirty, and I did.

Richard then spent a while sorting out email , BB connexion etc for me and both men fiddled with knobs and controls on things.. Stressing me out as I'm an instructions person, especially as the new stuff is not mine.. anyway, they realised I was getting anxious and stopped fiddling! Thankyou!

We also talked about carers and it so happened that Anne's dads, carer, lives in the road immediately opposite me. So contact was made and an arrangement to  meet the following day.

That evening Rebecca and Tom were due to bring over my freezer food. They had been held up and asked if they could bring it the next afternoon. As I has no food I did say that I hoped they could bring it , even if late.
Anyway all was resolved very happily as they came over bringing Pizza!! So lovely to see them all.

I went to bed. and even though I had been surrounded by kind helpful people all day I still felt the desolation ........ a horrid empty feeling.



I woke at 7:30, dressed....... took some photos... Elsa arrived at 8:40 and Howarth's at 9:00.. John at 9:30...

We sat, made tea, and I smoked a few cigarettes... until the kettle boiled over and wrecked the packet!! A quick shufty through the unpacked boxes, revealed another packet... was I ever pleased.

So at about one-ish, all was packed, and it was time for me to leave. I felt tense.

The Howarth's men carried me out on my transfer chair.
I got into car, but couldn't effect the lock down for the chair. I had forgotten that the passenger chair needs to be pulled forward, and John was sitting there. Howarth's men made stressful, (to me )comments, like .. Poor lady what if she was alone, and in the dark!!!

Oh dear!
After I sussed that the seat needed to be forward, and John got it sorted, we were were ready to move.

Elsa went ahead to get some lunch and bring to MM.

I arrived. The traffic gods had been with me and no hill starts required on Keighley rd. But he stress of feeling I might have to do a hill start was intense.

So I got to MM. Parked outside, there were 5 people waiting and the Howarth's van. They all said go onto the drive.

As there were so many watching , and I was so stressed, I didn't do a proper swing around. Thus meant I had to do a hill start on my drive.  As ever it (the car) slipped back then jerked forward.. fast.. I nearly hit the house!!!!!!

So, for the first time , I entered my home in my new (wide ! ) wheelchair. I got through door.. difficult.. and simply collapsed.................... totally hysterical..

After a few moment I pulled myself together.

Richard needed to give me important instructions.
Howarth's were putting furniture in rooms.
Friends were buzzing round.

People surronded me, in my new chair it was so,  sooo difficult to move!!


The next few hours are somewhat of a blur.
Liz arrived, Pat had to leave... we sat and ate and drank quite a lot of wine.
Eventually I went to bed, absolutely  shattered , but slept fitfully.

One of the loneliest nights I have ever spent.
I feel as if I have been moved here to die, I feel totally, totally displaced.


Thursday, 13 September 2012


So I woke, day before move. Left knee and toes very very painful. In other circumstances I would have gone to A&E, but I knew I couldn't walk and thus an ambulance would have to be called. This seemed a bit extreme so I called Dr who suggested Ibuprofen...

I wanted to shower. But couldn't stand. A good fairy in the form of Christine Chapman happened to ring. She works as a care assistant at a nursing home, so I felt completely comfortable with her helping me into shower and even washing my back

.I changed into my last set of clean clothes prior to move

I had arranged with my OT to meet at new home to fix position of grab rails... couldn't get there so had to cancel.

Realising that I would be able to exit Thorn Place, except on my bum, I rang Howarths removals who were due to move my furniture and asked if they would carry me out too. YES, they said.

The last night was v v difficult. I had saved a meal of curry, but couldn't eat.. I slept fitfully.



Janet (reading group) came in the morning and we did what I felt might be the last of the packing.... but it turn out to be... but did do lots.

The , very sadly, Ginny came to take me with Meggie to the Cattery. It was sad to move her from her garden. Her last time in Thorn Place, her home, her security.. She was sitting enjoying the sun all day ... I could have cried as we got her into the cat box. Up we went to Knowl Farm Cattery and I could have wept as I left her. But I didnt .. I know it was best for her to be away from all the people and packing, it would have distressed her too mush. I arranged with Andrew and Margaret that she would stay until the baby was born as I didnt want to have her at the new house for a short while only to have to have to take her back again.

Steve and Es, neighbours came for dinner... Curry Take away!

At1:00 in the morning I fell in the bathroom. My fall detector didn't go off. I hurt my left knee and toes. I had my mob on me, but Voda no connexion. So a long crawl to the bedroom where I managed to knock down the main phone. I called for Steve C , his turn , everyone else had had a go at picking me off the floor! I do have a MANGA which pumps up and lifts me off the floor, but there were so many boxes in the way I couldn't get to it!!

Wednesday, 12 September 2012


Today the plane was to take stuff to Misty Morn, and the go on to Ikea... all to get used to driving with my hands so that when baby grandchild arrives in a week or so I will feel confident to drive to Northampton.

This , in fact was a revised plan.. I should have gone on Sunday 26th.. but something happened to prevent this.. my diary doesn't indicate why.

Well  I left Tod in pouring rain. As I could no longer get down the steps, and had to get out on my bottom, I got Steve C to wrap me Mummy-like in black plastic bags.! Fine idea, in the house, but as I moved down the steps the bags separated and  my bum got soaking wet. Steve who by this time was also soaking got a towel for me to sit on in car.
Ginny had to go to hairdressers and thus couldn't wait to help unload, but Elsa was there and moved stuff in. I couldn't enter house and organise as the carets had only just been stuck down and I couldn't go on them for 24hrs. 

So no visit, inside my new home, in my wheel chair, yet!!

Off to Ikea,  E always goes to Warrington. After a while we noticed that there was road closure , accident, so we turned and went to Ikea Batley. However before we even got to the turn round point I realised how stressed I was, how exhausted and how unable I would be to get to Northampton when baby S arrived.

The trip on motorway was Ok, actually got up to 60mph, but did no overtaking. But this car is soo soo stressful to drive.. not at all confident.
At Ikea , the coffee table I planned to buy was not very large, looked like a child's piece of furniture! But I did manage to get the refund on the chair cover, within the 90 days... just!

When we got back to HB, Elsa took a taxi home as I was simply too tired and stressed to drive up the Keighley road with its possible hill starts. I did get back to Tod safely and collapsed with a large G&T,



Well I last wrote on Aug 26th ( or thereabouts). Since that time I have left my home in Todmorden and moved to a bungalow nr Hebden Bridge. 
This has been far more traumatic than I ever thought it would be ! I thought I would be "Off Air" , for about a week... but it has been over 2 weeks... so to catch up I'll write  blogs in date order... providing i have the time to do it all all should be on track again by the week end... Fingers Crossed!!!