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

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

Eliza writes:

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

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

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

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

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

Eliza xxx

Christina writes:

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

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

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

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

Hugs Chrissie xxx

,,,,,, AND NOW THE FULL SET ????

It seems to me that there are stages of MND when you need certain equipment,
It starts with a walking slick, if you have ALS as I do.
Eventually you require:... in no particular  order.......

• a wheel chair
• a hoist
• A special bed
• Help with cutting up food 
• A spoon to eat
• Someone to care for you.. this extends to help with even wiping your bottom !!!
• Breathing help  .. NIV
• Catheter
• A collar
• a peg

This seems to be the full kit for MND.

I have nearly all of these except the PEG.........  BUT....... I am going into hospital tomorrow to have an op on Wednesday , to have one fitted .. under full anaesthetic. 

So I will have full kit !  lucky me !!!

It is sad that this indicates  the march of MND. BUT It does progress, no matter how positive you try to be.

I have been diagnosed for 21 months now. and indeed started to limp 7 months before diagnosis. 

Does this mean the end is near??    I hope not. I have tried to have challenges along the way, The one I am busy with is getting the paintings ready for my October Exhibition.  It is to be called "PAINTINGS BY ONE OF THE 5000"

My next challenge is to plan my funeral..... watch this space....

But for now .. I'm due in Halifax at 4:00 tomorrow and my peg will be fitted on Wednesday..... Think of me...

HUG ME, I'VE GOT MND 

RECENTLY... THOUGHTS AND HAPPENINGS.

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

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

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

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

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

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

HUG ME , I'VE GOT MND

N.I.V... MY VISIT TO ST JAMES

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

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

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

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

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

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

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

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

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

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

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

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

HUG ME, I'VE GOT MND

PS SOME OF MY PAINTINGS

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

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

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

HUG ME, I'VE GOT MND

A SPECIAL DISABLED TOILET !

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



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

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

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

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

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

HUG ME, I'VE GOT MND

BREATHING ANXIETIES

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

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

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

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

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

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

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

HUG ME, I'VE GOT MND

MY TRIP TO WHITBY

A few times I have been asked what I would like to do that is special.

 I thought of four things at the time. : To go to New York ( friends did promise to go with me but sadly it never materialized………….. and cant now , I guess); to have pink hair (I did have a rinse but it came out after only three washes); to have an ice cream maker………(Bought ! and a great success too !!); AND ….. to go to Whitby………….

So last Thursday my friends Richard and Anne picked me up in the car I had hired (£116 per day), with a lockdown for my wheelchair. We went north to Whitby!!

YEY!!!

It was sunny, and we took the scenic route (But as everyone in a wheelchair knows when you are in a vehicle every bump matters !!.. )………but that apart.. . We arrived and it seemed even hotter. Seagulls called and you just knew you were by the sea… WONDERFUL!!!

Richard, who, when he gets an idea is rather like a terrier, decided I should have a trip in a boat!

I looked and just knew this would be impossible. I would need to be carried down steps, lifted over the edge of the boat and then sit on a bench… all impossible … eventually he simply had to believe me !

Then, about 3:00 by this time, we went to The Magpie for Fish and chips. Exactly what i desired.. We ate them by the bandstand and then sat in the sun. I had two conversations re wheelchairs with people who admired mine. One was with a girls’ mother. The girl, very white, spends her days on her hospital bed as it’s the only place she is comfy. Her local authority doesn’t provide tilt in space which is what she needs. I thought my chair was basic, but compared to hers it is mega high standard … how sad that a young woman stays in her bed because it is too painful to go out………

As my first physio said, it’s the creaky gate that gets the oil!!

 I said to the mum perhaps it might be an idea to pester her OT and physio………….. I guess that I’ll never know.

After our lunch we went onto the pier, but there are steps towards the end bit and thus no wheelchair access.

We sat in the glorious sun, sea gull cried as they wheeled around ……… utter bliss.

Anne and Richard afterthe Fish and Chips

As I get more ill it’s the simple things that give me most pleasure.

Then a trip to the church and the Abbey. The church was closed which was such a shame. I knew that David Smith, now Canon David Smith , our former vicar in Yarm, had been in charge there.. And I wondered if he still was… I wanted to surprise him. I found out later that he hadn’t retired and was still there but we didn’t meet up, as the church was closed. …….What a shame. ………..On to the Abbey. Well signed for disabled  BUT to get to the Abbey, after the easy entrance lift, you had to jiggityjog around the perimeter and then I couldn’t find an actual entrance for me in wheel chair!!!!!! Anne and I just laughed at the poor access for disabled people.

Me at the Abbey

We left and went to visit Richards’s sister in Guisborough.  When we left we drove past the best ever view of  Roseberry Topping. I have fond memories of Roseberry Topping. Each morning as I came down Gypsy Lane, on the way to school at Swans Corner,  I would see it straight ahead of me.  Also memories of  climbs up there. Two specially memorable.. Taking yr 6 up ( I worked at Nunthorpe Primary) and Simon the other teacher hurt his back. I had 60 children to manage and had to dial 999 for help. Also my first ever trip up on New Years day.. What a mistake ! Climbing without water and with a hangover, boy did I feel rough!!

We continued on to Yarm. I said to turn too soon and ended going up Ormsby Bank not Gypsy Lane so thus didn’t see Nunthorpe Primary at Swans corner. I then didn’t remember the route, but knew the post code of where we were going (to see my former neighbours)  so SAT NAV was engaged !

We arrived at Yarm and drove up at my neighbours... Christine and Terry. It was wonderful to see them. They had prepared a tea/ supper of sandwiches and cakes and some fizzy wine. We chatted about Whitby.. (Sometimes people find it difficult to get to the nitty-gritty of the meeting. I hadn’t seen them for many years and was now very ill, but this was obviously difficult for them to tackle.) We eventually really  talked and all was well. We mentioned things that we had shared: Chrissie playing with their boys in the sand pit; my husband helping to lay the patio .. and it still was there; our Laylandii hedge which still existed and still well trimmed as we left it; the removal of my pink rose hedge at the front (planted in memory of Eleanor), how I fed their baby and sent Christine to bed as she felt so ill,……. …………. And many, many other things.

It was wonderful to see these friends with which I had shared so much.. but funny that Richard eventually asked where I had lived…… NEXT DOOR RICHARD !!! 

My home in Yarm was large by comparison to mine now. I lost a lot of money when my husband and I separated. We valued the house and I paid his half and took out a huge mortgage… but by the time I sold to move to Tod house prices had fallen and I lost a lot.

 But that is history.

Me with Christine and Terry

I got home at 11:30 pm !! I was so excited from such a super day out that I couldn’t settle. I had a glass of wine and some cups of tea, …………… then bed.

Having slept well on my back for the two preceding nights thought I would have another good one…………. But this wasn’t to happen.

Sleep and bed are becoming such a stressful time for me.

……… and that will be my next blog,……………… I think……….

HUG ME , I'VE GOT MND 

TO PEG OR NOT TO PEG !!

For the last month my breathing difficulties have increased. I can no longer lay flat. In the last week I have had terrifying incidents of not being able to breathe when turned in the night, ( every 3 hrs to stop pain).Three days ago , just turning I had to gasp for air. Now, part of this was needing air, and then there was panic.. the situation lasted for 35mins before I could calmly breathe.
On Friday last I had the thing on  my finger, with recorder, to do overnight sats..I do hope it worked.. this is what I wrote when the recorder was returned\\\;...................

TO WHOM IT MAY CONCERN:

I did this test on Friday 12 July. As I have gel nails I felt it appropriate to place the finger monitor around my toe nail, where there is no nail varnish.

When the unit was switched on it flashed “L” .So ,realising this wasn’t working as it should, I then had it on the correct finger, according to the instructions.

As Dr Thomas , at clinic, has always done the finger monitor on a gelled nail, I do hope this has worked !

If you wish me to repeat it, because: I put it on my toe first; or the gel needs to come off, please do say. However, should I need to repeat it, please can you let me know as quickly as possible as I am having significant trouble with breathing. This happens when I am lying flat, when I am sitting and lean forward or to the side. It can also happen on other occasions, even just when I’m sitting.

I do hope I get a response soon as I am very frightened and even fear going to bed. I mostly lose my breath when I am in bed, thus I am not sleeping well and wake with headaches.

Thank you

So you get the picture... except for two things  1. I wake up dizzy also and 2. My nails are a lovely purple shade    !!!!

So having discussed PEGs with:   Prof Shaw in Sheffield; Rachael, the consultant at Overgate Hospice; and more recently my Speech Therapist; and dietitian  I agreed that it would be the correct measure to have a PEG .

The PEG would be: because my breathing is getting worse and a crisis intervention would be to be avoided, also: it would be used for giving me extra fluids ( drinking the amounts of liquid I need with a catheter is very draining ) and to take my meds as liquid:: and finally I would be able to have a feed breakfast.
Breakfast is a real problem.. I cant eat cereal or bread... Ive had eggs and sometimes can have bacon... but it depends on how it is cooked.... and that depends on which carer I have...........

So armed with all this as a background, I met the    today . I was told  Gastroenterologist  by the Gastroenterologist I would be able to have it soon, and that it would be done under a local anaesthetic with an intravenous sedative.

Jokingly I said  can I have a large dose of sedative as I didn't fancy swallowing a tube... this was met with a ... the anaesthetists   will decide  how much you need based on weight etc !! What a humourless man !!

Then I asked how would I manage with two tubes in stomach with the hoist belt    .    I WAS TOLD I WOULD HAVE TO BE VERY CAREFUL !!!....
NOT VERY HELPFUL !!

So here we are : Me agreeing to have PEG with a local aesthetic and him agreeing to do it .
I then asked what would be my position for the op. On your Back... was his response.
But I cant breathe when on my back ............

The procedure only takes 20mins...

I CANT COPE FOR EVEN TWO MINS,   SAID I.

BUT IT ONLY TAKES 20 MINS,  HE SAID.................

BUT I  CANT EVEN TAKE 2 MINS ,,SAID I..............

This conversation continued .

In the end it was decided that I will have the op but under anaesthetic. The  will be able to organise my breathing .

The op will take place in the next 6 to 8 weeks (Hopefully!!) But it does depend on getting a space in the planned ops , ie to get a theatre space.

BUT as this time passes my breathing gets worse and thus the op gets more tricky... conundrum , isn't it !!!


HUG ME , IVE GOT MND

GLASTO THE FESTIVAL 3.................ESPECIALLY FOR PEOPLE WITH MND

II heard of my diagnosis at the beginning of December 2011...

It was on a routine visit to my GP re mu Thyroid levels.... It was Friday evening, late. I had no-one with me... my GP said she had had the results of my MRI and electromyography tests and it was confirmed that I had MND. She gave me a print out of info re MND which said that life expectancy was 2 to 3 yrs ...
How horrified was I .
I decided to wait til the Monday morn and ring the neurologist... clearly he was horrified that I had been told in this manner...
He then made an appointment for approx 12 days time,
I decided to use the time t think about my future with MND and to google as much info as I could.
Fully armed with info and a plan for my future ,I went to see the neurologist.
He was kindly and a support plan was put into place immediately... however. as Christmas was coming up this didn't swing into action till Jan. I did , however feel supported and knew that this time of thinking was good.
 It was only then that I told my dear neighbours, then my very best friends and eventually my girls ..........of the diagnosis...............
So how did I cope?......
I decided that I would try to live my life as I had done. always. I recognised immediately that my life would involve having carers eventually, and \I hoped that they would take over the mundane  and difficult tasks that would use my energy, allowing the special events in my life to still occur.
 Of these painting would be a priority.. It is................ and I still do it.. I have an exhibition of my work in October this year........
I had a wish to go to the island in the Bahamas , where I lived when I was a child........... but soon it became obivious that this would be impossible.
My next wish was to go to New York...... my friends said they would go with me......... but this didn't happen........... sadly.................
 my next two wishes were to go to Glasto 2013 (especially when I knew the Stones were playing !) and to go to Whitby via Yarm (where I used to live).

So to Glasto .......... any trip like this takes planning. I hired a big enough car to take myself in wheel chair and all the equipment. This included  a tent, hoist, commode and luggage. The luggage included yellow bags, dressings, scissors, bedding, warm clothes ( I'm always cold ), tena lady, gloves and all the normal stuff like torches...
 I had organised that a hospital bed would be delivered to the site.
I must admit that the people on the disabled site were of a great help. (Lots of people on this site hire vehicles.. they are probably people with walking difficulties rather than people like me , and you, who cant weight bare and utterly rely on a chair. ) OH I organised that our tent would have electricity, IE to charge chair during the night and the hoist during the day and also to power the bed..

So planning................. is of the essence,,,,,,,,,,,,,

Also the choice of carer is important.... I had a choice of two........... the one I chose was a nurse (daughter of the woman I always have gone to Glasto with). I knew she would be able to care but wouldn't be phased by the enormity of \Glasto ,as she had been there before.
My other possible carer would have been great as a carer............ but , as she hadn't ever been to Glasto, i feel  would have been overawed by the whole place, by the sleeping in a tent, and by all the practical adaptations that have to be made in such a situation.

I think its important not to cling to your carer in outing situations. Thus after breakfast and dressing me my carer went off... returning at 2;:00 so that we could go to the Pyramid by 3:00.
There I stayed till midnight .. \My carer discreetly emptied my catheter.. I was surprised that people didn't stare.. She kept me in water and food.

It was  a great shame to me that I couldn't mooch around the site as I always had done... but this was too difficult.. The roads//tracks were so rutted that travelling in a wheel chair was mega uncomfortable........... so you do have to make compromises.

HOWEVER  I was only too happy to be on the site and to see some of the bands... especially The Rolling Stones.

So you see ,you can do special things with planning and with an element of compromise..
 its sad that compromise is past of our lives , but sadly it is.

I do hope, like me, you are able, want to, do things that others say are soooooooooooooooooooo difficult........ THEY NEEDN'T BE.

HUG ME , I'VE GOT MND

GLASTO.. THE FESTIVAL FROM SOMEONE WHO HAS MND....... PART 2 (MY RUN-DOWN OF THE MUSIC)

OK! just to explain the title... I'm writing this Blog as a woman with MND, but also as a woman who lives a life.. so you'll get both here, the MND perspective and the festival goer perspective.

So the first dreadful night. When I hired the hospital bed it couldn't be delivered with a mattress because of (yet again) health and safety restricticions !!!!. I could get one off them but it would be expensive. SO.... I bought an inexpensive one from Argos ( Knowing Sweetie Pie, my grand daughter, would be on it when she visited)  This was a mistake... I could feel every spring when I did eventually get into bed...BUT  getting into bed. by now it was dark and we had little torch light.. Elsa has used a standing hoist but not the same one... so i gave her the 3min course on the hoist.... BUT  nothing could prepare either of us hoisting on grass!

So morning... I didn't want to spoil Glasto for my friends... so, leaving me with tea and a bacon sandwich , off they went to suss out the whole scene.

At 2 we got together and set off for the pyramid stage.

I had hoped to meander amongst the other stages and shops as ever... but one journey to the pyramid indicted that this would be impossible..

You see ,this a farm. Farms use tractors. Tractors leave rutts....wheel chairs on ruts go BUMP BUMP BUMP...... and it is very uncomfortable....  believe me.

But I got on the the viewing platform for the bands.....

Here is my three day run-down of all the music I saw...

FRIDAY

3:30  RITA ORA... Amazing !!! dressed in red.. I didn't understand why she wasn't higher up the performers list.

5:00 PROFESSOR GREEN.. what a waste of space !!

6:30 THE VACCINES... had never heard of them ( My problem ?) Inoffensive but that's all I can say!

8:30  DIZZEE RASCAL    Amazing!!!   He got the whole enormous audience, on his side and we all whooped away !!! YEY !!!!

10:30 ARCTIC MONKEYS... OH dear !!! I thought I was going to see Snow Patrol !! get the link.,. coldnesss.!!!! and Arctic Monkeys didn't do it for me !

SATURDAY

3:30  BEN HOWARD....  delightful !!

5:30 ELVIS COSTELLO...   well it was him and a good performance

7:00  PRIMAL SCREAM... By now, the whole of the Pyramid area was filling . the crowds were massive.. We were were all waiting for the Rolling Stones... Primal Scream were as they are, but the audience didn't please them . We didn't respond to their many requests to "Make some noise"... the lead singer seemed to get more and more frustrated and eventually said "Come on you Fuckers, make some noise "! Well after that who would..????     Not me !

9:30  THE ROLLING STONES... A beginning number Jumping Jack Flash with lots of fireworks... Lots of older tracks... but the BBC joined later and I don't feel the TV viewer got the best of the performance. I was electrified and the disappointment for me was that "Hey, You, Get Off My Cloud" was missed off the set. The whole experience of seeing the Stones was phenomenal for  me. It was a main thrill of Glasto with MND.

 And yes, unless ALL The Beatles reform !!!!then I wont go again.. this was my last Glasto.. after 12 yrs of going ... AMAZING !

SUNDAY 

3:45  KENNY ROGERS...  I arrived when the crowds were thick for Kenny. It was amazing .I simply said excuse me and the people parted.... like the Red Sea. This is soooo Glasto. 

I have never seen a fight or unpleasantness.. OK' people get drunk and/ or have too many drugs but they simply seem to sleep and /or just be happy. As I was getting through the crowd, people said excuse me to me ! !!!and they parted like the Red Sea ! eg    At one point,  a guy was sleeping and in the way, his mate kicked him ,and said get out of the way for the lady. He moved immediately . 

What kindness, what courtesy... 

I was touched. 

Sorry but,  this is supposed to be a commentary on Kenny Rogers.. 

Well, it seems traditional on Sunday afternoons at Glasto ,that you have a Kenny type person. Families sit down and chill. BUT this year plenty of families sat together and there were many standing... He was  sooo well received. Simply delightful with lots of one liners........................ sooo good. And I didn't expect to be saying this ! WONDERFUL 

5:30 VAMPIRE WEEKEND...  for me, unmemorable.. think I was chatting and eating and having the only pint of cider of the weekend!!!!!!!!....

7:45 NICK CAVE AND THE BAD SEEDS... Oh dear !  Can't say anything positive .because, I just don't like songs about death and crudity.!!!!!. but it seems, the very few do ! However there was great sigh of relief as they ended , ie from Anne and and I .. and the THEN he had the audacity to come back on for an encore !! And no-one had shouted for one. Anne and I simply looked at each other and said .. OH No !! Even the Security said.. surely they wont be back again,, and they were young.. so it just wasn't me !!!

9:45 MUMFORD AND SONS   the band I had looked forward to ,...... apart from the Stones,..... all weekend.... but 30 mins prior to their performance I started to feel very ill .I couldn't get my breath. I was soooo cold despite 2 jumpers, a thermal vest, a Tee shirt, a coat 2 blankets and a cagoule type cover-all. Basically I had been wearing Tena Lady pants all the time, as \I knew that if I were to need the loo when on the viewing platform , there would be no time to get back to tent and the commode.. BUT Tena Lady don't allow you to open your bowels.. Urine is OK but there is no space for the other.. I had had pains from Saturday but now when I really really wanted to be at the very end... No way ... we had to go back to the tent. I was hoisted onto the commode.. OH Joy, I went . I said Io Anne and Elsa , do go back and watch the end... But they valiantly stayed with me. We heard the end of the concert from our field and drank some wine....

This, in part, may seen negative.. ie re music... but it e

was brill just to be there , listening topeeeeeople.. I know that whilst I dont like eaxh band , it dimply doesny matter, basically Im ok for my values and I enjoyedevery moment of glasro s013

PART 3 HOW TO MANAGE GLASTO WHEN YOU HAVE MND... HOT TIPS !

HUG ME , I'VE GOT MND

GLASTO.. THE FESTIVAL FROM THE PERSPECTIVE OF SOMEONE WITH MND, PART 1

Ok just to explain the title... I'm writing this Blog as a woman with MND, but also as a woman who lives a life.. so you'll get both here the MND perspective and the festival goer persective.

We were supposed to set off at 10:00.. Thursday 27th

I got my night carer to get me up early, at 6:00, to shower and thus have maximum cleanliness for the weekend. I was so excited, I had gone to bed at 2:00...... so was shattered before I started !  But the adrenaline kicked in, and pampered in my Jo Malone I was resting in my riser chair in dressing gown when morning carers arrived at 8:00. I had a small breakfast , dressed and then waited.
10:00o'clock came and I was waiting by the window. My carer was supposed to go but didn't want to leave me.. eventually she had to go at 10:25 to get to her next client and as she went....... the big vehicle arrived.

Richard looked at the actual amount of luggage.. 2 bags ( containing spare clothes but the essentials like: Tena Lady (more later) , and all the bags, tubes, creams, yellow bags and gloves etc,ie  all that one with MND (and diagnosed for 19 months  needs)   also a commode, a standing hoist, mattress for bed , duvet and pillow(never before taken camping before... but this time its different), box of red wine (you aren't allowed glass bottles onto the site).. and no... I didn't take a Teddy !!!

Well it all got loaded, including me in wheelchair.. But no trip is simple.

We first stopped to drop off Jerry dog in Gloucester and Richards bike, he would be going back to stay with his sister in law and be with the doggie..... on to Bromsgrove where cups of tea were provided and we collected Elsa, Anne's daughter who was to be my carer. Elsa is a nurse in ITU and proved to be a wonderful excellent kind caring carer.. but did she blanch when I said,  I do have a DNR ( well, you have to, don't you ?!!!)... she works in the heart ITU..... ? Anyway at least she knew the score.

So we get to theGlasto signs for multicoloured gates.
 I was certain we needed yellow gate but just before then came the red, which said disabled. It took us 15 mins to do the circuit and get out of the circus of the red gate and back in through the yellow gate.

so now all set for simple drive up ! BUT I forgot to say that though we had a vehicle pass, Richard had no ticket, after all he was going back to cycle and look after Jerry dog... OH Dear.. we were sent from pillar to post, eventually a call to our Eavis contact  got us through  ! PHEW!!!

By this time I'm so so shattered and so so shaken as the vehicle bounces everyone ,but in a wheel chair you get a double bounce !!!

OH, DID I SAY IT WAS RAINING ... oh dear Glasto weather..... ?????

On site we were welcomed  with Oh its your bed ( I had had a hospital bed delivered) . The tent went up... well it must have but I was facing the wrong way so didn't see this happen . I saw increasing  rain !

So, like a bride being carried over the threshold, I was eventually let out ( backwards) from the vehicle. ( Sorry to this day don't know what it was except it was largish, grey and rattled!).

The tent was borrowed. It was one of those with semicircle poles and in three sections. One third to sleeping ( two sections), and two thirds to live in... but this area didn't have ground sheet. Anne and Elsa were in one section and my bed poked out from the bed area into the living area.. it was cold.. a first night... What would the health and Safety mob say as we wheeled across the grass in the semi darkness (torch not bright\) with me on standing hoist..... to wake for Friday and the real start of \glasto...

I craved a good nights sleep... but... that was when I found the inexpensive mattress from Argos was inexpensive for a reason... so thin !!

There began a first night of mega discomfort... But a first night looking forward to music and the fantasy that is Glasto...

AND the weather forcast said thatrain would stop at midnight... BUT it stopped at 11:30... an omen ???!!!!

to be continued................

HUG ME , I'VE GOT MND

THE DAY BEFORE I GO TO GLASTO

My friend Laura had borrowed my cases.. So I panicked that I didn't have a case ! (I had given away all other cases when I downsized, realising that I wouldn't be going on any/many? more hols).

 Now you say why didn't you simply text Laura... well she has mob probs and is waiting for her partner to up-grade her phone, then she will have a good mob. BUT this wont happen for about a month.. so until then I contact Laura via Jess... so last night I txted Jess.. "Please remind Laura to bring bags when she comes tomorrow"  I got a response that Laura was in bed ... ill. So this morn, still without bags, I sent txt to Jess... How is \Laura.. a friend will collect bags if she is still unwell...

No response... My anxiety rose.

Sharon , my support worker, who is very laid back, tried to calm me by saying that we could make a list.

No I said, the way I pack is to go through the day deciding what I need for each part. But on this occasion we will also need to make a list of those things that are to be used then put in last thing... eg night stand for catheter...

So I decide at least I can do meds... put six of each pill in a box for night or day. It was then that I found I didn't have enough of some meds as they had been changed.

So I rang Dr and asked if meds were due to be delivered.. Ask the pharmacy... Rang pharmacy.. explain I'm short and about to go away... why? Where.. Glasto... wow ! ( Ive taught one of the assistants in the pharmacy and the daughters of another, so they know me... OK we will send them up today..

Richard arrives with hire car/van. I become more anxious when I say that hoist needs to be available in case I need the bathroom. Oh it's OK he says ,you'll just got off with Anne.. Ah ! I now realise, and this is what stresses me, that they don't exactly realise the extent of my disablement !! OH Dear!!

Physio arrives 30mins early and starts to teach Sharon how to massage my feet.. (Great but I know that if she stays for the whole time the my lunch of egg and waffles wont be cooked.. and I had only a few strawberries for breakfast as the toast was to difficult to eat..... and I was getting hungry !

Anyway few minutes later as we are deep in our massage lesson and I am in fits giving points for each person... my mate Barry arrives. He makes coffee and then watches entranced.

The lesson over Physio and Sharon depart. Barry makes me a lunch of cheese tomato and crackers and we have a chat.

2:00o'colck and Laura should arrive... Panic now truly rising !!!  But a few minutes later she arrives ... WITH BAGS !!!

OH I for got to say that the man to mend bed should have arrived by this time... so no clothes could be laid out... Laura had a coffee.... me a glass of wine... the stress was about to show. Just at the end of the wine the man from Yorkshire Care arrived. It was an easy job to fix... the motors had gone... WHY? Ive only had the bed about two or three months !!

Anyway bed fixed, Laura followed my instructions and most of the packing was completed !

Sharon arrived for visit two. There she said , I told you all would be well !!!!So the next hour or two was spent watching news,talking to my girls and answering texts.

I have had so many texts from friends wishing me well for Glasto... it has be amazing. Sharon commented, Is there no-one in West Yorks who doesn't know that you're going ? !!!!

I ate some dinner and am drinking red wine too. I now have to finish off the list with Sarah, night Carer and also shower... the last till Monday !!

There must be something I have left out... this was a truly manic day... but I hope you get the taste of my day.

My breathing has become worse as the day has gone on... But , Hey !, that's living with MND !

( Sorry if the garammar in this Blog is off no time to draft.... I'm finishing packing, I'm off to Glasto tomorrow you know !!!!!

HUG ME, I'VE GOT MND

C ARERS

People are all different, even people doing the same job.
Well I already knew this, from the differing personalities that were teachers in my schools.

So why does it  so surprise me that carers can be so different.

I have  a super team of four from Scope. But they are all so different and have such differing interests and skills. I get on with them all in different ways. They are all kind, all try to get basic tasks like managing the hoist correct and all , I feel, have my best interests at heart.

One of them has young children,and is most definitely someone who enjoys house work. eg She loves ironing and does it beautifully.

The second is very shy and lacks some confidence. It is so clear that she wants to be perfect in all she does. She takes her time to be just right and asks frequently to check that things are done as I would wish.

Number three is more of a clown. ...  BUT...She uses her common sense and is so funny. She is a speedy worker and even managed to clean all the windows in record time... she loves music eg Radio 2 and sings along.

Number four, today's carer,, has done the same art course as me , but she went on to complete to degree level. We have lots of art-related things to talk about and she doesn't mind doing mucky jobs like cleaning my brushes. This so helps, as it takes me an afternoon and I end up wet and making the bathroom filthy ( I can't reach the sink).

So differing personalities all adding value to my care.

I was so worried, when dear Laura left, as to whom would replace her, but this team seem great AND I still see Laura every Wednesday... so care wise.. fingers crossed... I feel Ive got it made.

HUG ME, I'VE GOT MND

CONTINUING CARE ASSESSMENT

For some time now the NHS has picked up the cost of my night carers.. ie 60% of the care package budget.
At the review,a few weeks ago, the NHS agreed to pay 80% 0f the total cost and also agreed that another assessment would take place very soon. Indeed it was soon, 10days later.

At a previous review I sat with my Social Worker, a member of Scope staff and a man do with funding. I was very annoyed with the man as he came in and sat behind me... I eventually moved. But how rude to sit behind someone in a wheel chair.. well to sit behind anyone actually, ..........well except perhaps at the pictures !
At that meeting 2 out of 3 people wanted me to sign a  care plan off, which basically meant that I would get 1/2 hr extra time !! No B....... Way !!!

It was difficult for me, three against one so I determined that at any future meeting I would have some support.

Thus it was that my lounge was rearranged to make space for at least 7 people ! I was expecting the NHS person, the social worker, physio ( at my my request) , my friend John and my carer !

It couldn't have been a different meeting. All the people were very supportive as we filled in the long document. It did get to one point about communication... I communicate well... but felt the need to explain to the NHS woman that though I appear bright and articulate inside, I'm actually very frightened. Being a good communicator doesn't mean that you are glossing over feelings but I thought they may feel that I was just fine !Anyway at this point I broke down. My breathing and voice came out in gasps. The group showed nothing but kindness and support.

Then I composed myself, and eventually we got to the section on mental health... I said I had depression ... yes said NHS woman, you are bound to be depressed with this diagnosis... No, said I, I have a long term diagnosis... she was surprised and that got me another high level of need. In the end there were 5 high levels and though she has to take the info to the panel next week she said it would all be fine. I would have 100% NHS funding. In fact it means now I don't have to jump through hoops !
At an instant she increased my daily care by 1 1/2 hrs per day.

I feel this went well... but if only I had known I wouldn't have had to re-mortgage my house by so much.... but what the hell !! it now means that I can have any treats I wish and not worry about money.

I wonder how many of us with MND have continuous care... was it an ordeal for you? Was it difficult to get?

I feared the whole process, because every other step of the way has been so difficult and every step taken so long to get resolution............. But this was easy, and also means that I am now getting the care I need..... Unless the govt steps in !!!!!! Fingers crossed !!!

HUG ME , I'VE GOT MND

GLASTO... HERE I COME !!! ?

Glasto here I come...!!! It's taken a lot of planning.

For some people, facing a death, they wish to do extravagant things like going on the QE2. For me, my QE2, is to go to Glasto, one last time.

For the last 12 or so yrs I have gone... and loved every visit.
My first time was with Anne. She had gone the previous year with her husband Richard. He hated every moment and thus I was asked to go with her.
My very first time ... we went after school on the Friday and missed Coldplay we also had to leave on the Sunday afternoon.. I thunk we missed Rod Stewart... but I thought it was brilliant... and well worth the money.

We were both working, Anne was one of my staff... eventually I was retired and Anne got permission to have a day off from Govs. So Anne would arrive on the Fri afternoon, I had already set up camp, ... and she had to leave on the Sunday.

One yr I went alone... this was OK but not as much fun as with my friend.

Thereafter we went together, and as I had medication which required refrigeration, I was allowed to stay on the disabled site.

The disabled site is amazing. There  are two marquees. One for tea and coffee , chat, charging of wheelchairs and activities,   and another for complimentary medicine, such as massage.
There is also a proper shower.
It has always annoyed me that people who support those with the real disability have used this shower... I never have.

The site also has many volunteers who are so , so helpful.

So my plans.... amazingly, I had a dream, about a year ago ,that Michael Eavis knew of my condition and flew me by helicopter to the Pyramid stage to meet the Stones. This was long before anyone knew that the Stones were playing.

When I heard they were to appear I was overjoyed. Anne and I had decided that to get tickets in October was dodgy as I didn't know how my health would be.
Every year I have been the one to get the tickets... using Internet and endless phone calls.... It has always worked... but this year I decided we should use her link with the Eavis family... I'm not going to say how... but it worked and we have tickets.

THE PLANNING. Well this was mega.. First I had to organise transport.I searched the web and found I could get a large vehicle which had lock down for the wheel chair for £624 .It was booked.I needed space to carry a hoist, a commode and me in a wheel chair. I noted that I also need a bed. I have rented one for £225. It will be delivered and collected from the site. I also have to remember night bags and the holder, a spare day bag and all meds....
Keeping dry has been an issue, so I have bought a coverall , it covers my whole body including my feet. I will need to take clothes for warm and cold weather... the list is endless... but, also includes a box of red wine !!

My daughter ,Christina, contacted , Make a Wish, to see if I could meet Mick Jagger... apparently they only deal with children.. she then contacted Michael Eavis, but apparently the Pyramid stage is closed to all headliners... even those with MND.

So Ive spent a fortune. BUT it is a so very special event for me ! Wish me luck! I'm apprehensive now but also very very excited.. I'm following my dream.. paying for it , but hey, It's still a less expensive than the QE2 !!!

The Glasto team for disabled people have been amazing.. we have been given a pass for the transport to access the site and also there will be electricity in our tent.

This is my last big trip... I'm going to really enjoy it..

Please hope there will be no rain.!


HUG ME , I'VE GOT MND

MUESLI IS OFF !!

OK , It has been weeks since I last Blogged.
A big thank you to all those who kindly contacted me to check if I was OK.

I am OK, but the MND is marching on and I simply don't seem to have had time to fit in this writing. Shame I hear you say !!!, well some of you.

Re my Blog.... I had built up a good set of daily readers and this has definitely diminished. So please do tell your friends that I am back.

Such a lot has happened. and so here is my news in brief..

The very, very. best thing is, that, I am having a new wheelchair... I have a benefactor... and I am sure s/he would not wish me to go into the detail. (I shall refer to my benefactor from now on as he , as its less to type !)In fact he is not actually buying the wheel chair, (£7,500).My benefactor is buying one of my paintings! I have to send images and sizes of some and he will choose....

Perhaps this one?

Or this one... it's very large.....

This person also collects art. So if he hangs my work, it will be alongside prestigious artist !!
How wonderful is that? I feel so very fortunate.

The chair is ordered and should arrive in 4/5 weeks time.
Its purple... I'll say no more, but, be sure when it arrives you will be inundated with photos!

As for my health...., I'm being measured for a collar next Tuesday and should be going into Hx Hospital soon to have my oxygen levels measured overnight. I also have the first appointment with the gastroenterologist re a PEG, ( feeding tube).

So you can gather for yourself how my health is.

Other BIG  news is that ,
I am going to Glasto ! More tomorrow !

Oh and the title., Muesli is off ......ie,the menu.. I had a major choking issue yesterday and struggled to breathe for ages.. then started shaking with the shock. There are other things that I have found I can't eat either lettuce, crispy bacon and a few other things.

Ive tried pink hair (but it washed out), and I bought an ice-cream maker. Wow, how lovely is the ice cream... and good,......... just the pure ingredients that I know have but in.

My care plan eventually came into being.. the transfer from the emergency team to the Scope team has been difficult. Getting to know new people and having more freedom as I have support , and can , for example , have a coffee whenever I wish, or go to the bathroom.
It's sort of like being let out of prison.

So that is a short version of my life in the last three weeks. I'm sorry the detail is missing but I will write more fluently in future.


HUG ME , IVE GOT MND.

GOODBYE LITTLEGREEN CAR... I LOVED YOU... NOT !

Today I became a non car driver.
After being a driver for 47 yrs, its a big loss.
I have given up my Motability car. However Calderdale Volunteer Transport seem to be able to take me to anywhere I wish . They are kind and careful. With them,  I can sit in my chair and go wherever I book.
So far I have gone to Rugby ( for Oliver's christening, and to The Works at Sowerby Bridge for lunch and drinks with Samaritans. I have booked a trip to Tod for the AGM of the gallery next week and also a trip to Halifax.)
Each trip costs , on average , £30,. BUT I will now get my DLA of £55 per week to pay for these. Formerly it went towards the car , so I never did see it.
But, indeed , it is sad, after driving for 47 yrs , to not have access to a car. In fact , though I always had access to a car, I was 34 before I had my very own first car. I chose a Bluebell Blue, Citroen 2CV. Its number plate was C22 UVN.   I wonder where it is now?
I had such fun with that car, which ended with my divorce. Its value went into the divorce settlement. I got the Citroen BX ( Anthracite Grey) and my husband the 2CV and the caravan ( an Avondale Leda).
My 2CV was sold to a nurse from a SCBU, ( Special Care Baby Unit).
 I know not where since. But 2CV's are renown for wearing their dents with pride... and with its simple engine, I expect somewhere it goes now.
The BX that I got was kept for 3 yrs, until the hand brake failed and it ran down the road into a wall. It was a write off !  I now engage gear when parking in hilly Calderdale ! (Well I used to , when I was a driver!!!!)
I passed my test at 18 despite having my first lesson on the 18th of Feb 1966, the day after my 17th birthday.
I took three tests. The first I failed on the Highway code. The question "Why are double white lines?" floored me. 2nd test I failed. Don't know why but the instructor said I was Brutonized... the chief tester being a Mr Bruton !! Third time I passed.
I went on a car Rally that afternoon. Mum and dad didn't know !!!! I used 5/- and put 2 gallons of petrol in the car. ( 5/- is 25p now!)
So it with mixed feelings that I am car less. But the car was a trouble always .( 8 visits from the RAC !!!)
The other reason is that the morphine is making me slower to respond. I don't think I would be safe for myself or other drivers.
 It is good to end my driving career with a no accident record...... well I mean proper accidents. I did have a few claims for backing into a large  stone , backing into a fence, backing into a bollard !!!

So my Little Green Car did me proud today..... it wouldn't start !!! How normal !!! And so it achieved a total of 9 RAC visits.... they had to come today. Paul from the RAC making his 3rd visit and on the cars last day !!! YEY !!!!!!

HUG ME, I'VE GOT MND

I NEED MORE / BETTER CARE

First a notice:

My laptop is poorly so I wont Blog again till its better!! Its off to laptop Drs tomorrow !

Now the Blog:

 The following is an extract from the  email that I sent to my social worker last night  . I thought it appropriate that you too have a copy..

 

Hi ,

Hope you had good weekend.

Mine was mixed.

I went to Samaritan gathering on Sat afternoon, I had a wonderful time , being “normal”.  Calderdale Vol transport providing mini bus. ( Very good care and service. ) (There are no taxis in Hebden Bridge which take wheel chair passengers )

I have,  reluctantly, decided to get rid of car as the morphine makes me somewhat slower to react, I lacking confidence as I feel I could be a danger to others and myself. This is very sad as I have been a driver since 17.

 

On Saturday night, my night sitter did not turn up. I needed the bathroom at 9 so called on my nearest available  friend, from Tod. She had to ask another person to give her a lift.

 

Thus , having gone to the bathroom, when carer didn't arrive promptly, I didn't worry. (J,has been late before)            When it got to 10:30 I began to worry. I decided to wait till 11:15..... (perhaps a mistake on my behalf )... 11:15 is when last bus arrives. 

No carer by then, so I decided to sleep in wheel chair.

Had I rung the agency at that point, they may well have got someone.... but whom... ??

At the very least it would be 12:30 by the time someone got here, and then I would need to explain how to treat me ( care plan not up to date), and I would get little sleep and would have been anxious and maybe in pain. (ie If I am not moved correctly ,.  NB I am unable to move myself ,  I am in considerable pain, which the morphine helps to eliminate, but not completely)

 

So I slept in wheel chair. Its now 9:25.pm . I have been here since 9:30 am  yesterday. 36hrs!!!!   I am shattered and my bottom is sore.

 

The SIT team were wonderful this morning and treated me so kindly. They put me in rise and recline chair to eat breakfast, and stayed to do lunch toilet visit. Thus, I did have 1 hr out of w.chair. I have great respect for the SIT team. They may make the odd mistake, but they always do their best, treat me with respect ,courtesy and kindness.And always turn up.)

 

 

I believe I need more care.

 

Please do take this to the panel on Wednesday. Thankyou.

 Yours sincerely ,     Nikki    (Woodman)

 

PS  I spoke to care agency this morning. They apologised. I expressed my view that I realised that J (planned carer ),should have contacted them should she be unable to arrive promptly, However should she or her family be unwell or in an accident I would not wish her penalised. However if this was not the case then she should be dealt with sternly.

 

PPS   Care Agency, have accused me of being too “particular” .My response was that I need a night carer who is suitably skilled, and with whom I would not be afraid. At the moment they have few  I believe this is a recruitment issue for ADVANTAGE, and not an issue of my being “particular”

Now to lighten the mood:

HUG ME, I'VE GOT MND 

 

MANY LOSSES

In the last few days and I have been too exhausted to write, sorry!

 For example, yesterday I had a total of 16 people through my door. Today,( a quiet day !!!!!), a mere 10 !!! 

So, I’m sure you understand my silence once again..

So.... the losses......

I had a phone call from a guy I haven’t actually ever met. His name is Roger. Roger is the brother of my friend Nicki. Nicki, I met in hospital at Sheffield. We shared award for 4 days. Nicki was my clone, in many ways . A teacher, same name, similar age... but Nicki had Bulbar MND. It meant that she could walk when I couldn’t,......... but couldn’t talk or swallow, when I could.

Together we made a perfect Nicola.

Though I didn’t know Nicki for long, it was our synchronicity that made us close. In truth I didn’t have too much contact, but I will never forget her.

So as you get to the end of these paragraphs, you will realise that Nicki has died, and that is why her brother, Roger rang.    

I am so sad and offer my deepest sympathies to Roger, and all the friends and family, of dear Nicki.

Today I had another sad letter, telling me of another death. The man who died was called Ken. He was nearly 90 and died of old age, not MND.

Ken was, sort of, a last link with my parents. Ken and Kay (his late wife) were best friends with mum and dad and used to meet up most Friday nights at The Speech House, Royal Forest of Dean. Dad and Ken both head teachers, Mum and Kay both teachers.

I send my deepest sympathies to the three children and, of course my love.

I have many funny happy memories of the Friday nights... especially when too much Whiskey was imbibed!!!

My other losses are to do with my MND.

I can no longer click my fingers on my left hand; I can’t easily lift a full cup of coffee.

And lastly, I made the phone call today to have my car taken back.

This too is a very sad loss. I have been a driver since I was 17.

So much sadness.

HUG ME, I’VE GOT MND

FEED-BACK

At last I have found the time to complete the feed back re my visit to the Hospital in Huddersfield.
 On a postcard, I could simply have ticked a box but then was given only a centimetre space in which to write any comments.
 I tried , several times, to complete the form on line. Eventually I contacted the survey agency and they sent me a correct link.

Until I had sent this survey in I felt it inappropriate to write about it. However as it is now winging its way through the ether I will share . I was asked forstly if a friend or relative were to go in to the hospital, would I rcommend it.



If the friend or relative was in good health I would probably be ambivalent re recommendation.

BUT as I have MND, and for anyone else who is unable to weight bare there are issues.

I need turning and nurses were surprised at this.

I asked for socks to be removed 6 times as I have a neuropathy, I was told, “just a minute". They never did remove socks.

When getting me into bed I needed a pillow, as when I lay flat, I have shortness of breath. Just a minute was a response!

I felt my specific needs were not understood or when they were explained were ignored, making me feel very frightened and fearful for my safety.

Whilst there was considerable fuss re covering my private parts there was rank inconsideration when I needed the commode. The hoist was used, after it was serviced! Then, when it was brought down it had dust on it. I was placed in the harness and placed on the commode without the harness being removed. I looked like a puppet. And how do I know this? Well, because I was placed in front of a mirror. I had no choice but to look at myself! This was an undignified thing to do to anyone and made me, once again, feel disregarded as a person.

A man came in and fastidiously cleaned the window ledge with a damp wipe. Others came in and wiped other bits. However no-one seemed to get into the corners of the room. The corner appeared to be dusty and cobwebby, though these may have been scratches in the paint-work.

The kindest people were the Consultant, his registrar, and the anaesthetist and the water jug lady who filled two glasses for me. (I had been asking for two glasses as I needed to drink and can't lift a jug, much less pour from it!)

I had ordered my medication into two bags. Those for night and those for morning. I also had one medication (an MAOI, about which no-one knew, and didn’t appear to find out).This requires refrigeration. EVENTUALLY it was put in a fridge. Much fuss was made re meds and having to list them. One bag was taken. I pointed out there were two. I was told all would be well. Sometime later someone returned and in a curt voice said there should be more meds than this! (Speechless!) The list was made and a copy given to me. It didn’t include the MAOI. So, I guess, my GP will think I don’t take them anymore!!(It's Ok, I'll tell her and show her this feedback, should the need arise.

So, all in all, I am not happy with my care at Huddersfield. I am however delighted that I suffered the lack of care to get the end result of the procedure.

I know that I will have to return to have my catheter changed in 3months. I am not looking forward to this.

So enough serious stuff... another Doctor !

HUG ME, I'VE GOT MND

I'VE COME TO FIND IT HELPFUL........

I've always found it helpful to write things down.
This action took a while to come to.

When I was younger, in my 20's.. I was hopeless at helping myself if I got in a state, and would rant or slam doors or bite my nails harder or shout or cry or............. !!!!!   .... well generally use a lot of energy and get absolutely nowhere!

I guess I have a volatile personality. I excused myself on the grounds that I was "artistic"... Actually, I now realise this was simply bullshit. I was allowing myself to behave in a puerile manner... and as a young adult this wasn't reasonable.

I guess it came with responsibilities of being a parent, that I realised I needed to be calmer, more in control...

I took to writing letters to address issues or to inform people of my arguments against the irritations I found. (I used to almost get tongue tied when angry.. You know, when you think back and say to yourself .... "I should have said this....... or that"   and then you get even more infuriated.

So I wrote these letters and then read and re-read them. Then, I would either tear them up into the tiniest pieces(like confetti) , or sometimes I would burn them. I found this a way of eliminating and calming my angst and any general rage.

Why do I have, did I have rage ? I guess it was a little to do with the nature nurture thing. Some part of it genes, and some to upbringing. Dad was very artistic and also very volatile. He would let rip like a firecracker. He often started a rant with "God bless my heart and soul....rant... rant...rant !!!! He never did learn to control his anger, he always let rip. And, it seemed to me, often Mum or I would be the butt of it.

Dad had issues re depression, was prescribed medication, but would never take it consistently, thus it never worked. I also remember once when had an appointment with a psychiatrist and it turned out that the Dr was younger than him, and more-over that the Dr was a WOMAN !!!!! Well he never did go back !

I too have a diagnosis of depression.. BUT I take my medication and I attend appointments. The services have improved over the years, I'm sure. I  find CBT beneficial. AND since being on a brilliant medication , for the last 8yrs, I am saved. My only difficult times now are when I am over-tired. But even then I do try to control any desire to rage.

Generally I found in my 40's and 50's, and indeed up untill 2yrs ago, I would write down issues. I have endless notebooks ! Through these years I also found simply writing lists... two columns   Positives / Negatives.... helped.

And now I have MND.
Something horrid and a real thing to rage against. But strangely , I don't. I simply accept that I have this horrid disease.
I am actually probably more calm than ever before in my life. This doesn't mean that I want to have MND, it doesn't mean I want to die earlier than I thought I would, it doesn't mean I don't fear death, it doesn't mean I am sad that I wouldnt see any more grandchildren born, it doesn't mean that I'm devastated at the thought of leaving my children and the effects that my death will have on them........

I do write still.  Here it is.
I have found so much solace in writing this Blog.
I have many readers ,85-100 per day. Some contact me directly, some on the blog, and many many people Tweet me...@1949NW .
The comments I receive are amazing. I seem to have a whole new set of friends/family. I gain such encouragement from these comments and I am becoming proud of this Blog, because so many people have said that I have encouraged them to fight and given them inspiration.

And yes I do fight,  By being calm about MND doesn't mean I don't fight. I am a single woman living alone and actually every day is a fight to manage my life.
 Most days I win, some days not.
I find accepting MND is not too hard ( its a fact, I have it !) .\
BUT it's the side effects eg..... having a sore bum from being in an uncomfortable wheel chair all day,...... having to have someone else  dry my intimate parts, because I cant hold a towel strongly,.... all this is hard to live with  .
I control this , not y raging, but by speaking out firmly but politely and also by writing.

I also escape the MND horrors by painting ( when I can ).

Having time to enjoy life ,while I can ,and not be regimented by caers visits, health visits etc........ is difficult.
I fear painting time is SO diminished.
If I had carers all of whom I could trust,  all would be so much improved.
 I don't have consistency, except from two of the night sitters , Laura and a few of the day care staff. The others I have to watch  or instruct, time and time again !

I sometimes wonder if it is I who is fussy, but actually I don't think so. I expect trained people to be handling my body.... I don't have to make best friends of them ( nicer if I do), but just the simple skills should be in place... so for example, my catheter tube wont be pulled, my leg garter isn't twisted, my clothes are smoothed, I'm not left hanging from the hoist too long whilst clothes are sorted...( even though I go through with them each morning !).

So ,you will see, if you have read to this bitter end. Writing does help me. Its one of the reasons I Blog. Its also a diary for my family to look back on in years to come....... I wonder if they will ?

I will ask Liza this evening. She is visiting with my grandchildren  for the weekend... I'm so looking forward to seeing them all. ( So don't expect a Blog tomorrow, I'll be playing or resting !!!!!)


HUG ME, I'VE GOT MND

FIRE !!!!

I've been having truly terrible problems with my feet.
Most of the day they are cold... this seems to happen lots when people have MND.

BUT ,especially in the night, they go hot... I mean HOT....excruciatingly HOT..... Like they are on FIRE! 
It starts with a prickle under my foot. Within minutes it becomes so very hot and the prickle becomes the blade of a hot knife.
The only way of cooling them is with wet flannels , opening a window and completely uncovering my legs to the knee.
It can take 30mins to reduce the temperature. In fact the night before last I had my night sitter cooling my feet 9 times. I was in agony.

So all the thoughts of fiery feet made me remember The Crazy World of Arthur Brown, and the track Fire.

This in turn reminded me of something that happened during Rag Week , when I was in the second year at college in Leicester.

My boyfriend ,John, was on the organising committee.He was at Leicester Uni and I was at college, we had known each other at school since the age of 11.

Crazy World were booked for the Ball.

At the end of his performance the committee took his head-dress and held it for a ransom.
I remember, he paid £5 to get it back. We all thought this was a small fortune , and how clever we were !!!

Bizarre...... what happens when you are young  !!!

HUG ME, I'VE GOT MND

EEEEEEK ! A MOUSE ? IN MY HOUSE ?????

Today Laura came , as she always does on a Wednesday, to do the cleaning and all the other bits of caring that she always does.

Today is, "Put out the re-cycling "  Day. She moved the bags out prior to emptying and prior to mopping floor.

Then she spotted it/them ! Mouse droppings !!!!

Now, I used to catch the mice that Meggie brought in, they were always alive ...... grrrrrrh !!! But I caught them by chasing around with the colander,trapping them (eventually), and taking them up to the field above the house.

Well, I say this is what I did... I did, except for once ,when she managed to bring in two on one rainy night. The first was dispatched into the field but the second, when I had caught it, was thrown through the kitchen window, quite a drop onto the pavement !!! Sorry mouse.... but I wasn't going to get wet again.

What I hadn't realised was that someone was walking up the pavement and the mouse dropped very close to him !! OOOps !!!

So when I say I did this once , I mean, I did only do it the once !!

Anyway back to the kitchen clean today. Laura reckons there were mouse droppings.. Me, I prefer to think it was a stray coffee ground or dried herb.

Much better for me to think this than have to formulate the action plan for catching a mouse with the colander from a wheel-chair !

My Beloved MEGGIE.. the Mouse Catcher

Re name... IT'S RAINING MICE   !!!

HUG ME, I'VE GOT MND