IN A WHEELCHAIR FOR LUCIAN FREUD

At last I have time to write about the adventures of last Thursday.
Last Thursday I went to London to see the Lucian Freud exhibition at the National Portrait Gallery. Lucian Freud with Francis Bacon and Auerbach, are my top three artists, so it was such a privilege to be able see this Exhibition. The exhibition will be in London, then goes to Washington DC. After that all the pictures will go back to their owners and probably won't ever be seen together again..... well certainly not for many many years. The texture, strength with such delicacy, of the images is stunning, overwhelming... do have a look on-line or do go if you get a chance.
For people with disability, your carer gets in free and there is a wheelchair loan system. The number to arrange this is on-line. The National Portrait Gallery has lifts to all floors, but they are not through lifts... you have to go up one, across a room up two etc.... but it's an old building so therefore acceptable. The restaurant serves good food, expensive, but the down-side is that it is very noisy.... so much for the gallery.

The fun started for me at 8:10, we were given a taxi from Tod to Hebden as the train is not accessible from Tod for disabled persons as there are steps.... The taxi which was provided had no ramps and the steps were high and narrow. So my journey started by being shoved up into the taxi ,and helped out of Taxi by the driver and a kind man at the station. Everything went well from then on as regards the trains.. people helped me on and off with ramps.... BUT  I found that I couldn't get out of the train seat! Thankyou to all the members oif the public who came to my aid.

So arrival at London.... get in Taxi and found I could only get out with extreme difficulty. We then arrived at the gallery, or thought we did... We asked which floor the Lucian Freud was on, only to be told that we were in the National Gallery (In a very snooty manner!)... well the buildings do adjoin!!. So off to the correct gallery, and lunch.

The pictures were wonderful.

Back to the train, by this time my bottom was aching , having been in the chair all day, and I was tired. Then we arrived at Kings Cross in Taxi. Fare £13, I planned to give the driver £15, and had £20 note in my hand. Trying to get out I was so weak I ended up flat on my back!!!! I was so thrilled that the Taxi driver ( from Walthamstow, daughter in Welwyn Gdn City),  just picked me up. I gave him the whole £20. He then gave me back £5 saying it was not problem, and to take care...... how kind was that. London Cabbies are amazing, helpful, kind. Bless then all. .. they were without exception amazingly helpful.


So train to Leeds... it was late into Leeds, so we were given a taxi all the way home to Tod...YEY!!!

What a day!!! Many thanks to Christine Chapman for sharing it with me and being so helpful and supportive.

As for my reflections on the day. I feel that I would like to do  a next trip alone, in an electric wheelchair... When you are with  a "carer" people dis you, and only talk to the carer (. " Does he take Sugar"!!!!!!)    This was not in any way Christines fault or the people who are paid to help... but more the general public. So I'm sure I would be ok on my own...

.... So the next adventure is...... Watch This Space!!!!!

HUG ME, I'VE GOT MND

DEAR BLOG READERS

I feel you all may be interested in my trip to London last Thursday when I visited the National Portrait Gallery to see the Lucien Freud Exhibition. There is so much to say as it was my first occasion when I spent the day in a wheel chair... and actually, this needs to be written about in more time than I have now.... but tomorrow I will reflect on my Blog all my thoughts on this and the effect on me as a person with MND.
However:
I have my eldest daughter Eliza, Andrea my son in law, and my Grandchildren staying with me... so you will understand, that this time is so so precious, that I mustn't spend ages at the computer....
Last evening they arrived after a long, long journey ( Friday night traffic north). The little ones were excited and we all went to bed at almost the same time. We shared  a take away curry.. the guy who delivered it was excited by my paintings, so came in to have look around... how lovely was that?.
A good nights sleep for me. But my granddaughter, Caterina, woke very early as she is used to a blackened-out room. Sleeping under the stars and then sunrise in my attic, meant she was confused and thought it was morning rather too early! So Liza started her day very early... oh the troubles of being a parent of a little one!! Still ,I guess many of us have all been there........
We visited the bungalow, ( joined by my  friend Maria),and I feel that it has their seal of approval. (So pleased about this).
Lunch at the Olive Branch, in Hebden Bridge. The service was slow, and sadly no ice-cream for dessert... and what else do children like??... ( and me!!).  So home for ice cream! YEY!!!
Andrea has helped me with issues surrounding the sorting of the problems of getting the adaptations sorted and has helped me to realise that  I need to get certain things clarified. Each part of the accessible homes team seem to be passing on issues to other parts of the team.. and nothing is coming together.. and it must!!! because there are issues  potentially/ actually steaming along for me as a person with MND. For example, I have had to have chairs swapped over today as I really couldn't get out of my normal seat...Basic and very sad!!!
This afternoon Tom and Iris arrived with toys, and the girls played together    .Lovely........... Caterina and Matteo also enjoyed seeing the rabbit and guinea pigs , and feeding them.
Then bath time. Lovely for grandma to be part of......
Dinner of pasta with sauce, made by Liza, washed up by Liza and Andrea .. and painting of the edges to tidy up the pictures I will be exhibiting from next Thursday.
A lovely day...............A happy mum , mum in law, and grandma .

HUG ME ,I'VE GOT MND

DAY AFTER BOOK GROUP

Was soooo tired after Book Group last night that I simply had to sleep and not Blog. The evening was great and apart from our book discussions my friends will either be at the opening of a-MAY-zing  or will be at the MND fundraiser,  or both!  Some people are kindly offering to make cakes too. Thankyou so much.


Difficult start to today, felt very low and depressed and talked to Christine about our trip to London tomorrow... was thinking of cancelling.... but Christine reassured me, and we are going! Have to be up at 7 (Hell) as have at Tod station by 8:10. But so looking forward to the Lucian Freud Exhibition... so hope all the planned help is in place!!!


Have made a decision today... will go for a car that can be adapted and have a hoist in the back... if my needs change, ( ie when I cant walk from driver seat to back of car) then Motability will take the car back and then I can think again about a Wheelchair Driver Car... or just decide to use taxis. Thank goodness that decision is made. To make it I had to balance need, money and time to produce an appropriate car. Feel sure I've made the right choice. It will probably be a Citroen Berlingo as they have big back doors... well lets face it, it's a van with windows!!!!!. Stylish !!!!


So, as I will be back so late from London, I won't Blog tomorrow.... but will be back on Friday. Until then:..


HUG ME, I'VE GOT MND

TRAINS

1st Train story:   I met a friend today. He visits every so often, and his attitude to MND is that it shouldn't even happen to criminals!! We always have a chat and I generally ask about his love-life, which never seems to get off the ground. He kept me interested today with two stories of recent blind dates. The first is sad, the second funny.   A week or two ago he had a date but had to travel by train. Sadly a young man chose to end his life by jumping into the path of the train. The train then became a crime scene .After 3 hrs the passengers were allowed off.( The poor train driver had had three such events in the last four weeks!) Imagine the difficulty of the man who ended his life and the on-going trauma of the driver.  OH, and my friend arrived for his date only to find she was plastered ! , having waited for 3 hrs!!! End of romance!!

2nd Train story.    The next blind date for my friend was to a dating event... unfortunately he had mis-read the info.... it was for over 50's!  So he arrived and was greeted by eight women and three men... all 60yrs old plus... (He is 30!!!)  So he made a quiet retreat, had a cigarette outside, whilst waiting for a taxi and was joined by two women who were very very chatty! He then said : I'm sorry I made a mistake, I didn't realise this was for  old women! ..... WOW!! The poor women faded into the background, most disgruntled, and my friends taxi arrived just in time to rescue him. Not the end of the story.. he rushed back, so pleased to get on a train... BUT  there was a 14 man fight,. he didn't get involved, but the police did! Yet again he was left sitting on a train which was a crime scene!

3rd Train story.... and to do with me. You can't get on the train from Tod if you want to go via Leeds, if you are disabled.... there are steps, lots of them. So the train line provide a taxi to the next available station where you are able to get on. (I think I may have told you this in relation to my trip to London on Thursday) SO... I rang up this morning to arrange the taxi, only to find that the systems are being changed as we speak! So now must ring tomorrow!!
(Why, oh why, isn't life simple!!!!)

HUG ME, I'VE GOT MND

A HARD DAY

Yep! a hard day, no particular reason , just everything was difficult. I seemed to drop anything I held and then had the frustration of leaning down, and not falling over to pick things up.


BUT I have finally scanned the final version of the poster for    "a-MAY-zing" , our exhibition which opens very shortly.
The opening event is on May 5th 6-8pm and on Sunday May 13th there will be a fundraiser at the gallery for mnd. "TEA for MND". If you don't have too far to travel, you will be very welcome at either or both.

HUG ME, I'VE GOT MND

THE COVEN

There are four of us... but we call ourselves the Coven.. like Macbeths witches... but four not three... all of us are single and have various reasons and patterns for coming together... we have all ended up as great supportive friends.Every two months or so we meet up for a meal. It was Marias turn... but her home has so many steps and no downstairs loo ..... I am not able to go there,,, so Liz hosted but Maria cooked, (well Jack, her son, cooked  most of the meal ,and they kindly walked it down to Lizs home. Liz has loo downstairs and flat access. 
It was a lovely evening, good food , lots of bubbles and a Taxi ,,,,,,so no problems of a driver! Yey!!!


What else did I do today? Well I slept till 10:15 when the phone rang. I chose not to answer it, and snoozed for another hour. I then did some painting, on and off all day. Don't think it's a great work, but very cathartic to just apply paint and the brilliant colours,
I'm now catching up on The Voice... How disappointing for half of the people concerned, they will be wiped out either tonight or tomorrow........... how difficult is that?!! 


But life is tough!  I know how tough it is for me , but I hear of so many people who have difficult times... I  feel that when any person has a problem it's 100% their problem.... there aren't gradations of problems . If you have an issue in your life it takes over everything. 
The kind way is to recognise this and respect it. 
To everyone who has a worry, a problem, I send you Hugs.... we all need them.

HUG ME, I'VE GOT  MND

RUSSIA ROCKS!

Looking at the stats for today I see that people in Russia are looking at my Blog in equal numbers to UK. I wonder why?... do get in touch, leave a message if you are from Russia... or anywhere... I do wonder if there is a prevalence of MND in Russia?  Do tell me.

I have had a busy day. Sorting cars (yet again!) and getting nowhere, (yet again!)..Christine and Ros came to visit. We had a cuppa , lots of chat, and they did a few jobs which so helped. Thankyou. Scott came and did a risk assessment re arrival of "rise and recline" chair (!), and men came to do handrail from garden... but left as it was raining!! So chair and  handrail should come next week... watch this space!
Christine, with whom I'm going to London next week, sorted out two bits of important help.
Firstly I had thought I had to catch train from Hebden Bridge as there are steps to platform to go to Leeds from Todmorden... apparently this is recognised and they will provide a free taxi to the train , Hebden Bridge, from Tod. WOW! How helpful, and very useful information. She also has arranged with Age UK to borrow a wheelchair for the day. This will help as my legs are so weak and I might not even be able to get from platform to Taxi in London. Christine is happy to push me. Not an easy decision for me, but necessary , however. It is hard to give in to these changes but I realise that I must, have to.
The reason for the visit to London is to go to The National Portrait Gallery, to see the Lucian Freud Exhibition. Now much more confident and soooooooooo looking forward to this day, May 26th.

But , the best news today was that Chrissie had her 20 wk scan, and all is well the baby. YEY!! YEY!! YEY!!!

HUG ME, I'VE GOT MND

THURSDAY

Well I think it is... days merge into one when you are trying to wade through info re wheel-chairs, buildings, cars....... and people just don't ring back!!!  I had waited, delaying my shower, for a person to ring re WAV cars... he promised within the hour. At 1hr 6mins the phone rang (Yey!, I thought).  But no, it was one of those calls re grants for insulations.... How many have you had? Millions ,like me, I guess. So politely, I said,that she should take my name off the list..... and hung up..... did the car man ring??? just at that moment ???... who knows... he didn't ring at any time later... and I did give up, and have had a shower!!


Chris and Christine did come round for our meeting re a-MAY-zing!, our Exhibition. Lots more notes made, mustn't loose the list this time!! Nearly done all my jobs though, they are doing all the walking round jobs.. I'm doing all the at the computer jobs. Collected our poster this afternoon, it's so lovely. I'm known as the pink poster lady at the printers... apparently not many people choose pink as a background colour for a poster. I think this is great!


Then as the Christines left. Their car was parked very close to another, so Steven, next door, came out to move his , in an amazing state of dress!!!!!.... do wish I had had a camera close by.... we had a great laugh!


Elsa due back from London any moment so think a glass of wine in order... Cheers!!

HUG ME, I'VE GOT MND

101

Yes! this is Blog post number 101.... I wonder how many I'll get to?


Sometimes, like tonight , I feel I'm so tired that I won't Blog... but actually it's a good way to end the day, write down my happenings, my highs and lows.... so I like doing it....and many of you are reading it, thankyou.


The Photoshop saga! After hours of fiddling, I finally gave up and decided to get the Printbureau , to sort it out. Cost at that time was no object, I was so furious with myself for forgetting my basic knowledge of the program. So today,( parking outside the door on double yellow lines, with badge(!),) I went to Hebden Bridge. Yes, they will sort it out, as they know my basic format, and all for £7.50 !!!!!   I'm pleased but furious that I spent so much time and energy!! Sometimes you need to just let go... but I am too much of a terrier for my own good.  I just use my precious energy!! I must learn!!!


Today is supposed to be my relaxing day, when I have a treat at Salon Eden. Today it was nails day, now a pretty pinkish/purple. But as well as this treat I had a trip to the dentists for the Hygienist (new dentist, great clean, felt great), also visited Anne to take pics of her wet room to send to Richard, (my landlord) as he is meeting a plumber tomorrow... and as I said , went to Hebden Bridge.
Not much for many people , but too much for me. Shattered again... sorry must stop moaning!   OK ,one last moan, I have back ache as my chairs are not really right, so on Friday I meet Scott to try out chairs. Hope there is one in a nice fabric and colour !!


Tomorrow Jo, from The House of Colour, is visiting, bringing some new make=up to try. Really feel brighter when I make the effort to put on make-up...... (whatever helps), Yes!!! Also tomorrow the technician will fit my telephone link, so I will have a link to my neighbours, should I fall. When I move it will have to be linked to Halifax, as I won't know near people who would take on this responsibility.


So that's been my day.. Hope yours was good.
And thinking of moving:

Enjoy!


HUG ME, I'VE GOT MND

IF AT FIRST YOU DON'T SUCCEED.... SCREAM !

I have had a very stressful few days, hence no Blog!
On Thursday, the accessible homes people visited again. It soon became apparent that the adaptations would cost me a considerable amount of money, but more importantly, it would be 6 months before the exit from the house could be completed. I feel that if I can't get out in a wheel chair within 2/3 months, I will become imprisoned... (and Saturdays events, highlight this possibility.) The team left to look at the bungalow in Old Town....
Friday I waited for the team to report back.... no calls. David from Reeds Rains came to view the house and gave me info re letting my house.(A lot to take in , but fortunately I do have experience of letting as I let Mums home for a while, when she was in the Nursing home).
On Saturday evening I went to the Hippodrome to see the Titanic film (late 50's, early 60's?). I went with Liz, it was her birthday, and as requested we got all dressed up. Most of the evening was fantastic, but I found two chinks in my ability (dis-ability!). I got stuck in the Ladies, and had to call on another woman to help me up... OH! the ignominy!  Then coming down my steps, I fell... Liz and Tom came to my rescue, having to put my left leg into position so that I could stand... the leg would simply not work!!


So... on Sunday I had arranged to visit a bungalow, where it might be possible to live. It's in Old Town, so, not near my lovely neighbours.. the down side, but he up-side, with little adaptation I could live safely there. I decided that it would be best all-round for me to move... but a very emotional experience. Tom , Rebecca and Iris came to view , and they too feel that the move would, on balance, be best for me. They have promised to visit regularly... I shall so miss them.


So today, having at least one decision made, I thought life would be a little more simple.  Not the case:
Car Issues.... I have decided to go for a WAV (wheelchair accessible vehicle) that I can drive from the chair. These are expensive, but second-hand options are available. I rang Motability and got some appropriate numbers of suppliers. The first few had none available, then ( OH Joy) I was told that there were none or few... as they were not going out, as they need to be saved for the Paralympic Games.  Unbelievable world, could never have thought of that one... Anyway several calls later I got in touch with Geraldine.... a real terrier of a woman... she has contacted a head honcho and he will be ringing. However, she may be a terrier, but I won't hold my breath on the head honcho... we'll see.
So the next target to sort was an outdoor/ indoor wheel chair.BUT you're not allowed one unless you can exit your home.... which i can't. BUT I asked it I could have one in advance of the move,using it as my car seat, so that I could , at least, have a car. You need a prescription (!) for a suitable wheelchair. So I got in touch with the Doctors... this bit worked. (YEY!!!)  I got a call back from a doctor, and a prescription will be sent!!!
Tesco man arrived.... with no bread, despite my agreeing to substitutions. Rats!!!
Then a call from the Printbureau, suggesting that I may not be satisfied with the quality of the poster... I had done it on an iPad app.... and did wonder about the quality. So I decided to re-do it in Photoshop...... But it's so long since I used this program that I have spent 6 1/2hrs trying to get it right.... and still haven't     RATS!!! I have decided to throw money at it and get them to do it all, but I will have to get up early to do this. Rats, again.
Tonight, I'm so, so tired and frustrated, but I'll leave you with a few pics of my, very likely, new home.

View from garden, Stoodley Pike in distance, south facing.

View of lounge v v large 5mX6m

The new Tenant??? !!!

HUG ME, I'VE GOT MND.

THANK YOU U.S.A.

The USA had as many viewings as UK, yesterday and today! Thankyou U.S.A. !


(Actually this is my second effort as writing my Blog today.... I tried on my iPad, but I managed to delete it by mistake!!!!... so back to the laptop..)


Sooooo.... Today: two major things.


Firstly, I have consulted with an estate agent, re letting my home, as I feel that moving is the best move for me... watch this space.... !


BUT THE very, very, best event today was that Tom (Palmer), my author neighbour, rang to  ask if he could come in for a cuppa. He arrived and gave me a gift of some Fair-Trade chocs,,, YUM.... BUT he also gave me a copy of his latest book, out on May 3rd.."BLACK OP".....
and .....he has dedicated it to me!    The dedication says, "To Nikki Woodman, lovely neighbour, lovely friend, lovely woman."  
WOW how wonderful !    I was so moved. 
Tom had dedicated a book to me some years ago,(I think,as I had helped proof-read), so this was a tremendous surprise, completely out of the blue, and I did cry.. 
Thankyou Tom. You made my day, and  you certainly gave me a big hug!



HUG ME, I'VE GOT MND

CHAMPAGNE!

I know someone who , when faced with large amount of ironing, opens a bottle of Champagne.


So tonight, not that I'm ironing!, but I have a bottle of Champagne chilling... well it has been a difficult day... It seems that if I wish to stay here in Tod, I will have to pay large amounts towards the adaptations... BUT more importantly it will take 6 months at least before the exit route can be in place.... so looks like I have to move... getting my head round it....


OH! The Champagne is not just for me, I have guests this evening, Penny and Robin. They are bringing a starter and desert and I am simply baking M&S chicken pieces, jacket potatoes and a salad... No prob... except that I need a little rest now before they come and so this is a short Blog.


I'll end with my poster now, WITH the dates added ( panic over I rang the printers this morning, they hadn't started printing!!). Hope you will pop in . MND fundraiser Sunday afternoon, May 13th!!! 

HUG ME, I'VE GOT MND

A BAD SLEEP

A Bad Sleep... why? Well tomorrow the assessment team come to work out possible access to my home in Tod... Don't know what will happen , but depending on what does happen I think I will know more about where I will be and how I will operate . Moving is always stressful but with MND I really think it is very very stressful! However on the plus side my friends have all chipped in and have offered to help. ... and actually I will need help, as I simply cant do much. 
The feeling about the car decides me more and more that maybe a car with a hoist will be a good solution as if I have one where I can drive from a wheelchair... will I get the use?... maybe then will be the time to let taxis and friends take the strain. (Thankyou friends!!).
I had been given the number of man in Walsden who has MND ( Number given by my hairdresser) and eventually I rang him today. He has ALS and is one year on from me.We spoke whilst he was wearing his aid for breathing.. I could understand him, but it was difficult for him to hold the phone, so we didn't chat for long. He does have a partner so can use a special chair to get up his steps... but this is out for me as you do need someone to help you... bang goes independence!!!.


I also got a call from Prof Shaws secretary at Sheffield today. I am to go into hospital in Sheffield for more tests on May 9th, for two nights.  Then maybe get on the new drugs trial.... fingers crossed .....and fingers crossed it works.....   and fingers crossed I'm not one who get the placebo.....  some people have to!


I'll end with a copy of the poster for our   "a-MAY-zing" exhibition. I took it to be printed today. Parked on double yellow line, stopped by warden as I was about to set off home and was able to show blue badge... so all's well there then! Blue Badge Rocks!!!! Yey!!!

Oh NO! Just realised no proper dates!!! I'll have to go to printers pdq tomorrow!!!




HUG ME, I'VE GOT MND

ACCOLADE!

Today I went to have my "Driving Test", in an indoor wheelchair. Apparently I'm a natural... What an accolade!!!  But it's the best I've got today. So Thankyou Peter ( who talks about rock music) and Rose,(who took the photo) and helped me with my driving!!

Baby You Can Drive My Car!

HUG ME, I'VE GOT MND

IT STRUCK ME!

I had a great day planned yesterday... Some painting, a shower, afternoon tea with the Palmers, then an evening meal (curry) with the Coopers.


The morning went well. I showered and changed into fresh clean clothes... I even put on some make-up and used a contact lens instead of my glasses.... haven't done this for ages... glasses are easier, but not as attractive, especially if you have bothered to put on make-up.
I had the statutory rest for 15mins after a shower in order to do a next task. Well not a task but a pleasure, going next door. Tom asked if I needed help to get down their path, as I had done it only recently, I knew I would cope... also I want to be independent...  But half way down their path, I panicked and had to shout for Tom.. HELP.. I couldn't move, my legs were simply not able to move me.. I was terrified of falling as I knew my legs were so weak... Tom came to my rescue.  
 We had a wonderful tea-party with a beautiful cake. It was decorated with millions of pretty flowers, in all sorts of pastel colours.. and in the middle a duckling, made by Iris. AND  It tasted wonderful. 
After the tea party I went home, with help and used my loo. (I can't get up to the bathrooms of my neighbours), had a short rest and then called the Coopers to ask for help to get to their home ( 3 doors away). Dear Chris Cooper, (actually a physiotherapist), came to help me. All was well till we got to the front door. I simply couldn't get in. It took Chris, with a supporting hand on my back, and me clasping the door edges some minutes to get in. After each step I was sweating! There were only two steps!
I had managed these steps only a few short weeks ago. The meal and company were lovely, but by 8:30, I needed rest, the loo, and quiet... in that order... so Chris took me home.


It was then, as I sat in my comfy chair, that I realised.. I'VE GOT MND..... and nothing that I do or think, no matter how brave I am trying to be... no matter how positive..... in the end I have MND... and it is cruel.. it marches on with inexorable speed and there is sod all you can do to stop it!!


HUG ME, I'VE GOT MND

OK, IT'S THE TOMORROW OF YESTERDAY!

I went to see the bungalow today. It is so right in so many ways, for me. The whole issue of moving is which reigns,,, Head or Heart?
I simply don't know. Head would say move,. heart says stay............ I guess the only practical answer to all this is to wait till Thursday to see what the accessibility team come up with... ie plan my escape route....... and it's costs.
I simply don't need all this, I've said it before, It's bad enough coping with MND, without all these other things...... but that's the way it is............. sadly.


I'm visiting neighbours tomorrow for afternoon tea, and then a meal in the evening with other neighbours.. So don't expect a Blog tomorrow. Easter Sunday shall be my day of rest.


I'll end with a short film from the MND association... there are lots of films on you tube if you search.. But this one sums up the course of the illness vividly. 
The problem is .you don;t know the speed, but you always are alert and aware of what is happening. A cruel illness.

HUG ME, I'VE GOT MND

TODAY,TONIGHT, TOMORROW,

Today I was awakened by the phone at 10:30... which I ignored!!
Eventually I got up at 11:00!    Normal for me after a dreadful nights sleep!
I'm reading the next book for our readers group, a very tiresome novel by PG Wodehouse... how irritating is Archie in the" Indiscretions of Archie".... I quite understand why this book is out of print. Still, as the next group meeting is at my home , I must persevere.... My usual rouse of getting a DVD won't work, as wisely, no-one has made a film of this book!!!!  Anyway. my sleep started (or didn't) with reading till 1:30. I then tossed and turned.. got milk at 2:30, took paracetamol at 3:00.. then slept.... Thank goodness!!!!
So what was I tossing and turning about..?  Well I left a message on R's answer phone re viewing his bungalow tomorrow ( Sat).... He got back this morning saying that it was still vacant until I finally decided if I would move or not. So I was tossing and tuning about the sense of moving.... Today I feel it might well be sensible, but it is a let ... what do I do here.. try to let,I guess.. if I sell I will have money which will deny any help with care... all this is a mine-field of choices.!!!!
I painted a little and had a call from Chrissie, who had been looking for a kettle that I could manage..(ie not too heavy)...... she put in Kettle, MND and in Google search I came up 6th!!!


Now I'm off to shower, and tonight meeting friends to see the film Magnolia Hotel... well don't think that's quite the name, but you know the one with Celia Imrie, Judi Dench etc... all the brill British actresses.Meeting up with my good friends , The Coven! Yey!! Looking forward to this, and the cup of tea and piece of Lemon Drizzle Cake... Hebden Bridge Picture House , ROCKS!!!!
Tomorrow I'm visiting Elsas home which is undergoing a major change.. two cottages being knocked into one home.It will be splendid I'm sure as she has great taste. We will then go to The Robin Hood, where I can use loo, and have lunch.. then on to view Misty Morn.. the bungalow....
watch this space.....




HUG ME, I'VE GOT MND

COMPLICATIONS!

The issue of getting a car should be simple... It always used to be.. I had so much money, went to a dealer, did a test drive, and bought the best car for me.

Now suddenly, it has become a mine-field.. and I've spent the whole day in that b minefield!
Under the terms of Motability you appear to be able to get a car for very little money, ie just the transfer of your DLA money. Not so simple with MND.
There are two sorts of cars that would be suitable for me. . The first would be a car adapted with the necessary hoist for a wheelchair plus adaptations so that I drive with my hands. The second is a WAV.. a Wheelchair Accessible Vehicle. The latter will/would allow me to drive for longer as you access the car via your chair, lock it in and use it as a driving seat.
Totally confused after days of looking at cars, I decided to go on a different tack. I rang the accessibility garage in Elland, (they had been the ones recommended as the one to do the adaptations). There I met Dave. He has been so helpful today. But as one solution is provided another issues raises its head. I had thought that the adaptations would all be part of the price.. To my surprise I learned today that these are extra. The non WAV costing between 3 and 4K extra. Dave then pointed out that a WAV would mean that I would be independent for longer ( good point), there is a nearly new vehicle , only 850m on the clock, which could have the adapt ions done completely for 8K. A Bargain..... compared to the new WAV vehicles which are 10+k.minimum!
So is it a simple choice.4k or 8k.....
Well no, it depends on if I can exit my home.. and how this is done. If the wall and lift system is used it will be 6mths before its in place , and this is expensive and is means tested... ie I will have to pay towards it..No benefits you see. If you have a benefit then you get all this completely free.. however if you have worked , have a reasonable pension, ( though not much) you have to pay!
So a WAV should be the  best choice , which will mean I don't have to walk round the car to use a hoist to release the chair, BUT I will still need to walk from the chair to the outdoor chair lift ( if that is what is decided as it is a cheaper option) so what is the point in choosing a WAV.
The answer , of course is to move... So I might look around... the whole thing is fraught and I feel so anxious... I'm in the last few years of my life and having to make impossible decisions, all so interdependent.

I recognise this is a rant.... I'm trying to get rid of my frustrations... why can't having MND be simple! and cheap!! It simply isn't!!!

And in and amongst all this I'm so trying to get my exhibition together... anyone would breakdown... I'm determined not to... but it's bloody hard!

HUG ME, I'VE GOT MND

3240

Yes! 3240 views of my Blog so far... I think this is amazing... our MND community is very small after all, and I do know some of my good friends and are regular visitors... Thank you.


Just had a disaster. Put re-cycling out, unusually just one bag of bottles and cans... so I did it differently. Rather than step out with stick and then lean in and collect bags, I stepped one step down. Foot got in wrong position! Eventually I was so stuck with feet not moving,  I had to drop to my knees, crawl over entry step and through to the lounge to where I could push myself up on my sturdy chair. SHIT!!!! I'd laugh if I didn't feel like crying!!


So now , rather than concentrate on negatives, I'll post you some of the pictures I'm doing. Really bright colours to make everything bright and fun!! YEY!!!!



"Forest Fire" created on iPad

"Pretty Garden"  created on iPad

Pictures drying... Oil on Canvas.

MND CONFERENCE

OH DEAR THIS SHOULD HAVE BEEN PUBLISHED LAST SUNDAY.. IT HAD BEEN SAVED NOT PUBLISHED... SO HERE IT IS BETTER LATE THAN NEVER!


Elsa picked me up at 8:30 this morning! Not easy to get up at this hour!!! The MND conference was held in Leeds. It was both informative and interesting. I don't think I learned much more than I already knew...but it was great to be amongst such friendly, supportive , passionate people.


As you can imagine I am shattered, so not writing much tonight.
There were a few emotional moments for everyone, including me. But I guess that's bound to be on the cards for so few of us who have been/are, touched by this truly sad disease.

HUG ME, I'VE GOT MND

LIFE IS A MINESTRONE

So last week we had brilliant, hot sun, now rain and wind and perhaps snow threatening!
In short, life is a mixture of ups and downs and opposite views, events and feelings.
Yesterday was such a day, for me....... And the reason why I didn't write on my Blog!
I had left a message for the manager of home adaptations to ring me on Fri... he rang yesterday. ( well I guess he did ring!). The reason for the necessary call was that the advice and referral for home adaptations had been sent to his office on Feb 17th. It wasn't till the invoice for the stair lift came to the office that it was realised that this vital referral had been overlooked.
The referral is all about , in the first instance, an means of exiting my house. The back door has steps too steep, thus utterly impossible to exit. The front exit is less steep, but still too steep for a wheelchair to climb. The recommendation was that a lift up to a road level wall would be constructed. Yesterday I discovered that the planning permission for the wall would take 2 months or so, then the construction for the lift another three months... so we're talking about 6months , at least, here! Additionally, the whole process depends on my being able to pay... which may take some weeks to find out what I would need to provide!

I didn't know if I should shout  , scream, or simply cry!  In the end I said, very calmly, to the man.."You do realise I'm terminally ill." His response was,"I'm sorry about that".
I feel more than sorry .
I have been trying to be very, very positive, feeling that if I am, then my life will be extended. It is sad to find that, during the last few days, I recognise I have weakened. This morning I filled the kettle and found it almost impossible to lift. I am very wobbly and need to sit and rest between any simple activity.
I really , really need an outdoor wheelchair, and a manner of getting up to the road. I need to know what wheelchair I will get to order a car that can stow it... ie it's size... and the car will take 2 months to come.
It makes you want to shout and scream... SOOOOOOO frustrating!
I fear that if I become much weaker none of this will be relevant. I need solutions NOW!

So dear readers, a scream and shout!
 It's at times like these that I value your metaphorical hugs.. so thanks, all gratefully received!

HUG ME , I'VE GOT MND