LOTS OF HUGS TODAY

My first brain-wave (Hug) was that I had breakfast in bed! Orange juice, Crunchy Nut Cornflakes and coffee.... all carried up, on my knee, courtesy of the chair lift! What a thrill!!


Next Hug was that my cover for the ipad arrived... now have cover, stylus and .....soon , very soon..... ipad!!


Next Hug a visit from Wilma and Sarah, who brought cakes and lots of updates on things happening in Hebden Bridge, particularly my ex-pupils... so good to know some are doing so well.


BUT the best Hug was, I rang the DLA to update them on my status re use of bath seat, zimmer etc and was told a decision has been made. I have been awarded the highest rate of mobility. This means that I will be able to have a car through the Motasbility scheme, ie a car which will be suited to my needs. How wonderful this news is. I am ok, just at the moment, for short journeys, but a car assessed for my needs will give me back confidence and freedom to go wherever. Best bit, I will be able to go and visit my girls... though as neither have a downstairs loo, that will be another hurdle to jump... but I will manage somehow! YEY!


Last Hug, Have been painting and feel my mojo is coming back. Below is, a not quite finished ,painting.  I thought I would share it... hope you like it. (Not the best image I know but wait till you see it in real-life the tree, it's wonderful.).

A good day then. Plenty of Hugs.But I'm greedy (!!!), and always need yours!!!!

HUG ME , I'VE GOT MND

NEWSNIGHT...DLA

Just watching Newsnight, about DLA. Having just applied i don't expect to get the care element at the moment... but will do eventually (Stephen Hawking has 3 carers, and it's likely that I will need this type of care in the future) but for now I desperately need the mobility element of DLA.
I will soon need an adapted car if I am to be independent. It's lovely that so many people visit me (Thankyou), but to be "normal" I need to be able to get out and visit people , to go to shops, to go to the pictures/theatre/galleries,... to see my family.
I welcome a medical assessment if it would move forward the time when i get this help. I do need it. Please God I get it.
I sent my form 1 week ago... watch this space.
I have a life terminating illness ie more than 6 mths but it is definite. There is no cure. Most people survive 3-5yrs with ALS,(an exceptional few,  5+yrs.. I hope I'm exceptional! ). But who knows how much of this time will be spent with any kind of movement, and thus freedom. I take one pill, riluzole, that might extend my life by 3-5 mths.The only medication there is.
Eventually all my muscles will freeze and I simply won't be able to move, speak or swallow. So I do need DLA mobility now: to enjoy the freedom of life/movement whilst I can. 
So, yes, some people may be cheating the system, so I'm all for assessment... but please make it soon!....and   .....
HUG ME, I'VE GOT MND

IT'S LATE!

I am trying to write each day , so I guess this will mean I'll have missed Thursday as it's just after midnight.. but tomorrow doesn't start for me till I've slept.. so it's still Thurs for me!!  OK? !!
Why so late, you may ask? Well ,I have finished and printed my DLA form... all 61 paragraphs of it. I then took the opportunity to write an extra note:

"Motor Neurone Disease is a cruel disease. I have been getting weaker and weaker since May 2011. But my actual diagnosis was only in December 2011. That is why I am applying for DLA now.

I realise I will need much care in the future. At the moment I am just about managing as I am spending my own money, on my care needs. But it’s a fact that if I wish to have any energy to do normal things, in the life I have left, then I do need a cleaner etc....

My biggest need is for the mobility aspect of this claim. I am still driving, but I know I would be more secure with an adapted car. I have worn out the carpet on the clutch side of my new car, in 3mths; this must be because of how I have to hold my foot to be able to drive. I do hope I qualify for the higher rate mobility aspect of DLA, as it is a pressing need.

I have been an active person, worked all my life and have done much voluntary work and am a great traveller. This has all changed. It is so sad. I am grieving for my life. Please help to make what activity is left to me, as possible as you can, as I wish to live as normally as I can, until I absolutely can’t.  In terms of terminal illness by your definition of 6 mths, I’m not there. But I may not have too many months of being able to get myself around and do things that are normal to me.

Thankyou for taking the time to read this statement.... ".

I do hope this adds and doesn't mark me out as a smart arse!

My other big news is that the fireplace is finished and the room a bit hoovered. Liz is coming tomorrow and starting to wash down walls and I shall contribute as tea maker and washer of skirting boards, The fireplace does look lovely, an extravagance, but it will make the room so pleasant and happy, to paint in.

I couldn't write yesterday about my visit from the Occupational Therapist.. I was rather upset as she was clearly identifying my future needs.. This includes a through ceiling lift rather than a stair lift, as there will become a time when I can't transfer from wheel chair to stair lift.

 It brought me up sharp, to hear someone else saying this. I had thought it, but it's so different when another speaks it out loud.

The other problem concerned with this is that she felt the changes to my home, might be too expensive to do and thus I might be better off moving.. I am so happy here, the very thought is upsetting. I also feel that I have always lived somewhere pleasant , I don;t want to be dumped just anywhere for the last years of my life. I feel I deserve more than that and the thought of it makes me weep.

Bed now.

SO HUG ME, I'VE GOT MND