The tosser is so good, went on my arse again yesterday but this time more damage :-( sprained my ankle and twisted my knee! Yes it bloody hurt.
Work is starting on extension, our door is going in first then the hard work begins.
Polly is off to Ireland on sunday so got 2 babysitters coming in.
Sorry this is short, just not in mood at min, struggling.

Work will be starting on the extension next week, its great to finally think things are moving,  im getting desperate to get it done and cut out the stairs, that fear the life out of me!

Not feeling myself today, had a few beers and a game of poker last night and how difficult it is to do the simplist things, hobbling round with my new delta walker (no offence but its not attractive at 36) sitting next to my commode, drinking out of a baby cup and when eating i make more mess than a baby! Depressing.

Their is none lol, feel very deflated over the whole thing, a few of us discussed this on facebook, we all seem to feel things have sped up since we started it, surely this cant be the case but it does get you thinking.

Things are still going down hill on the progression front which is quite depressing. One good thing is my community physio is still with me, its such a relief as its the only person i can rely on to get things i need and someone i am comfortable telling my problems too, besides Polly obviously. She even got on to the council about my planning application which looks like its been approved :-) 
Wheelchairs have been on my mind a lot lately as i feel the time has come to almost admit defeat! I will post more on this when i know more details.

I had one of those dreams the other night were it feels that real you wake up thinking it was real, then you realise it wasnt! I wont tell all but part was that my right hand was starting to work again, it felt so real, i was so excited and telling everyone, i could even use a knife! upon waking i looked at my hand, bollocks, it wasnt real :-( I think this all came about due to me, and others thinking the trial drug is not slowing but speeding the tosser up.

I looked into wristbands the other day with the thought of doing my own relating to my website and send them to my avid followers ;-) but to get them cheap i need buy 100, i dont think i would shift that many lol and if i did have 100 i dont want to tread on my friend Janets toes selling them here. I think my aunty may be looking into it to sell on her fundraising travels.

Ive been a bit behind updating but i will do my best to get back on track.

I'm still alive lol, ive been a bit caught up with stuff, weekend away with best buds playing poker and drinking too much Morgan Spice ;-) also trying to get a website sorted for Pollys new buisness venture, vintage wedding hire! I will be back on later to waffle on a bit more, for now back to my jobs list while Polly is out.
Back soon.

Bloody fell again this morning, my hip landed on my bath lift charger plug that was in wall! smashed all socket in, thats twice ive fell this week, its only a matter of time before i do some serious damage.
Polly is out all day today so ive been given strick instructions not to go upstairs.

Had a good time at the AGM at Stanstead, met some great fellow forum members which i really enjoyed, its good to chat, have a laugh and share problems with. Plenty of photo's taken so i will post them when i have them.
The meeting itself was pretty good. i loved the talk on stem cells  which was put across fantasticley well and shows a lot of promise for the future, i never really thought this would be the way to go but i was convinced otherwise. Another thing that stood out was their was over 30 fellow "tosser" sufferers which was a first.
Like everyone it seems the MNDA are tightening their belts, thats fair enough but does worry me slightly, they need to save money, now its not my job to say how they could but i know a few ways. One element was negotiating with suppliers, clos o mat is one, i have personally been told that funding for these is being looked at which dissapoints me as my hands are getting bad. Why dont we have a list online of all equipment available for loan that is no longer used? their must be loads dotted about the country, passing things on must be the best option.
One thing i cannot fault is the commitment and passion of the volenteers, i cannot thank them enough for what they do for us.
I had a go of the eye gaze system and wow how good is that, using a computer once hands have gone is possible, but like everything for us it costs, 5 grand for basic and 11 for wheelchair mountable! cant see anyone getting that for me. You should only have this disease if your rich!!!!
It was worth going to the AGM even though elements of it made me sad.

On a personal note i'm pissed off. Legs getting worse, falling regular, hands are bad, the left is getting as bad as right and to top it off i know its hitting my throat and speech, hence the word "TOSSER" I need my extension ASAP, looks like i wont get a clos o mat, still waiting for ramp at the back so i can get out on scooter, OT never rings back, need get wheelchair sorted but dont know where start, lost my physio community nurse (nobodys bothered to tell me though) and everyone ive tried ring today is not available aaaaaaaaaarrrrrrrrggggggggggghhhhhhhhh other than that im fucking fan dabby dosey!!!!

Sorry for language.

i can now write my blogs from my beloved ipad :-) it isnt the best way but saves me fighting for laptop lol
Going in work tomoz to see the lads and thank them for the fundraising they had been doing for me, amazingly they had raised nearly 1200 towards our extention! how good its that? excellent, what a great bunch of guys i can call friends. My mum has made some of her fab cheesecake for me to take in.

i have found something!!!!!

Update on how things are. Their is obviously no slowing down of the tosser, its getting to me a bit this week as i am really unsteady walking and my left hand/arm is showing a lot of muscle loss, my feet are freezing all time and not being able to do the simplist things is pissing me off!
Polly has been great helping me out and working hard so she has been having a few nights  on the town recently, which she more than deserves but ive been getting paranoid due to the last 2 nights have been with old school friends and 2 of the male friends have made it quite clear to her they fancy her, in private messages calling her sexy and how lucky i am aswel as when their out. I find it a bit inapropriate considering they know what were going through, to me it feels they are letting her know ready for when im out the way! I see the photo's of them all hugging, dancing and having a laugh, what do i have to offer compaired to them? im falling to friggin bits. We have talked about all this and how much she loves me but i cant help feeling like a failure, in all areas! I need to stop worrying but it is difficult.

One thing did upset me yesterday when i dropped Hollie off at her mums, her mum told me she got upset at her nans saying im going to lose my daddy, she has also said it to a friend here too. While she was here over weekend she was worried about her eye twitching, we told her its not the same thing and polly was really good at explaining the difference. It shows that all whats going on is playing on her mind and by saying im going to lose my daddy tells me she  has heard or read something somewhere, now i have been in local paper twice with all this fundraising and word of what is wrong with me has spread all over our towns nearby so it could have come from anywhere what Hollie has heard. It breaks my heart to think she is upset and worried.

Cant get to edit this site on ipad which is shit, i can use blogger but that will be going back to what i was on before and i found it pain too get the page how i want it. Maybe i will have to go back to it just for the blog, i just dont want to loose this site.