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.

Well its been a bit since my last blog, not because ive been busy or anything, ive been getting used to my new toy ;-) an ipad 2, chuffed to bits with it and i have my sister, mum and dad to thank for buying it me, its another cross off on the wish list! i will need add more soon lol (laugh out loud, but i guess it could be lots of love Jan) One disappointment with it is i cant update this blog on it, for some daft reason apple dont allow flash! Its now making me think more about changing website, if anyone has any ideas please let me know.

Again sorry if i dont reply direct to comments but i do read every one and fully appreciate them, good to have you back Linda ive missed your comments ;-) hope you had a nice break.

Last few days have been a bit up and down, progression doesnt seem be slowing any which is a bummer, i need a plateau for a few years lol. 
Last night we went out for a curry with a fellow sufferer of the tosser and his partner, we had a great night and it was so good to meet someone similar to me in many ways, we all got on very well and ive goto thank them both for travelling all the way here. Looking forward to meeting up again at their end next time, oh and a picture may pop up somewhere soon.

Tonight is a night in with the lads, few beers and a film while Polly is out on another reunion, i opted out again as i think she will enjoy it more without having worry about me.

What a great wedding, it was really nice and we really enjoyed the day itself. My cousin and his new wife looked great, they obviously worked hard to make the day wonderful for them and their guests, congratulations to them both.

Now for the worst parts! the travel down was tough, it took us just short of 8 hours which was a killer! on arrival we got my scooter unloaded and went to check in, now how do i get in? sorry no access for wheelchairs or scooter, oh we didnt know that. Anyway i waited outside admiring the view when my cousin came over and said their was a problem with our room, i would have to go up 2 flights of stairs to get in my room! Now when we booked this place we asked about a ground floor room but they didnt have any, they however say that their was only 7 steps to our room, although this was a pain we thought 7 is not so bad and at least we will be with the all our family and friends so we booked it. As you can imagine Polly was not happy, we was told 7 steps when in reality there was 5 to get in the building then 16 to our room (oh the lift was broke) thats a total of 21, 3 times what we was told. This would have been very difficult to manage for 3 days, Polly was livid and ended up getting a manager who coinsidently wasnt around so we had to wait. 
In the end we got moved to the hotel next door which wasnt great as we was separated from everyone but at least i could drive in and straight to my room. The hotel we was meant to be in paid the extra £50, gave us some drinks and allowed us to have breakfast with everyone else free of charge, this was of little comfort really because it caused so much stress that we didnt need! I ended up having one of those emotional episodes sat outside, i felt so worked up and realised how tough the future is going to be when traveling, I have never felt so useless.
There is so much more that went wrong at Faulty Towers but i dont have the energy to write any more, check out The Burlington Hotel at Worthing on trip advisor, Polly gave them a lovely review! 

Like i said the wedding was fantastic, i loved being with everyone and they all helped look after me, Polly worked soo hard sorting me out and the other problems and still managed to look stunning, i dont know how i would manage without her.

The last couple of days have been pretty hard in terms of strength/energy, my legs feel terribly weak, my left arm also very weak and the fingers are starting to curl more. Its a bit of a kick in the teeth to be honest, if i am on the real deal in the trial its certainly not doing anything to slow this tosser down! When i got diagnosed and it was just my right hand it seemed to be pretty slow for 6-7 months, right up to the wedding in Feb i felt it wasnt to bad, if you saw the video you wouldnt think much was wrong, but since then its as though its sped up, so much has changed in this last 6 months compaired to the previous 6, I do think its about time the tosser gave me a break! 
You do wonder if the Riluzole i started at the begining  is really giving me that extra 3 months, would i have been worse off without it? who knows, for the first time i feel like i could just scrap it and take nothing, the Baclofen certainly does sod all beside give me a dry mouth.
When i went hospice yesterday the girl doing the massage on my back, neck and shoulders  commented on the twitches, all over my top half just how fierce they were, she was surprised i wasnt getting muscle pains or back trouble. I'm pretty used to them now as i dont think their is one limb that doesnt have them. 

There is a low point coming, i can feel it, must be like a womans time of the month lol. The trip to Brighton tomorrow is gonna be a killer, lets hope ive not got too low when i return.