Footware

One problem i am having is getting shoes and trainers, even my ugg boots are difficult with my toes curling, also struggle with them being freezing pritty much all time, so if anyone has any ideas or solutions please let me know.
Tomorrow its off to NEC in Birmingham for Top Gear live, all arranged by my fab cousons, should be good and hopefully meet the 3 nutters, either way i will have plenty photos for the memory wall.

Life in my own home is great and the bungalow is looking great too, i have to take my hat off  to St Helens council for how ive been treated through horror movie of the last 12 month, its not been plain sailing and i did wonder were i would end early on when i first went my parents from the black widdow, but now i look back and think its well worth waiting for, Thank you St Helens council and all involved.

Wristband update

Wristbands are ordered and should be here by november the 8th. They will red/white swirl like in the picture and have "Fight MND Together YNWA" and "www.cvmnd.weebly.com"  Dont forget every penny made will go to sufferers and not line the pockets of the charity big wigs! None is for research, even though we need, mainly because us fighting this horrendous disease right now will not benefit, we need help getting extortionally over priced equipment or alterations just to have a little bit of independance or normality. Any questions or ideas email me.

Wristbands

first off ive broke my wheelchair again! Still in process of getting the one i want.
Now ive thought about this before and now seems a good time, create my own wristband with my site on and give what i make to my local  mnd branch, also i am doing a photo wall so anyone who buys one can send a picture of them waring your band, funnier the better but try keep them clean lol, this is entirley optional you dont have to send one. We are looking at 2:50 per band and there will be a selected number of kids bands.
Be back soon with more info.

I have added a few pics of the party, those of you on my fb can see them all.

Its been pretty quiet this week for a change, felt a bit strange, spent a lot of time setting everything out on my eyegaze and adding bits, the one thing bugging me is the comunicater keyboard when using internet has no word prediction. Tonight a few work mates are coming for a few beers which should be good.

Been feeling a bit brighter and seem have a bit more energy! is it the new anti deppressant? who knows. 

Party Pics

On the real thing

Took my first dex that is defo the real drug, maybe i will see a difference! Sadly i wont be going ctu again so thanks to you all for looking after me and making the visits more barable.
Stil trying to perk up and stop stressing, i think i am on the up but the slightest thing knocks me back, i need go and treat myself to something.

So whats new

Every week is full of ups n downs, and its no different this week, news of a fellow batter who i had the  pleasure of meeting passed away rocked me to the core, i still cant believe it, my thoughts are with you all x.
This and other battlers i chatted to early days, have been there offering support for me all through while having their own shit to deal with, this has made me realise i could have done more to support them! Thank you.
One thing that was fun was my fancy dress party, everyone really made an effor and looked great , ive got plenty pics to upload, i will be putting them on website.
Tomorrow i will get the real dex trial drug ,which should be interesting, also a visit to the niv clinic in the afternoon.
Family and friends continue to amaze me,even while i am being a misrable get! to be honest i know i am. Its very difficult to put into words whats been going through my mind, a lot of it is the near future and what lies ahead, how long left, will it stop, all constantly popping in to annoy me so much so that i feel time is really ticking.

A quick note, seeing as you read this can you let me know my unreasonble behavior? as far as i amaware getting terminally ill is not unreasoable, or is? please feel free to reply here or email.
I dont want anything to do with you or your parents and i will not be bullied by anyone, also i will not back down.

Its all go

A new lease of life now with this eye gaze, its amazing! just being able to read and send my own txt messages, sad but makes such a differene. with each hour i learn more and get quicker, i am pretty quick at picking things up so mastering this should be fun. ineed to find a way to get a better voice, like keith lemon voice lol.
At the moment im very happy and learnt a lot about people, how fantastic some can be and how cruel, heartless and down right nasty some are, yes u know who u are! feel free to send police here, id love nothing more than letting the public know the story.
Moving on, their is only a few days to the big party, cant wait to se everyones costume, seems like quite a few are coming. Again my superb family are getting everything ready.

Changing subject, my progression seems to be slowing a bit which helps, maybe being happiest ive been in years makes a difference, no moaning and no stress, bliss. Had a new hoist put in today, hopefully get my new chair soon, so much going on at the minute it feels great, better a holiday booked with my partners in crime lol, where to go is the problem!