Been on screening vist today for the trial, quite a long day, arrived at hospital at 9:15am and got back home at 3:20pm. All seems to have gone pretty well, the main thing is passing the breathing test which can rule you out straight away if you fail, i passed so that was an instant relief. Blood test, urine test, ECG, physical and neurogical examinations and questionaires, once the ok comes through from them i should be able to start the trial (fingers crossed) I could be one of the first in UK to be on the trial! wahooo, my claim to fame lol. There will be a lot of trips up and down the A580 but what have i got to loose? nothing in my opinion.
The staff there are great too and really make you feel comfortable which really makes a difference.

Im feeling quite posative about this wheather im on the real thing or placebo, its a glimmer of hope!
Added a few holiday snaps to my page ;-) Good result in footy last night, seeing the smiles wiped off the manc's faces was good! To be honest they were totally outplayed by a fantastic Barcalona team.

Starting to get a little nervous about my first meeting for trial on tuesday, hopefully everything will be ok.

My mates came last night and took some measurments for extension plans, still not sure what we are going to do yet. My aunty has told me she is doing a sponcered bowl to try help raise money for the extention which i think is a very thoughtful thing to do.
I cant help but think back to just after Polly and i got engaged, we made a decision not to put me on the mortgage cos we intended to move once married so it seemed right to just wait, then start a new mortgage, life, family in our new home once the wedding was done, 8 months later up pops an ALS diagnosis! we could have been mortgage free if we hadnt decided to wait and do it all the right way.

How quickly your life can be turned upside down is unreal.
Off to a birthday BBQ today, no its not the best weather for it but should still be good ;-) Also got my 2 best pals popping round tonight, one is a structural engineer, one a bricky, so they are going to have a measure up for a possable extension then we can get some ideas of cost. No doubt we will end up a bit typsey and watch that awful football team from manchester in the champions league!! come on Barca ;-)

On another note i would like to say thanks to everyone who has sent comments and messages of support, its much appreciated. Sam thanks for your message ;-) current score Chris 1 MND 0!
Ive been thinking that the 6 n half hour flight has knocked me for six, before i went on holiday, yes i was a little unsteady on my feet before i went, but for the week there and since ive got back my walking/standing is terrable. So my question is this, could a plane flight cause more damage to already fading muscles???? It bloody well feels like it and has really put me off flying!
Looks like my life long dream of going to relatives in Australia has well and truely been smashed................

On another note i broke down in work this morning over how useless i feel being there and difficult it is with me feeling so drained, i think i may have worked my last half day!

Oh its fun fun fun! 
First half day back at work today and found it very difficult, i cant help but feel its coming to an end. I seem to be just going and hanging about, unable to really do anything, am i wasting time? i'm begining to think so.
Feeling very drained at the minute, my whole body seems to be shaking! i was only stood chatting for about 10 mins and my legs were trembling, i was like shaking Stevens lol. Starting to get quite frightened at how fast things seem to be going and been sat quietly praying for this to stop a few times lately.
Also been worrying about getting up stairs, we need to do something pretty soon about a small extention for a bathroom downstairs but the cost is another big problem.

Time for a kip i think, feeling so tired.
Its been a bit hectic since coming back, first off it was my local support group on thursday wich was good, a lovely bunch of people that seem to be very helpfull. One thing that was mentioned is they need a website doing and i did feel as though i was the target man to do it, which to be honest i would love to do it but im am very new to this website stuff and wouldnt really know where to start! creating this one on here was very easy but i dont think this type of site would be right, i will just have to see what happens.
Oh i also won a box of biccys in raffle lol.

Onto friday, it was a social event at my local coservative club which was a great night, plenty of people came along to help raise money. I ended up leaving about half 10 as i was feeling tired and very wobbly on my legs but by that point over £900 was raised which was fantastic. I really want to do something myself soon, just finding it hard to think of a good thing to do.

Finally saturday, it was a surprise 60th for my father in law, he had no idea and was well chuffed. The night went very well with plenty food, drink, dancing (not me lol) and laughs.

Had a good rest yesterday with my Polly and Alf which was badly needed! and caught up on a few of our programs.

Got my appointment for the first meeting on the new clinical trial for next tuesday, feeling good about the whole thing and looking forward to starting, i just hope i dont get the placebo!
Arrived back home at 5:30 am on thursday morning from our honeymoon, we had a great time with plenty of sun sea and sand. On that note the sea was a bit rough for me and i couldnt stay stood up in it for long and fell so i didnt feel too safe in it. The weather was great, very warm but with a nice breeze. The hotel was very good with plenty of nice food to keep you going. The hardest part was all the walking as the complex was huge, for some reason my walking was very difficult from the minute i got off the plane, im not sure if the 6 and half hour flight caused this or just another sign of things getting worse. For the full week i suffered with terrable pains in my calf which made walking very hard, we did get the odd lift on a linnin truck which helped but to be honest the place is not great for disabled people, i did not let this spoil our holiday though :-)
The thing i didnt notice was how i was looked upon by some ignorant people, they obviously thought i was pissed at 8am with the way i was walking. I quite often felt i was being pre judjed, some of the funny or looks of disgust i got was unreal. Getting through the airports quick and assisted on the planes obviously got up peoples noses!

After this holiday i will be very reluctant to travel too far and will always take my own wheelchair (when i get one) I will be going to Belfast, Menorca and disneyland later this year so i need to get more prepaired for strange looks and rather funny comments.

Massive credit  has to go to my Polly who had to do all the running round, haggling and sorting food/drinks out, she worked so hard and gave me so much support, i love her to bits, she is so so special.

I will add some photo's when i get chance.

Its good to be home!

I recieved a letter this morning to say ive got the opertunaty to go on the new clinical trial being rolled out :-) Its not like this is going to cure me or anything but its worth taking if there is a slight chance of prelonging things, it may do nothing and also it 50/50 placebo. One things for sure it will be my little part in maybe helping other poor sufferers in the future.

Another thing is i am 10 hours away from being sat in airport waiting to jet away from everything :-) so bearing that in mind i will not be updating for a week (thats if anyone bothers reading lol)

Be back soon.
Off work n0w for a few week and currently getting the final things sorted for our late honeymoon to Cape Verde, really looking forward to chilling out for a week. It will be interesting to see if i can still swim lol prob sink like a brick, maybe i need a rubber ring haha. One worry i do have is the coplex is very big and upon reading reviews they do comment on the amount of walking, this wasn't really a problem when we booked but now it seems to be a bit of an issue.
Whatever happens i will enjoy the break and the sunshine.

Ive been feeling quite sorry for myself today, very tired and achey. I think most people will have no doubt have been called useless at sometime in their life, more than likely in jest, but for me i really had the feeling that i am useless! watching people around me doing jobs i should have been doing with ease, bits of DIY, gardening, cooking, watching my gorgeous wife juggle a full time stressful job, housekeeping, looking after me and running erronds because i am worn out from 4 hours at work. I do realise that things will become far more difficult as time goes by, but i cant help feel sorry for my Polly, she's 36 and should enjoying her life.

A couple of things i have learnt being terminally ill:
1. How expensive it is
2. How amazing some people are
3. How i get funny looks parking in disabled places
4. How thoughtless some people are (especially those you claims from)
5. How enjoy some of the most basic things in life

I will nodoubt post some more on a post at a later date, maybe more of the good sides to having MND but for now i'm struggling to think of any.

Fighting My Losing Battle with MND.