Ive come to the conclusion my body is in rewind, its like going back to being a baby, cant bath myself proper, dress myself, eat without getting it everywhere, make meals, walk like ive shit myself, cant write, struggle to hold a cup, this list goes on! I will be in friggin nappies soon lol. I really do think its like going backwards, this was confirmed today when Polly was getting ready to go out (that school reunion thing) oh and she started getting ready over 6 hours ago! and i thought it took me ages. Anyway she said have i got someone coming round tonight? well no not really, you best get someone because i cant leave you on your own! great i need a bloody babysitter. Its another one of those reality checks, im not safe on my own, more so at night.

On the positive side my recliner is coming on Wednesday, oooooohhhh great stuff, i found this out when caught short in my bloody dressing gown this morning when my care team visitor arrived! I totally forgot she was coming lol and they say ALS doesnt affect the mind, well its doing my memory in.

Its now 12:15, ive had a few beers whilst watching Naked Gun 2 and a half and about to tackle the stairs to bed, Polly is likely to wake me up about half 3 in the morning by turning light on and staggering round looking for her pj's lol also will no doubt tell me all about her night out. Ahhh sod it, i'll have one more beer ;-)  

Had my first proper visit to hospice and had reflexology, yes feet! nightmare lol but to be honest it was good, the young lady that does it all is lovely and makes you feel very relaxed, very brave to tackle feet lol i cant think of anything worse.
The dietiton also came yesterday and gave me some good advice on eating, we need to plan meals more especially when polly is out all day.

Next week is the charity fishing event in Oxford for the MNDA, i should be travelling  down there monday morning, a little nervy still but maybe once the beer starts flowing i'll be ok ;-)

Hollie is having a great time in Wales with her nani and papa, she's got me some shells and pebbles. Missing them all.

Thanks to those that have done my little survey ;-) all positive so far lol.

The extension plans have been submitted today, fingers crossed we get the go ahead and we can finally get it started. I cant wait to at least have a toilet downstairs ;-) i will however miss being able to have a bath, instead it will be showers!
Assisted Technology bloke was meant be coming out today but phoned to say they are unable too, thats after me being sat here waiting till after dinner! i was looking forward to it.
Tomorrow it is Dietition in the morning and massage at hospice in the afternoon, lets hope it all goes well.

Comments, i am having a problem when i try to reply to comments, the colour seems be messed up when i leave on and you can hardly see it! Again this is doing my head in with the limitations aaaahhhggggg The idea of changing website is coming closer, i just dont want to lose all this blog. I was trying to reply to my post about the MNDA campaigns, so in reply.
 
Yes Steve i do remember reading your thoughts on the subject and you seem to think very similar to me, we need a different way and TV advert seems best, unfortunately its the cost, little funding, little awareness, little to spend, its a vicious circle. I would gladly donate the £10 but getting enough people to do the same would be tough.

Sorry for yesterdays post, it was quite long winded and had been on my mind a while, i just had get it out lol, back to my usual waffle!

You may notice the survey page i have added, its under more on the tabs at top, i have done this to just get a bit of feedback on whether i am doing the right thing, its totally anonymous so dont worry i wont hunt you down if you say its shit lol. 
If you can please take a minute to do it, theres only 4 questions, thanks in advance.

Ive been thinking a lot about this ever since a read Pollyanna's thoughts on it. I feel the incurable optimism thing is great, Patrick is an amazing man, when you look at all he has done and still doing is fantastic and now there is Alistair who to be honest i dont know much about. Patrick has come up with some great inventions and ways around things, i wish i could be as optimistic as him, he has gave good and rather blunt opinion's on things ive posted in the past which looking back was spot on. 
I did not know anything about MND before i got diagnosed and once told i found out thats what Steven Hawking had, for years i knew of him but not what was wrong, maybe its my ignorance or that nothing really stands out raising awareness. 
Shortly after i came across Sarah's Story, if you havnt seen the advert you should take a look, its hard hitting and scared the life out of me when first diagnosed, but it sticks, it sticks in my mind how ruthless this disease is! 
This is my opinion and please dont be offended.

When i see Sarah i think MND straight away, devastation.
When i see Patrick i think a fantastic man, inventor, painter and writer with MND.
When i see Alistair i think musician with MND, who i know little about.

Obviously there will have been many more campaigns that i am not aware of and probably need to look up more about aswel as Alistair.
 
I always thought the adverts you see appealing for donations and raising awareness tug on your heart strings, show you how bad things are, i am fully aware the MNDA have very little funding and averts, posters, etc cost, big time but maybe going in the hard hitting direction would be better, show the devastation, heartache, nitty gritty. Maybe this doesnt work! maybe it does.

How about an evolution style, showing someone in full heath deteriorate over year 1, then 2, then 3 then 4, then 5. To be honest i am not really in a position to come up with the ideas and im glad, it must be difficult.  Its great all the work thats done by all involved and i wish them all the best in raising awareness and i hope ive not offended anyone, after all this is just my thoughts written in my blog.

Went for my month 2 vist and i am worn out, felt like a human pin cushion! bloods after bloods after bloods, i didnt think i had that much in me lol, at least thats the worst one out of the way. On the positive side my weight seemed to have gone up a bit and my breathing was better which was a shock, 93 compaired to 86 at the start ;-) maybe its because of the breathing exercises ive been doing, TALKING lol. The staff there are great and very friendly, oh and a bit mad lol.
Goto thank my buddy for taking me and sitting there all day ;-) Well Polly did make him Danny and myself a great curry for tea last night, with starters too, she worked very hard to make the curry from scratch, she's a star!

You can tell i have too much to say at times lol. 

Came across a blog through PLM by a guy called Steve Evans, i read through right from the start and thought it was a great blog, it really made me think! so jealous he got to meet Jenson Button! Anyway its well worth reading so why not have a look, just goto my links page, there are a few there if you havnt noticed already. 

Off to the trial clinic tomorrow and its going to be a very long day, over 8 hours due to me opting to having bloods taken at intervals so they can see how quick the drug gets absorbed or something. I opted for this with the thinking that maybe if i was willing to do everything they asked it may increase my chance of getting the real drug! im probably way off the mark but you never know, why would they go to all the trouble of checking how the drug is absorbed if it was a placebo? its probably just wishful thinking lol.

Still seem to be losing a little weight and patchy sleep, other than that i am fine. This will be my month 2 visit, a possible 16 more to go.

I have been given a couple of things to make life easier, an easy grip knife and fork and a new toweling dressing gown :-) which does weigh a tonne but saves me wrestling with a towel.
I have also spoken to my OT about the riser chair and between her and my very helpful home visiter something may well get sorted soon. Also assisted technology are due to come and asses me, it was meant be monday but ive since realised i am at hospital.


Also thank you very much for my second donation :-) im on a roll lol. I tried out the text donating option before and it works great, so please if you can, donate, every penny counts, Thanks!

What do i say! It was a great night with lots of prizes, unfortunatly i only won a pair of pink slippers! The turnout was amazing, i think there was over 170 people all in all. I didnt feel quite like the freak i thought i would, the atmosphere was buzzing and everyone enjoying themselves. We had the Disco Diva's who were fab, my uncle Brian did some singing and was excellent, a tombola which was run by my Aunty Val and Uncle John, stand up bingo, the raffle which went on for quite a while because of all the brilliant prizes that were donated and the disco! Plenty of old faces i hadnt seen for a long time along with the regulars.
So much work must have been put in to this all for little me, how do you thank so many people for what they have done and doing? I cannot thank them enough, im not sure if any of my family/friends know about or read this blog, if you do, Thank you all so so much, i love you all.
The highlight for me was at the end when they played You'll Never Walk Alone, at bit ironic those words because soon i wont because my legs are going lol, but thats not what the songs about, those who know football will know its my beloved Liverpool FC anthem, basically through thick and thin we will stick together. So it came on and everyone started to get up and link hands in the air, swaying and singing, even the bloody Man United fans got up which i know must have been hard. As the end of the song neared the DJ turned to me and said "Chris, you will never walk alone" How i managed to not become a blubbering wreck i dont know, a lump in my throat the size of apple! it certainly brought a few tears around the room, its something that will always stick with me and the song will be with me at the end.
What everyone is doing for me/us amaze's me, i guess i am very lucky to have this support around me, some PALS have very little or nobody which must be so difficult and i really feel for them. If anyone reads this who does feel alone or just needs someone to chat to dont hesitate to contact me, I may not have all the knowledge of MND but just to talk rubbish im ya man!

I think so far they have raised over £3000, with a percentage going to the MNDA. The fundraising has continued today with a minibus full of them going to Doncaster for the Challenge Cup semi final with Castleford and Leeds, i wish them all the best and again thank you xx


A couple of pictures have been added, not too many though because some my not want their pic broadcast.
Check the photo's page.

My arms aching now lol so off for a rest, i do have a bit more to add about other things so should be back later.