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.
These dark nights are closing in again ;-( did we have a summer? its so depressing when it starts going dark early! before you know it we will be sat in darkness at half 4 in afternoon.
Well ive got assisted technology coming tomorrow after letting me down other week, then its off to hospice for my second massage, hopefully chill me out before our big journey.
Those of you who looked up Tim LaFollette after i mentioned it the other day may already know, sadly Tim passed away this morning, i feel for his wife, family and friends at this sad time.
When i watched the episode "a year to remember" i choked up by it, the speed in which he progressed was shocking and a true reflection of how lethal this tosser of a disease is, its things like this that we need to make people stand up and take notice.
I guess i should feel lucky, lucky that nearly 14 months in i am still fairly mobile and my worst limb can still move, although not a great deal, in a way i do feel a bit lucky but to be fair us unfortunate enough to have to tackle this tosser are in no way lucky.
On a more positive note their has been a few things within research that sound promising, the drug trials could really be something pretty special, the NP001 is being raved about on various forums and those participating have been putting some very interesting evaluations on PLM. I cannot pretend i know what im talking about here because i dont, a lot of the talk on the MNDA forum about this goes over my head lol i do have to admire those that do take so much of their time looking into it all and posting details for us to read, thanks to you all.
I do hope something will come of all this and help drasticley slow, stop or even cure this disease (or tosser as i will now call it)
I am glad some of you guys found my fall funny, reading it back its like something Frank Spencer or Mr Bean would do lol. When i told Polly what happened she went a bit mad at me for going outside but once she calmed down the laughing and taking the piss started! I guess if we can look back on things like this and laugh its time to give up. For the record my bum cheek has recovered ;-)
I would comment directly but still having probs with it so please dont think i ignore them, i read them all and appreciate everyone who takes the time to comment.
Friday is a day i am not looking forward to, we will be traveling to Brighton for my cousins wedding, the wedding is something i am looking forward to but the 8 hour drive on a minibus is giving me nightmares. We will be there till sunday so i will no doubt be fit for nothing when we get home.
Recently ive had a few emails of encouragement and links to other things, one i found interesting was The Often Awesome Army, its a guy called Tim LaFollette who was diagnosed with Familiar ALS at the age of 29 and has a series of videos. Check out my links page to see more. If you click on web series on the top right of the web page you can watch the videos from the begining, im currently half way through.
Last i had quite a scary moment, i went to bed about half 10 and got a bit of sleep then woke up around 1am, after lying there for what seemed hours struggling to get back sleep i got up and came down to watch TV, it was about 2:25am by this point, a small brandy was poured and i decided go in garden for a smoke, as i stepped out i lost my balance and fell straight back landing on my bum and arm, how i didnt smash the back of my head on flags i dont know, anyway being only in my dressing gown i was stuck flat on floor, nothing within reach to help me get back up, every move was made worse wrestling with my dressing gown, it took for me to wriggle out of if then drag myself across the floor into the house were i could then use the dining table to assist me getting to my feet. It was a very scary 15 mins, nobody new i was outside and probably wouldnt have heard me if i shouted, not very pleasant. Now my bum is sore as hell lol. Maybe the fishing trip has took its toll on me as i am feeling very weak at the moment, legs are terrible.
My riser recliner was sat here waiting for me when i arrived home ;-) so chuffed with it, so much so i was flat out on it yesterday lol. Big thank you to all who got this sorted for me. The only problem is when i do get off it Alf has parked his fat arse on it the little bugger.
Been to support group tonight and got things sorted for me going the AGM at stanstead which i am looking forward to, meet a few people off the forum so that should be good. Also gonna be going for a curry and a few beers with another member who has booked to stay over near here, i just hope he comes in that flashy motor, know what i mean ZED ;-)
Were do i start with this fishing trip, it was fantastic, as you can tell i didnt drown nor fall in lol.
Now this place is thee best day ticket carp fishery in the country and as i have said i used to go there a few times a year but this was special. Len who runs the place had lost his wife to MND and Fran who is now Lens partner also lost her husband to MND so as you can imagine this event was very important to them both. Led allowed my friend and me to attend at no cost and was really happy for us to come.
We arrived there around 7:30pm on Sunday after a 3 hour drive and was greeted by Len and 3 other guys, Mark, Steve and Martin and shown were we was going to fish. It was too late to mess about getting fishing rods sorted so it was just a case of setting bivvys (tents) up and then go for something to eat and drink down at the other end of the lake where all the celeb anglers were, all the paying guests wasnt arriving till Monday morning, we got there and i started to spot ones i had seen in magazines and on DVD's, it felt very unreal, a few burgers and drinks then we fizzled away to our bivvys for a good kip ready for the fishing.
Monday we got up early after a bit of crap nights sleep, i struggled on the bedchair, especially trying to get off it! we had breakfast up at the meeting point then came back and started to get fishing. Mark and Steve, which are 2 of the best carp fishermen in the country were awesome, they dont like the fame side so keep out of it but know and fish regular with all the big names. They helped my mate who is also called Chris get sorted fishing, he is known to us as Bris to save confusion but they named him baldy chris lol, i was hairy chris! That day got quite hot and the fishing was tough, throughout the day various known anglers came round to see us, to Mark and Steve this was pretty normal, to me and bris it was amazing! We had the editor of a magazine Simon Crow sat with us most of the day and saw bris catch his first fish, only 14lb but great, after that it was "right hairy chris, its your turn next" they were determined to get me bring a fish in, but with arms like cotton i wasnt confident. The highlight of that day had to be when John Wilson and Martin Bowler walked into our peg and started chatting, starstruck is an understatement lol John Wilson is a legend, i grew up watching him on Go Fishing, just fantastic. Bris did catch a few fish before i had a go, it was on the Tuesday, one of Steve's alarms blares off and he got the rod and started the fight, then i had to step in, it took bris togrip my right hand on the rod and i reeled with my left, Steve also supported the rod and Mark waited with the landing net, a four man operation lol, after about 10-15 mins it was in the net and weighed in at 24lb 6oz, i was over the moon!! Now Mark does wedding photography so he took some of me and bris with the fish, bris holding it and me at the side, then Martin Clark came and took some of all four of us wich are going to appear in magazines and maybe even in a book that Martin is writing ;-) i believe you will see some in thumbprint mag too. As you can imagine i was pretty worn out after that.
One of the Stars called Derick "the Don" Ritchie was hilarious, he must be about 60 and he had his van blasting out dance music at the meeting point and dancing like an 18 year old lol a very funny man, you will see what i mean when i get all the photo's.
I met and had a chat with a few from the MNDA local support group and a lady called Kirstine Knox who is the CEO in the MNDA and she was lovely and assured me if i needed any help dont hesitate to contact them, again a thumbprint picture may appear.
There is so much i could write here but my arms killing, ive had do this in two parts.
The event raised over 13 and a half thousand which was a fantastic result and has convinced Len to do it again next year which i hope i can get to.
My biggest thanks to Len for allowing me to attend and making sure i had a good time, he has also said if i want to go fish anytime let him know and he will sort it out.
Thanks to Fran, Adam and the rest for all the food and their hard work.
Thanks to Mark and Steve, great guys and top anglers.
Thanks to Bris for doing all the hard graft sorting me out, getting my food, drinks, etc.
I will never forget this trip and enjoyed it so much, even my little scooter has battle scars to remind me lol. I will post pictures as soon as i get them.
Ive not had chance to post this with being away for a few days, anyway as i have mentioned before about my cousins doing a sponsored bike ride from Anfield to Old Trafford, a total of 35 miles, now these guys, well the girls have only ever rode a bike around the block lol a total of about 100 yards so this was going to be tough. Well on the 13th August they did it, absolutely amazing i must say, i am so proud to call these people my family.
I did meet them at there half way point and had a quick drink, few photo's and a chat, then as they left Polly and myself set off to the finish line, now unfortunately we didnt make it, getting into the center of Manchester we got shunted from behind coming off a roundabout, no major damage but it did shake us up a bit and my sore neck (from the falling out of bed) seemed to flair up! we thought it was best to get home. Luckily the finish was filmed so if you wish to see the brave bikers check out below.
Just getting ready to go Oxford for the charity event, we decided go today to save rushing and being shattered tomorrow. Hopefully my old tent will be up to the job. A bit nervous about going still, how much it will bother me not being able to fish is a bit of a worry but at least its a chance to chill out and switch off from the real world. Should have plenty photo's to show off when i get back, if i havent fell in lake and drowned lol.