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.
25/8/2011 12:41:18

Please don't wear yourself out too much tomorrow!! You are still so positive it's amazing - whilst you are still able to create this blog I will certainly continue to read it...feeling very sad for Tim LaFoulette's army - I followed his video blog too and it always saddens me when another person loses their fight. The other day you were talking about a hard-hitting campaign over here, possibly following someone's progression through the 'tosser' as you call it! I have just re-watched number 32 of his, 'A day in the Life' That alone would do so much to raise funds and awareness but I've no doubt it would be deemed too shocking just like Sarah's story. I thought that film was brilliant - terrifying but brilliant. I tried to follow up my application for Association Visitor training yesterday - I had put it on hold after Mark died - but the woman I needed to speak to wasn't there...feel ready to do the training now and help others so will keep chasing!! Keep your chin up and have a good day in Brighton - I look forward to hearing about it:-D

Sarah R.
25/8/2011 19:18:04

I just thought the finger curling thing was annoying... wait til your toes curl too!! LOL I didn't really notice it until some girl was admiring my sandals and told me she wished her toes curled because it is cute!! Puh-lease!! She can have my curled toes and all that goes with it! But all I said was, "Be careful what you wish for!"

janet parry
26/8/2011 17:33:39

I`am sure you will be running on adrenalin when you get to Brighton -but like Sam said try not to overdo it, look forward to hearing all about it-take care lol x


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Fighting My Losing Battle with MND.