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  1. Replies
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    I might have known you’d have excellent advice!...

    I might have known you’d have excellent advice! :-)

    I was in touch with my MND clinic today and they suggested increasing my Carbocistein dose and has already been in touch with my GP. They also...
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    Saliva problems

    Hi all

    Iím sure this has been asked before so apologies for the repetition, but Iím having trouble with my saliva at the moment. Itís thick and excessive and I have trouble swallowing it. Itís...
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    Thanks Debbie & Ellie Good idea about taking...

    Thanks Debbie & Ellie

    Good idea about taking the feed via a syringe while I slowly build up my tolerance to the pump. I don’t like doing it as it takes so long but I will if necessary. Been...
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    Thanks Ellie To say I’m fed up is an...

    Thanks Ellie

    To say I’m fed up is an understatement! Last week was one of my toughest yet since diagnosis. I’m losing weight and feeling quite weak so we need to get it sorted ASAP. Tried a new...
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    Hi Ellie Not good unfortunately. I developed...

    Hi Ellie

    Not good unfortunately. I developed tendonitis and was put on cocodamol which I was the cause of what turned into chronic constipation, despite taking a laxative. I was in absolute agony...
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    I think I have a back pack that the Abbott nurse...

    I think I have a back pack that the Abbott nurse gave us somewhere- we’ll dig it out as that will be ideal for pootling about, as you say. :-)

    2 successful nights now - yay!

    As an aside, I had...
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    Hi all Iím pretty sure itís not an underlying...

    Hi all

    Iím pretty sure itís not an underlying problem as the diarrhoea was only happening in the morning. Last night I had 600ml over about 8 hours, so at a slower rate (& Imodium) and...no...
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    Hi Ellie Thanks so much, this is, as ever,...

    Hi Ellie

    Thanks so much, this is, as ever, really helpful. When you say you take Lansoprazole, what form is that in? I'm on it too, tablet form (it's a chalky consistency so melts in my mouth). I...
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    Thanks Rachel I’ll speak to my dietician...

    Thanks Rachel

    I’ll speak to my dietician again and try doing it over a longer period.

    Regards
    Sarah
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    Question about overnight pump feeding

    Hi

    Iíve been pump feeding overnight for a short while now but wake each morning and have a dose of diarrhoea. Weíve tried a couple of different types of feed but itís still happening. My wife...
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    Advice from those who pump feed

    Hi all

    Iíve been pump feeding overnight for a short while now but wake each morning and have a dose of diarrhoea. Weíve tried a couple of different types of feed but itís still happening. My wife...
  12. Thread: Sad News.

    by SarahWP
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    Oh Mark, this is such sad news. Thank you for...

    Oh Mark, this is such sad news. Thank you for taking the time to tell us and explain the circumstances. I struggle with my diagnosis too a lot of the time and can completely understand her actions...
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    Hi Sarah I’ve just had a Headmaster’s neck...

    Hi Sarah

    I’ve just had a Headmaster’s neck support fitted and it’s fab. Not nearly as scary as its name suggests!

    https://www.performancehealth.co.uk/headmaster-collars

    Hope this is useful....
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    Thanks all - I hope you continue to enjoy it....

    Thanks all - I hope you continue to enjoy it. It’s quite therapeutic for me!

    Sarah x
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    Iíve started a blog!

    After some (not so) gentle persuasion, Iíve decided to start a blog on my life as it is now, living with MND. For the most part these will be cheerful posts tho some will inevitably be a little less...
  16. Thread: Voice Banking?

    by SarahWP
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    Following on from what Doug said, depending how...

    Following on from what Doug said, depending how bad her speech is, she could have someone else record the sentences for her if they sound fairly similar. I myself recorded 70% of mine and my wife...
  17. Thread: At peace now.

    by SarahWP
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    I’m so sorry to hear this. Sending you and your...

    I’m so sorry to hear this. Sending you and your family love and condolences. Sarah xx
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    Haven’t been out in the WAV yet - we’ve had non...

    Haven’t been out in the WAV yet - we’ve had non stop visitors the last couple of days but plan to get out and about this weekend!

    Sarah xx
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    Thanks Ellie, I’m hanging on to this belief...

    Thanks Ellie, I’m hanging on to this belief desperately as hearing my prognosis so starkly knocked me back somewhat. Even if it’s true tho, all the more reason to enjoy every day as much as possible....
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    Yes indeed, a wonderful attitude. And you’re dead...

    Yes indeed, a wonderful attitude. And you’re dead right about appreciating the things we can still do. I had an appointment at the MND clinic today and was told, given the speed of my progression, my...
  21. Thread: She's Gone

    by SarahWP
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    So sorry to hear this Chrissie. Sending you &...

    So sorry to hear this Chrissie. Sending you & your family much love at this painful time.

    Sarah xx
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    Oh dear, not our best performance! But we don’t...

    Oh dear, not our best performance! But we don’t mind losing to Ireland too much. :-)

    Na. I’m a Wales supporter through and through - & not just because Sue would probably divorce me if I wasn’t!...
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    Hi Ellie I was just thinking of you, funnily...

    Hi Ellie

    I was just thinking of you, funnily enough- wondering if you’re watching the rugby?!

    Yes all went smoothly last night & I slept really well too so definitely think this is the way...
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    That’s a very kind offer but I’m in Wales &...

    That’s a very kind offer but I’m in Wales & you’re in the US??
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    Thanks Doug - very wise and helpful words. I’ve...

    Thanks Doug - very wise and helpful words. I’ve always been pretty good at accepting change and getting on with things and would say I was also for the first few months into the MND. It’s only...
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