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    Thank you so much everyone

    Thank you so much everyone
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    Thanks everyone. We had many good years before...

    Thanks everyone. We had many good years before this so were very blessed.
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    Gone far too quickly

    Hello everyone
    Iím sorry I havenít posted very much. I started with good intentions but events took over rather more swiftly than we could have imagined.
    My beloved OH had the first symptoms at the...
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    My other half has just been given a penis pouch...

    My other half has just been given a penis pouch catheter. It’s really simple. It’s literally a pouch that sticks over and around the penis and he has a bag strapped to his leg for daytime and a stand...
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    Wow Hilary...you write so bravely and so...

    Wow Hilary...you write so bravely and so beautifully about your Chris. I’m so sorry for your loss.
    Unfortunately my husband, Dave, has a similar progression to Chris. His first symptom was in early...
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    My husbands feet are always cold, except when...

    My husbands feet are always cold, except when they’re sweating...which is regular too. But he also experiences shivering, although he doesn’t feel cold at the time. It’s not fasciculations, it’s...
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    The toilet we got doesn’t use chemicals, it’s...

    The toilet we got doesn’t use chemicals, it’s just water and disinfectant. This means I can flush it down the normal toilet
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    Wecky, I do feel for you, and I understand your...

    Wecky, I do feel for you, and I understand your frustration. But really, your symptoms sound nothing like MND. Fasciculations happen all the time to many many people, but very few actually have MND....
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    Wecky...you almost seem to be trying to convince...

    Wecky...you almost seem to be trying to convince yourself you have MND! Nothing that you’ve described in ANY of your posts sound like it. Unless, and until, a consultant tells you differently, I...
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    Hi Iv I’m sorry to read of your situation. I...

    Hi Iv
    I’m sorry to read of your situation. I can’t even imagine how you are feeling, but please know, that despite everything, there are people on this forum who are thinking about you and praying...
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    That’s not a bad idea Terry. I’ll put no.1 son...

    That’s not a bad idea Terry. I’ll put no.1 son onto the task! Hubby was extremely practical pre MND...and I’m hoping he will be again, as he has quite an inventive mind. I’ve decided he needs to...
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    954 So this is what he’s using. It’s a basic...

    954

    So this is what he’s using. It’s a basic cassette camping toilet with a commode chair over. He has the loo roll attached to the removable arm! The only thing he can’t do is pull the flush...
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    Hi Twinkle...no he is ok about the camper toilet...

    Hi Twinkle...no he is ok about the camper toilet as it makes his life much easier. It has a commode chair over it so he has the arms to grab onto. I think he feels better about the camper loo than he...
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    I don’t think it matters. It’s whatever works...

    I don’t think it matters. It’s whatever works best for you and your husband. Hope you are able to make some good decisions very soon. Good luck with it all xxx
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    I’m so pleased for you Annie....at least you can...

    I’m so pleased for you Annie....at least you can be upstairs for another season! Hopefully your new bathroom will make life easier for you too xxx
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    Thanks Debbie. I’m sure it will all work out, we...

    Thanks Debbie. I’m sure it will all work out, we just need to be patient. (I’m not very good at that! ;)j
    I’m sure you’re going to be much more comfortable...and safe now. I really hope it works...
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    Thanks Ellie...we’re doing ok. I make it sound so...

    Thanks Ellie...we’re doing ok. I make it sound so bleak, which I really don’t mean to! We have a super helpful team around us, and they are trying to move mountains for us. It all takes time of...
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    We’ve got similar issues Twinkle. Our house is...

    We’ve got similar issues Twinkle. Our house is very old and not at all suited to adaptation. Our bathroom is downstairs but hubby is unable to get to it at the moment. He is sleeping in what was our...
  19. Thread: Respite

    by Namay
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    Hi Have you heard of the Carers Trust For All?...

    Hi
    Have you heard of the Carers Trust For All? This is an organisation which will organise emergency care if a partner or carer can’t. Your partner might be prepared to leave you knowing that this...
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    Hi Stevo My husband was diagnosed at the end of...

    Hi Stevo
    My husband was diagnosed at the end of July, having only had symptoms for a few weeks. He’s now confined to a wheelchair. His progression has been very swift.
    I’m so sorry you’ve...
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    Poll: Our GP picked it up first visit, so I think we...

    Our GP picked it up first visit, so I think we were extremely fortunate. But she said that in their career, a gp might see 1 or 2 cases of MND, so it is very difficult for them, especially when there...
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    We don’t have a hoist yet, although we’re rapidly...

    We don’t have a hoist yet, although we’re rapidly heading that way! So that technique might work for him then, thanks mickmac.
    We did wonder if braces would help! We’ll give it a go. Thanks Andy
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    Trousers and pants!

    Morning everyone!
    Does anyone have any magic solution to pulling up trousers and pants?! Even our OT canít come up with anything sensible. Hubby has pretty much no mobility in his legs, lower trunk...
  24. Thread: Housing

    by Namay
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    Lynne, I so hope you get your bungalow, and...

    Lynne, I so hope you get your bungalow, and quickly!
    We are in a similar situation, but we’ve managed to turn a ground floor room into a bedroom for my husband. Our OT is amazing! She’s got council...
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    Hi Sarah..the other option, if you prefer not to...

    Hi Sarah..the other option, if you prefer not to take medication, and if your gp thinks it’s suitable, might be a coil. They also stop periods altogether.
    I hadn’t even thought of this problem for...
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