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Thread: Rapid progression

  1. #11
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    Dad went in today and he came out! With peg! Hes recovering well. God, the NHS is amazing. Thanks to all for advice ao far, webe used it and its empowered is. May be in for a few more days but thats ok. Just need him to get to ise the air machine overnight
    Thankyou all #keepfighting

  2. #12
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    Cool. Glad all went well. Start slow with the air. An hour a day and work up to at least 4 hours in one go. Can make a big difference,

  3. #13
    Forum Member Terry's Avatar
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    Good to hear, Coco;

    Hopefully they are using it and he will be home soon. Great that the NHS have steeped up to the mark.

    Love Terry

    As Ellie says below, Getting more air in his body is probably as important as getting food in, so try to use this opportunity to see and try different things if possible.
    Last edited by Terry; 10th April 2018 at 12:30.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #14
    Forum Member Ellie's Avatar
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    That's great news Coco!

    I know he'll want to get his head around the feeding tube first but, given he is in hospital, it'd be really good if someone from Respiratory came to see your dad and see if he could use a nasal mask with his BiPAP breathing machine (not everyone is suitable for nasal masks) They might let him try one out during the day.

    If that doesn't happen, he can try getting used to wearing the mask for short periods when relaxed at home - just the mask, no hose, no air - sitting in his favourite armchair, watching telly or whatever relaxes him. Then build on that.

    Best wishes to dad.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  5. #15
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    Hey all. You are an amazing bunch of people, thankyou. Hes been annoyed today as theyve done a dementia test as he was confused when he awoke, but we think its because of the happy operation juice! We cannot thank you all enough, it means such a lot
    Keepfighting

  6. #16
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    Hello
    Dad been home a day, fell over last night at home. Waited several hours for ambulance- all very good to him. Is his lack of walking in hospital due to his being weak? District nurse has told him hes now not to walk. Any thoughts?

  7. #17
    Forum Member Terry's Avatar
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    Oh that's a shame Coco;

    Lack of walking in hospital didn't help. Do you know why and how he fell, was he using a walker, etc?

    Whether he should walk depends on if he can do it reasonably safety.

    Can he still use his hands and arms to pull up, if so he could maybe use a stand aid to try to exercise his legs a little so he can get used to the muscles moving again. Make sure he does this safely with a soft chair under and behind.

    It would be good to get his OT out and physio.

    Is his feeding tube OK?

    Love Terry

  8. #18
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    Hi thanks all. Fall due to his legs just packing in. Ive showered him today and it was a challenge to get everywhere clean. Interesting, he had his air mask on this afternoon and slept, when he awoke he told mum hed dreamt about his dad, and that he had adjusted the breathing machine and then disappeared into the garden. Comforted him.

  9. #19
    Forum Member Ellie's Avatar
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    Coco, the PEG procedure would've knocked him for six and left him weakened (it did me in and I was in good health!) Hopefully he'll recover to his pre-procedure self with rest and feeding.

    If your dad doesn't have a wheeled shower chair-commode, ask his OT for one as it will make showering easier and safer for you both. Actually, now is a good time for an OT assessment/review.

    Glad your dad took comfort in his dream and he's using the BiPAP!

    Look after yourself Coco, don't wear yourself out...

    Hugs,
    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  10. #20
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    Thankyou.
    Mum hurt her back today so hes not been out of bed, so going over tomorrow after work to clean and sort them both. This disease does make you think about life, family and death.good idea re the shower commode!
    Cheers all

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