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Thread: Rapid progression

  1. #1
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    Rapid progression

    Hello all,
    In the last month dad has lost the ability to walk, his right leg is dead, his shoulders are weak and cannot sustain him standing. His lips are blue, he drools a Bit. Hes got the air thing for breathing but hates it as he feels claustrophobic, behaviour becoming a little stressed and going in for peg fiting next sunday. Hes 7 stone. Is he in the final stages?

  2. #2
    Forum Member WendyWooG's Avatar
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    hi Coco
    it's a very hard thing to judge, as to whether he is in final stages or just very poorly through dehydration malnutrition and not using his mask.

    last week my mum was struggling with a naso gastric tube, she couldn't have a peg. She was also struggling to breathe even though her lung function was ok. she was sleeping all the time and we had the same worries. Earlier this week she was rushed into hospital as her windpipe had collapsed. We were told she needed an emergency tracheostomy and that is she had a very poor prognosis..

    today she is breathing.well through the tracheostomy tolerating food well, teasing the nurses and learning type to speech via an Ipad. you can never tell.

    it's vital to get the nutrition and breathing sorted. It is worth trying different masks to find one that suits. I am on Bipap
    24\7 I hate the full masks but get on fine with the nasal pillows.

    sending, you hugs and I hope that he can be made more comfortable.
    Wendy x

  3. #3
    Forum Member Ellie's Avatar
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    Hi Coco,

    Sorry to hear your dad is struggling so much. It's impossible to say if he's in the final stages - much depends on getting back to a good weight and on his breathing.

    He is very light, so he'll need a specialised feeding regime to gradually get his body used to getting full calories again. The hospital Dietitian will do this for him. Giving him lots of feeds per day from the start will not be nice for his tummy as he is quite malnourished.

    As Wendy said, there is a variety of masks for his breathing machine - some rest just in the nostrils which shouldn't cause claustrophobia.
    Has a doctor or nurse said anything about dad's "blue lips"? I'd hate for him (& you and your siblings) to be told at the last minute his breathing wasn't good enough to have a feeding tube fitted

    Wishing him all the best and hugs to you and your siblings,
    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  4. #4
    Forum Member Terry's Avatar
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    Hi Coco;

    I'm worried that blue lips is a sign that he is not breathing very well and this should go if he is using his breathing machine. I would get an Oxygen monitor and see. Also get someone out or go to doctor's, hospital or hospice and get it checked.

    I wonder why he has waited so long to have a feeding tube fitted?

    Love Terry
    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.

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    Hi all
    Thanks so much.
    Hes waited so long because he is terrifiedof hospitals. I was over today helping out, he seemed a litle brighter- i think ising the breathing thing (but only 2 hours a day!) is working. I helped him shower..crickey so much muscle wasteage.
    Thank you again, will keep all informed as he goes in on sunday.
    Keep fighting everyone

  6. #6
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    Hello
    Dad goes in for the peg on sunday, how long will he be in hospital do you think? What is the best way to support?

  7. #7
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    Quote Originally Posted by Coco View Post
    Hello
    Dad goes in for the peg on sunday, how long will he be in hospital do you think? What is the best way to support?
    I was in 24 hours as I was sedated during the op. Be positive thats the best way. As others have said about the weight gain. If you can get him to use mask for 4 hours plus per day it will make a huge difference. There are lots of masks to try. I use an amara view. Its really small and covers nose and mouth. Dont lose hope.

  8. #8
    Forum Member Terry's Avatar
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    Hi Coco,

    I reckon that he will be having a RIG feeding tube. I hope he is only in one night but because of breathing troubles and him going in Sunday I guess that it's longer.

    If he has trouble talking then the best way of supporting him is to be there all the time.

    Love Terry
    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.

  9. #9
    Forum Member Ellie's Avatar
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    Hi Coco,

    It really depends on how he copes with, and recovers from, the procedure as to how long his hospital stay will be. Because of his low weight, they should keep him until they know he can tolerate food. If his breathing is of concern, that may cause delays too. I hope it'll all go smoothly and he'll be out in a few days, but I don't know if it'll be a short 24h stay.

    I know your dad's voice was quite weak but don't know if he can still talk? Either way, having sheets with helpful phrases, an alphabet and his likes & dislikes printed out is a good idea. You might find these helpful:

    https://www.amyspeechlanguagetherapy...oard_color.pdf

    https://www.amyspeechlanguagetherapy...hospital_2.pdf

    https://www.amyspeechlanguagetherapy...hospital_1.pdf

    FWIW, you should tell the hospital how scared dad is of being in hospital - it may count for nothing, but it should!

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  10. #10
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    Thatnk all. Lovely comments and the support from you is very appreciated
    Mny many thanks

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