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  1. #11
    Forum Member Dude's Avatar
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    Coco Ask away, the answers are here. Progression is different for each of us. I got diagnosed 10 years ago mnd pbp . What are your ages. Dude x

  2. #12
    Forum Member WendyWooG's Avatar
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    hi and welcome
    its all scary at first. I am just at the stage of thinking about a feeding tube before my breathing gets too bad. Lots of people on here have found them beneficial, I find that very reassuring.
    Wendy

  3. #13
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    Thanks to all. Are protein shakes any good, they help muscle mass..again- a stupid question!

  4. #14
    Forum Member Terry's Avatar
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    Hi Coco,

    His dietitian will prescribe drinks that are a balanced diet and these could be higher protein ones.

    You can make up shakes etc.

    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.

  5. #15
    Forum Member Dude's Avatar
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    Coco I have been on Ensure shakes for over 2 years and I am never hungry. 4or5 strawberry ensure, 6 tea and maybe 8 juice, all thru a straw. Sorted. Nothing builds muscle mass but keeping all joints moving is important. My carers massage my hands and feet. Dude xo

  6. #16
    Forum Member Streetwise's Avatar
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    Hello I think protein shakes are designed around doing strenuous movement, I don't know what effect it would have if it's just your muscles moving but not your bones when I cried one they seemed way too sweet to me
    I think add the fact your muscles are actually being moved much faster than anyone exercising ,I remember from my mams Weight loss that I don't think protein shakes are going to put on a lot of muscle ,that's why you need meal replacement drinks, you need fat and carbohydrate as well.
    Last edited by Streetwise; 5th November 2017 at 11:55. Reason: Panic

  7. #17
    Forum Member Ellie's Avatar
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    Hi Coco,

    Those whey based based protein shakes won't bulk up dad's muscle mass lost through MND..

    As others said, eating a balanced diet is best and he can get advice from his Dietitian.

    Getting a feeding tube and using it sounds more scary and daunting than it is in reality. If you want to know more about feeding tubes, take a look at:

    http://mytube.mymnd.org.uk/

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

  8. #18
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    Thank you
    Thats very very re-assuring, and thanks to all

  9. #19
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    Hello, suffen weight loss, back bent double and hand power loss, is this rapid progression, ? Dad seems to have lost more weight too

  10. #20
    Forum Member Streetwise's Avatar
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    Compared to some people yes,but I've heard of people who were diagnosed (this but it might be hard for you to hear and traumatic )but they've died a month later, it's relative.
    Try to stop when you feel panicky or anxious and listen to your breathing ,take a breath ,I've said before my mother lived for three years nearly after diagnosis also the way the person is cared for extends their life it can change and then plateau for a while what happened with my mother

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