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Thread: bulber onset and peg

  1. #11
    Forum Member Katrina36's Avatar
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    Quote Originally Posted by staney View Post
    Katrina

    Thanks for the advice, as you say a lot to take on board. I've been trying to get him to join the site for hints and tips but he's reluctant to do so at the moment, but I will keep trying.

    Hi, dad was exactly the same, he didn't want to join the site but spoke to people through me.,, that seemed to work for him. Maybe you could do that for your friend also. Maybe you could gradually tell him bits and pieces about people that have been through the same, didn't want the peg etc, and were reluctant like him, maybe he will come round when he's ready., it will be a lot for yourself to take in also, so if there is any questions you would like to ask, feel free ... katrina x

  2. #12
    Forum Member Dvd's Avatar
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    Hi Stanley .. I just want to give you an inside view about my friend who has Bulbar diagonised A year ago next week ..
    Before this we went out quite a lot as we were both retired ..it was a case of we were never at home ..then the dreaded news about Bulbar MND .. my friend went into hospital for various tests to confirm and when confirmed they chatted to him about a peg fitting .. never having been in hospital all his life this was all a lot to get a head around but he decided to go ahead with the peg fitting and said if I don't like it I can get it out again ..he had a Rig placed and got home the following day
    At this stage he was able to eat a soft diet and have thickish fluids .. over the coming months he had to adjust to pureed good as his choking was getting worse . A short time later the choking got so bad he decided to be tube fed and was very thankful the rig was in situ was ready to go ..after peg feeding the choking stopped so not as much fear now of him aspirating .. he takes his ensure 6 per day plus lots of fluids and medication which he can do himself via his Rig . He gets his feed etc by means of bolus feed so no need for a machine to be hooked up to .. all feed etc goes into a large syringe ( no needle on it ) and pushed through the tube.
    Now to get to the point that we both were so glad about .. as I said we were always out, out ,out and about .. when choking started we did not get out as often .. then at a stage we hardly ever out as it was quite difficult to get pureed foods so it was much easier to remain at home .. both of us thought at that stage .. well that's life .. BUT !!
    Now with the peg feeding we are back on the road again as the feed meds etc can be given anywhere ( just make sure the environment is clean around where we are ) so the peg was a blessing as it let the both of us get out again and back to a normal ( ish) life again
    Just thought I would pass that onto you ..perhaps your friend will reconsider if he reads this post
    Dvd
    Last edited by Dvd; 9th November 2016 at 14:10.

  3. #13
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    Thanks DVD. My dad's having his RIG fitted at the end of the month. I am hoping that it will take all the stress of swallowing, choking, finding things he can eat, out of his life. It sounds like it worked perfectly for your friend, great news!

  4. #14
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    Thanks Katrina and DVD,
    I was telling him about the site yesterday and he was really interested in the advice he was getting from everyone, although he still does not feel like joining yet. But I will keep trying.

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