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  • Boden1986
    replied
    Hi,

    My dad was supposed to have a peg late march but covid stopped that. by the time they got round to it they took him down and it was too late for a peg so they decided on a Rig. He was then discharged and back in a few days later.

    The Rig helped massively, as he was then at the point of avoiding food as he just got too scared of choking.

    Unfortunately for dad it was all just too little too late and he only had the Rig 3 weeks before passing away this week.

    Please consider it whilst you can recover x

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  • matthew55
    replied
    I am slowly moving away from eating 'normally' to pure PEG days. Eating is a trial that I am happy not to have to attend. x

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  • Ellie
    replied
    Thanks for sharing that, Dingaling.

    Love Ellie.

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  • dingaling
    replied
    Hi all,

    I just wanted to give my perspective - might help?. My husband has been diagnosed 5 years. He was adamant he did not want a PEG and had this documented in his ADRT.

    He could still eat and drink and take medication orally, but eating was tiring and therefore not always enjoyable and choking become more frequent and distressing. Medication whether tablet or liquid form was becoming difficult too.

    I respected his decision on whether to have/refuse a PEG or any other treatment for that matter, but I just wanted to make sure he had all the facts and made an informed decision - so managed to persuade him to go along to an appointment with our respiratory consultant and MND team. I was also conscious there is a window of opportunity the have a PEG and didn't want him to change his mind and it be too late.

    anyway he decided based on pros and cons he would have it done. That was in 5 months ago now, he says himself the actual PEG insertion was easy, took 20 minutes - it was the workup that took the time (i.e. checking his breathing was okay to have the tube inserted).

    It has taken some getting used to and he still eats and drinks orally, but we view the PEG as a back up plan, it has massively helped with fluid intake, which has helped with other things like constipation, hydration etc and he is in charge and can decide when he wants to use it or not.

    Know everyone is different and has the right to choose based on their own wishes, but for him and us it was worthwhile doing.

    Hope that helps

    Dx

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  • Graham
    replied
    Hey ho... Maybe a PEG isn't required. Get a gene test.

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  • denise
    replied
    i think stephen might be coming around to the idea of the peg but we will have to see how it goes with the doctor. i think if it suddenly appeared in place over night then he might be ok with it but i think its the whole idea of having it done. when you think how many of us put of going to the dentist never mind this. i read what matthew had to say about his lamb casserole and putting it down the tube - well that was certainly different. i suppose what nancy had to say about the opportunity for infection when the food goes in the wrong direction is worth thinking about.
    slight change of subject but during christmas my family suggested a wheel chair and at the time i thought oh my goodness imagine putting that infront of stephen. how will he feel when he realises this might be the next thing. now he is having giddy moments and already 2 nasty falls. my daughter has got him some walking poles to help with his balance. how long before we need to get a wheelchair and then what's next? he looked at the mnd paperwork yesterday, as i wanted him to get involved with what he needs to think of next, and he just said 'i am just going to get worse' hell it really broke my heart.
    matthew i would like to ask, if you don't mind, but what have you decided as your final step? sorry if you don't want to answer its ok.
    love to everyone
    xxxxx

    Leave a comment:


  • Coxl3
    replied
    Hi Tess ! I’m 3 years with ALS , the peg has been mentioned to me also . At 40 years old I simply cannot move to that next step either x I totally understand your partners feelings on it as it’s a radical and very poignant stage of progression of the disease . I know some day I’ll accept it but for now no .

    Leave a comment:


  • Ellie
    replied
    Welcome to the forum Nancy.

    I'm sorry to hear of your mum's death - heartfelt condolences to you.

    Thank you for posting.

    Take care.

    Love Ellie.

    Leave a comment:


  • nancy
    replied
    Hi all, my mum was offered a peg when she was diagnosed with mild swallowing difficulties but she refused, anyway she tried to take her medication which went into her lungs causing aspiration pneumonia, she died 10 days later. I would advise anybody with swallowing difficulties to have a peg fitted. i'm still grieving her loss and i wished she'd had one fitted but she wouldn't, she was always hoping the diagnosis was wrong, anyway i hope this helps some people.

    Leave a comment:


  • matthew55
    replied
    I can seriously say that have made provision for a personal decision to end my journey before the actual end. That done I have been a lot happier since. x

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  • Ellie
    replied
    Some folk would rather not prolong their lives - maybe they're older, have other stuff going on, have ethical objections, don't want any interventions, are afraid etc. Ours is not to reason why but to acknowledge free choice...

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  • matthew55
    replied
    Seriously I don't get people's objects for. PEG. I was sedated and I don't remember anything from the op. 9 days in and I can sleep comfortably on my stomach. I use a syringe as it is soooo easy.

    Leave a comment:


  • Tess
    replied
    It is so difficult to know the right timing with any of this and I completely understand his point of not wanting to do things until he really has to. It's horrible looking ahead sometimes and I do feel that when a procedure or new piece of equipment is involved or introduced it is definitely a next step in the process and takes the mind alot to get used to.
    Any time the OT hands us some sort of new gadget, shower chair or bed equipment I have to gulp as it's scary that it's a next step in a direction that no one wants to go.
    But similar to you I try to explain to my partner that its for his comfort and convenience to make things as 'smooth', pain free and hassle free as possible.
    I think you're right to get as much information as possible from the Dr before proceeding and definitely the pros and cons will build a better case in both of your minds at least.

    Tess x

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  • denise
    replied
    hi everyone
    after hospital appointments had been cancelled we had a phone call from my husbands doctor and he suggested that he have a peg fitted. i wasnt sure to be honest. i had looked on here at what was being said by everyone and decided yes he should have it done. the date for the appointment was set by the hospital. my husband should have had it done today but yesterday he refused point blank that he was not having it done he can still eat and when he cant eat he will die. i feel the doctor should have explained to us face to face the pros and cons and i wish i hadnt had to make the choice on my own in the first place. at the time when i said yes it was because i was worried that newly made appointments might well be cancelled again. i just hope he has made the right choice. this is not easy. i tried to explain that its better now before his weight drops too much. that the extra nutrition might well stop him feeling so tired. but no, he wasn't going to have a tube fitted and that was it. we have another appointment with the doctor soon and i am going to make sure we discuss these things properly.
    denise

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  • matthew55
    replied
    I have been living with it since January this year and I am on my 6th day with a PEG. I can still eat and drink almost normally but, my god, what a change for the good it has been? Breakfast is sorted! x

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