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  • Terry
    replied
    Hi PeterW,

    How are you getting on with the robotic feeder and what make is it?

    Best wishes, Terry

    Leave a comment:


  • Gillette
    replied
    Hi Peter and welcome to the forum but sorry that you need to be here.

    It's good to hear that your PEG fitting went well.

    I am waiting for a date for my PEG to be fitted. There is a provisional date if it's to be done at Salford but there is some doubt about where it will happen because of my test results. It could end up being done at Wythenshawe. I have my fingers crossed for Salford. However, whichever hospital it is fitted by, I will be an in-patient from Monday to Friday.

    Leave a comment:


  • Ellie
    replied
    Originally posted by PeterW View Post
    ... I'm experimenting with the spoon-feeder robot. This allows me to eat socially while attracting only mild ridicule, rather than pity!
    Charge your viewing audience for the entertainment - don't miss out on making a few quid for the MND Fund

    Leave a comment:


  • PeterW
    replied
    Originally posted by Ellie View Post
    Hi Peter and a warm welcome to the Forum nobody wants to join...

    Good to hear your feeding tube is in place for if or when you need it. Do you eat any food or just take the sip feeds?

    I use a pump for my feed and have been in various places with the pump quietly feeding me and nobody is any the wiser

    Love Ellie.
    I continue to eat normal foods I can still manage with my weak cough and swallow, but I have nearly useless arms and hands, so I'm experimenting with the spoon-feeder robot. This allows me to eat socially while attracting only mild ridicule, rather than pity!

    Leave a comment:


  • Ellie
    replied
    Hi Peter and a warm welcome to the Forum nobody wants to join...

    Good to hear your feeding tube is in place for if or when you need it. Do you eat any food or just take the sip feeds?

    I use a pump for my feed and have been in various places with the pump quietly feeding me and nobody is any the wiser

    Love Ellie.

    Leave a comment:


  • Lynne K
    replied
    Hi Peter. Welcome Lynne

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  • PeterW
    replied
    Originally posted by Kayleigh View Post
    Hello Peter and welcome to the forum,

    It sounds like the hospital was very thorough with your care, which is good.

    I hope things are going well with using your PEG.

    Best wishes
    Kayleigh
    Thanks. My PEG was a "better too soon than too late" decision. So although it is religiously flushed and rotated, I'm still consuming the feeds through a straw! This isn't a gourmet experience, but it's a lot quicker, and can be done anywhere without drawing attention!

    Leave a comment:


  • Kayleigh
    replied
    Hello Peter and welcome to the forum,

    It sounds like the hospital was very thorough with your care, which is good.

    I hope things are going well with using your PEG.

    Best wishes
    Kayleigh

    Leave a comment:


  • PeterW
    replied
    My PEG took 4 days in hospital to fit. The hospital said they needed a day to ensure my stomach was empty and a couple of days post-op to be sure there had been no "complications" arising from the operation, or issues with subsequent use. The actual op took less than 30 min!

    Leave a comment:


  • Jimbo
    replied
    Thats quick work Martin, I suppose my PEG took longer because the procedure is different and I had previously had a gastric sleeve fitted some years back, which reduced the size of my stomach and made the op a little more complicated

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  • Spiersey
    replied
    Hi Ellie,

    Thanks for your reply, I love the term cushions, I will be adopting that loving term for my own extra carriage

    My husband has lost between 2 - 2.5 stone since diagnosis in December but we put that down to muscle rather than weight if that makes sense?

    He has great difficulty with both manual dexterity and breathing and is now somewhat reliant on his Nippy which he has been using for the last couple of weeks, at first just overnight but now more often than not in the daytime.

    I cant imagine him considering a feeding tube as it just represents yet another thing he cannot do as a result of this poxy disease

    Xx

    Leave a comment:


  • martin
    replied
    I was only in hospital for just over half a day for my RIG.

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  • Kayleigh
    replied
    Hi Dina and Lynne,

    I just happened to see it when I was 'doing some googling'. (It's one of the 'Patient Information Leaflets' that can be downloaded from the Salford Royal website).

    I hope you are having an enjoyable weekend.

    Love Kayleigh xx

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  • Lynne K
    replied
    Thanks for the link Kayleigh. I'm now clued up. Lynne x

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  • Gillette
    replied
    Hi Kayleigh,

    Thank you for the link that you posted for Lynne. I should be having my PEG fitted at Salford (unless there are problems with my breathing) so I'll be reading through it carefully.

    Leave a comment:

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