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Losing arm function and feeding et cetera

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  • nunhead_man
    replied
    Good afternoon Sean,

    I'm afraid we do not have $7000 to drop on something like this.

    I think I may be relying on my partner to feed me while we sort out a gutport

    But we're not there yet – I still need to experiment with palm straps again if I loose some more strength in my hand but do not get too much damage in my shoulder

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  • Shaun
    replied
    Hello Andy reading this got me thinking about my future (als flail limb) and did a bit of digging around , there is also the OBI dining companion looks a bit nicer than the neetereater, and have found cost from US supplier around $7000. There is a uk supplier, https://www.rahanalife.co.uk/dining-companions

    there is also another device called the Bestic on the same page as link above
    no pricing but they do offer trials of the devices
    shaun

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  • matthew55
    replied
    Today I changed the working end of my PEG without any assistance. I have given up trying to eat food and the shock when I realized I was leeking was new. I syringe while I have my hands and it is so simple even I can do it. What is so great about life after all? 😉x

    Leave a comment:


  • nunhead_man
    replied
    Good morning Beamer

    Originally posted by Beemer View Post
    Hi Andy, I am slowly losing the use of both arms................
    Thank you for that suggestion – at the moment I can feed myself using my right hand and hold a normal set of tools although I'm not quite sure how long that's going to continue – hence the planning.

    I did have a strap across my left hand with a little pocket in it which would hold one of a normal set of tools but I got out of using that when I started using my right hand which may suggest why my left shoulder has less movement now than it use to have, aside from the muscle damage.

    One of these - https://www.completecareshop.co.uk/e...SABEgKsTPD_BwE

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  • Beemer
    replied
    Originally posted by nunhead_man View Post
    We have just begun a debate here because I am slowly losing the use of my right arm as well as being down to about 50% of function on my left.

    This will eventually mean that I cannot feed myself.

    I presume I need to be preparing for this sooner rather than later as with having move house et cetera and wonder if I should be on the blower to my new neurologist to ask to get on the list for a stomach feeding tube as being fed by the mouth by my wife on a regular basis may well be quite a chore for her and a pain for me.
    Hi Andy, I am slowly losing the use of both arms, I have to use both arms to lift a spork, it is a combination of a spoon, knife and fork.
    My voice and swallowing are fine at the moment, so I would like to keep it that way.
    I have problems cutting up some foods and drink using a straw, although I also have plastic insulated mug with a lid I call my Tommi Tippy mug, as you can appreciate could get knocked over, whilst trying to lift your arms, you end up dragging stuff off tables

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  • Deb
    replied
    You made me smile with this too Denise.

    We have some dark humour in our house because laughing really helps, even at some situations we never thought we would find ourselves in.

    I sorry that you have some really hard decisions to make.

    Take Care of yourself too,
    love Debbie x

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  • Doug Carpenter
    replied
    Thanks for the chuckle Denise.

    At times, humour, even black humour, helps!

    Doug

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  • denise
    replied
    this might sound terrible but after reading what some of you have to say i said to my husband yesterday that it sounds ok. no more washing up, worrying about what to do for meals. perhaps i could have one too. ok i know i shouldn't joke but i was trying to lighten the situation. at least he laughed.
    love to everyone
    denise

    Leave a comment:


  • Ellie
    replied
    Yes Denise, it can take a while to come to terms with the notion of 'artificial feeding' and nothing worse than feeling forced into making a quick decision, especially if he thinks he doesn't need a tube right now...

    If you need any more insights, fire away.

    Love Ellie.

    Leave a comment:


  • denise
    replied
    hi everyone
    thanks for all your help and advice. we got into this tangle because originally stephen had appointments for his breathing and so on but because of the virus everything was cancelled. the doctor phoned and i had a talk with him because stephens hearing isnt very good and he gets confused on the phone. the doctor asked about a breathing tube and a feeding tube and i agreed it might be a good idea to arrange both but i thought we would have a face to face with the doctor first so it could be explained better. after that i tried to find out as much as i could but that isnt helpful if i dont know what the hospital was planning to do or use. soon we will have an appointment with the doctor and i will be better prepared as to what stephen wants and what they are offering. stephen seems to have come round to the idea a bit more. i can understand that the thought of a tube sticking out can be a bit unnerving but if there are benefits and extra nutrients make him feel a bit better then it would be worth while.
    love to you all - the disease is bad enough but the decision making is quite stressful.
    denise
    xxxxxxxxxx

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  • Ellie
    replied
    Robin, there's a Signature facility which might be useful?

    In your profile, click on Edit Settings, Account, scroll down to Edit Signatures, select it then click on Edit Post Signature where you can type what you want your signature to read and don't forget to click Save & Save Changes at the end of the page.

    Love Ellie.

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  • Guy
    replied
    I must remember to sign off as Robin!

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  • Doug Carpenter
    replied
    Many thanks for those links Guy. Very helpful.

    Doug

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  • nunhead_man
    replied
    Good afternoon,

    Thank you Guy that is a helpful summary

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  • Guy
    replied
    Very succinct summary of the study findings https://old.mndassociation.org/wp-co...mendations.pdf

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