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Losing use of arms

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  • GaryM
    replied
    My wife (who shall henceforth be known as Louise) even suggested a baby's bottle. In fact, we've both remarked how this illness turns you into a very intelligent baby.

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  • Ellie
    replied
    Originally posted by slp View Post
    I can't use a straw with a no return valve at all.
    I used to be able to use then, when my muscle strength wasn't as miserable as it is now 😏

    Yes, we are all unique!!

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  • slp
    replied
    Yes Gary the straws are cut at the bottom x isn't it funny how different things work for different people. I can't use a straw with a no return valve at all. I have my drinks on a box or books on the kitchen table with a straw. If I am really thirsty I will have ice cold water and no straw but I need help with that obviously x

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  • Ellie
    replied
    A diagonal cut would increase the overall aperture, thereby increasing the amount of liquid delivered by the straw?? I need to have as little liquid in my mouth to avoid splutters, coughs and leaks!

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  • GaryM
    replied
    Originally posted by Ellie View Post
    GaryM I can only use a straight-cut straw, diagonal cuts leave my clothes wet. So funny how solutions can be so individual!
    I assumed that the diagonal cut went at the bottom. I'm curious now as to what purpose it serves. I thought it was to reduce resistance to flow.

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  • GaryM
    replied
    Originally posted by Beemer View Post
    Hi Gary, my arms were first affected, but much slower than yours. My left arm almost useless, right arm not much better.
    I struggle to feed myself, I pick things up by resting my wrists on the table edge, grasp the (plastic) mug with both hands, keeping my hands (and mug) close to my chest I lift my chest until I can get my elbows on the table. The mug is about mouth height at this point, and by leaning back the contents can be controlled into your mouth. hands are getting weaker now though so I will need alternative eating methods sometime.
    That said, the easier method is with straws (for me) as I do not have eating/drinking issues yet.
    I will try the shorter straw method that Sarah mentioned though, as I tend to catch the longer straw with my floppy arms, and spill drinks.
    When I say my left arm is useless, I mean it doesn't move at all. One thing I have noticed though is that sometimes if the mug feels too heavy in my right arm, if I wait a minute or so it seems to regain enough strength to lift it.

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  • Ellie
    replied
    GaryM I can only use a straight-cut straw, diagonal cuts leave my clothes wet. So funny how solutions can be so individual!

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  • GaryM
    replied
    Well, I tried the straw with one end cut at an angle and shortened and discovered that I can't suck anymore. I ended up with more saliva in the mug than tea in my mouth (ugh!). Thanks for the ideas though, one can but try these things.

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  • Ellie
    replied
    Beemer If you don't already use them, try silicone straws - you need only to cut them once and they're much greener too πŸ‘

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  • Beemer
    replied
    Hi Gary, my arms were first affected, but much slower than yours. My left arm almost useless, right arm not much better.
    I struggle to feed myself, I pick things up by resting my wrists on the table edge, grasp the (plastic) mug with both hands, keeping my hands (and mug) close to my chest I lift my chest until I can get my elbows on the table. The mug is about mouth height at this point, and by leaning back the contents can be controlled into your mouth. hands are getting weaker now though so I will need alternative eating methods sometime.
    That said, the easier method is with straws (for me) as I do not have eating/drinking issues yet.
    I will try the shorter straw method that Sarah mentioned though, as I tend to catch the longer straw with my floppy arms, and spill drinks.

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  • matthew55
    replied
    Hi Gary, I gave up trying to eat a while ago and I miss eating more than anything else in the world. But it is true that if you put a little butterscotch syrup in an ensure you will be burping butterscotch for a good time after. πŸ‘πŸ˜x

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  • GaryM
    replied
    Thanks Phil, Ellie and Sarah for the ideas. I have looked at the Neater Eater before my arm started to weaken. I'll have another look. My left arm took about six months to become useless so I've probably only got a few more months. I'll try the straw ideas. I've seen the valved straws, but thought my wife would spend more time cleaning them than if she just held the cup. Maybe it's time to start making use of the PEG. I might start another thread on that.

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  • slp
    replied
    Hi Gary

    I used a neater eater for quite a while x it was on loan. I am tube fed now but still drink with a straw try cutting the bottom of the straw at an angle it makes it far easier to drink

    stay safe x Sarah xx

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  • Bowler
    replied
    https://neater.co.uk/neater-eater/

    Sorry Gary don’t know how to do links but this is the website

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  • Ellie
    replied
    GaryM There is the Neater Eater robotic feeder, at a price or, if you're very lucky, one will be loaned to you.

    I am fed, my arms have zero movement or function.

    I wonder if you put the cup on the table and bent your head to meet the straw, rather than bringing the straw up to your mouth would be better for you? I find cutting the straw shorter helps - less effort needed! There are also straws with one-way valves.

    Love Ellie.

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