Might seem like a daft question, but how have people adapted to the loss of use of your arms when eating? My left arm has been no use for over a year now, but now my right arm is following it. I've switched to plastic mugs and when eating I rest my arm on a cushion to lift it up off the table. Is the only option to have someone feed you or am I missing anything? I've tried a straw for drinking but that doesn't seem to work very well with bulbar symptoms.
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Each day is made easier with a bit of humour. -
I wish I had an answer my friend. You're a stronger man than me. 👍xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx -
Ann used a Neater Eater arm support. It attaches to a table but can also attach to a power chair or be freestanding, although freestanding requires a lot of room. It works on simple bearings. It allowed Ann to continue feeding herself for close on a year. Our OT arranged a home demo to see which type suited Ann best. They are usually made to measure. The strength of the movement can be simply adjusted as the weakness continues. It cost about £1200 however the MNDA provided a £1k grant
worth having a chat with your OT. Not sure if the NHS can provide one. When Ann finished with hers I gave to our SALT so she could pass it to someone else.Comment
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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.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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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 xxComment
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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.Each day is made easier with a bit of humour.Comment
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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. 👍😁xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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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.Diagnosed 2nd Jan 2020
Both arms/shoulders affected, left worse than right.
Progressive Muscular Atrophy suspectedComment
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Beemer If you don't already use them, try silicone straws - you need only to cut them once and they're much greener too 👍Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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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.Each day is made easier with a bit of humour.Comment
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GaryM I can only use a straight-cut straw, diagonal cuts leave my clothes wet. So funny how solutions can be so individual!Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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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.Originally posted by Beemer View PostEach day is made easier with a bit of humour.Comment
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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.Each day is made easier with a bit of humour.Comment
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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!Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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