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    Glass Straws

    These days I literally can’t hold my drink. I don’t have the strength to lift the glass! So, like many of you I drink through a straw. I have some reusable plastic ones and lots of paper ones. They’re ok but recently a friend bought me a box of glass straws (Aldi). Absolute game changer. So much nicer having a cold beer with the feel of glass rather than paper. Doesn’t sound like much but there you go, definitely recommend them.

    #2
    Great tip Tony, thanks x
    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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      #3
      I was contemplating straws for Stephen as hes forever dribbling and I'm forever wiping. Thing is he seems to be having trouble sucking. I was thinking its because he has only got his bottom teeth but I'm pretty sure it's to do with lack of suck. His roll ups are forever going out because they seem to have gone soggy before hes made an effort to suck. Anyone else have this problem?

      George has just been sick on the rug 😳
      when i can think of something profound i will update this.

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        #4
        Having imagined a glass straw must be good for beer, I can't suck either denise
        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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          #5
          Great tip Tony. As a real ale drinker I will definitely try a glass straw.

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            #6
            Heather R so I'm not imagining it. Need a plan b! Anyone got some ideas?
            when i can think of something profound i will update this.

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              #7
              😬 If I were to use a glass straw and have one of my frequent jaw clenches, suffice to say things would get messy 😏

              ​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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                #8
                I remember being really young, probably about 4, my little friend couldn't be trusted with a glass she would bite it. I tried it and got a right telling off. 😐
                when i can think of something profound i will update this.

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                  #9
                  I use metal straws that I bought from Amazon. They are extra long too which is handy. Not thought about a glass straw... I'd be worried I might break it maybe?

                  denise - don't try using a straw to clean up sick... doesn't work 🤣
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                    #10
                    Originally posted by denise View Post
                    I was contemplating straws for Stephen as hes forever dribbling and I'm forever wiping. Thing is he seems to be having trouble sucking. I was thinking its because he has only got his bottom teeth but I'm pretty sure it's to do with lack of suck. His roll ups are forever going out because they seem to have gone soggy before hes made an effort to suck. Anyone else have this problem?

                    George has just been sick on the rug 😳
                    Yep I have the same problems. I can’t use straws and have trouble lighting my cigarettes too. I assume it’s due to weak diaphragm muscles related to bulbar onset MND.

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                      #11
                      Originally posted by TinyLady View Post
                      I use metal straws that I bought from Amazon. They are extra long too which is handy. Not thought about a glass straw... I'd be worried I might break it maybe?

                      denise - don't try using a straw to clean up sick... doesn't work 🤣
                      I have some metal straws as well they’re quite good but I prefer the glass ones. They’re quite thick so not at risk of breaking.

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                        #12
                        Originally posted by Tony View Post
                        I prefer the glass ones. They’re quite thick so not at risk of breaking.
                        All jokes aside folks: if, like me, you're prone to jaw spasms, clamping teeth down on a glass straw and being unable to stop the jaw from clenching the glass, stick to safer options 🚑 👩‍🔬
                        ​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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                          #13
                          We went through using straws and did have some glass ones, then some longer narrower metal ones that could be "clipped" to the top of the glass or cup.

                          Unfortunately no longer suitable but worked well for a while. Now have long spouted soppy cups for very limited thickened coffee.

                          Interestingly we now also have the jaw clamping usually when I am cleaning his teeth so have stopped using the electric toothbrush which seems very brittle and I worry about it shattering so back to a manual brush which gets clamped between his teeth.
                          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                          Respiratory and blood gases still within normal range.

                          No speech but sense of humour still fully intact.

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