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Choking and forward planning

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    Choking and forward planning

    Hi all, any advice or comments will be gratefully received on the following:

    I had my worst ever choking event today when drinking tea. It was very scary. Thankfully Steve was here with me. He suggested that in future I take little sips instead of big gulps.


    I'm still eating ok dependent on my dodgy fingers so the inevitable slowness and often cold food.

    Is it the time to forward plan and explore having a feeding tube before it becomes necessary? Or, should I wait?

    Thanks, Lynne xx



    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

    #2
    Feeding tube all day long. I have given up trying to eat and am close to not trying to drink. Get the tube BEFORE you need it. x
    ​​​​

    Comment


      #3
      Sorry you had such a scary experience Lynne.

      Originally posted by Lynne K View Post
      Steve ... suggested that in future I take little sips instead of big gulps.
      For once he's correct 🤣🤣 You may need to focus on what you're doing now every time you drink - tuck your chin into your chin when swallowing liquids and drink like the Queen, not like a builder 😁

      You should have a swallow assessment by your SLT, but I don't know if your Clinic is back doing these? The SLT can give you tips on drinking & eating as well as telling you if your swallow is affected, that will allow you make an informed decision on a feeding tube.

      As to the when to get a tube, well there is no definitive answer - many of us get it 'too early', others get it 'too late' and have a much tougher and longer recovery.

      The usual advice is to do it sooner rather than later and have an easier recovery - the fitter and healthier we are for the procedure, the better. But of course... who on earth feels they need a feeding tube when they're relatively fit and healthy!!!

      Matthew is a good advertisement for early intervention but we're all different and in different situations. Your progression seems slow and steady and you've spinal (limb) onset, not bulbar, important factors to consider (with your Neuro & SLT)

      In the meantime, take good care.

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Hi Lynne,

        choking is a scary experience as you have witnessed but you can learn to minimise and manage it. I choke often and it is apparent that liquid is worse than solids for me. I have tried several brands of thickeners which help but I always find the drink is affected by the flavour even though the manufacturers say tasteless. Drinking through a straw helps if you have enough suck.

        when we choke our breathing is compromised and we panic which makes things worse. Try to take a breath through your nose. I know it’s not easy but it will come with practice.

        love Barry
        I’m going to do this even if it kills me!

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          #5
          You should have seen the nurses at my covoid test. I was choking and they were convinced I was dying! 😊

          Comment


            #6
            Thank you Mathew, Ellie and Barry.

            My Speech Therapy nurse about 8 months ago and gave me thickeners to try. I couldn’t get on with them. I bawked.

            I'll email her with my query,

            Love Lynne xx
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
            I'm staying positive and taking each day as it comes.

            Comment


              #7
              I didn't like those thickners either - much prefer sipping my coffee through a straw
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                I use a thickening but just one scoop and find it better in hot drinks. I use a beaker and cold drinks can get congealed and stuff up my spout 😊😂

                Comment


                  #9
                  Hi Lynne,

                  Yes choking is scary and thats where my MND all started, I hated the thicker but in the end had to give in to it because I love a cup of tea but it still takes me about 15 minutes to drink one cup in very small sips. I find concentrating very hard on drinking the best way to handle it, don’t be looking at a laptop or TV or trying to communicate with someone at the same time. I almost shut down in my own space to manage a drink. I would say definitely have a Tube fitted so you're ready, I can’t eat at all now and only 1 year ago was still eating quite normally, as they say every one progresses differently. I had my RIG fitted just before lockdown, so glad I did as it would have been very difficult to get it during that period, we could easily have another escalation of Covid so I’d book it in asap

                  Regards David R

                  Comment


                    #10
                    Hi Lynne,

                    Husband has only been diagnosed 4 weeks, affecting his hands and balance. OT suggested a travel mug, got a tall silver one at Home Bargains for 1.50. It keeps the tea hot and because the hole is small in the lid (which screws on, so I need to do it), controls the rate of liquid. It may help, he is a fan now so I bought another for cold drinks. Mugs and cups are a little short and he has to dip his head to drink out of them.

                    Donna

                    Comment


                      #11
                      For David and Dee:

                      Thanks David, I’m grateful for all comments and suggestions.

                      Dee, we already have the kind of cups/mugs that you were referring to. These are from when we regularly hill walked and did camping. I used to take the tops off because they kept the tea boiling hot and would burn my mouth. I wasn’t having much milk then and have non now, so there’s nothing in the tea to cool it down. But I could cool it down first with the top off, then put the top on to keep it just right. I’ll speak with my husband about this. Many thanks, Lynne x
                      Last edited by Lynne K; 21 August 2020, 11:12.
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                      I'm staying positive and taking each day as it comes.

                      Comment


                        #12
                        I chocked on Tea and water but only when im tired or somethings makes me laugh. So everyone knows now in my house so they respect me when im drinking.

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