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    One of my concerns is that lately I choke on water etc and can’t breathe in properly for several breaths, scares the hell out of me.
    my throat is very sensitive and touchy at these times.
    Is this common and any hints how to best deal with it?
    I’ve tried sucking lollies to avoid it, but when it happens-usually drinking water- it’s sudden and scary

    I did that a few times - time for a feeding tube


      Bite the bullet and get a PEG, a small sponge is also handy. 👍😁x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


        Hi Peter,

        This symptom is quite common with bulbar type MND. Thin liquids are more difficult to swallow without choking and they often recommended adding thickeners. I know how scary it is when you can’t take a breath as it occurs regularly with me. Try to breathe through your nose and above all, avoid others trying to help because you and they need to stay calm. It often takes several hours for your swallow to return to “normal” and during this time avoid dry foods.

        As Matthew says a feeding tube will eliminate this problem but not all of us wish to go down that route.
        I’m going to do this even if it kills me!


          I appreciate your view but if I didn't have it I would starve to death. I can think of better ways to check out. 😁x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


            Dear Peter,

            I am sorry to hear you have been experiencing choking episodes when swallowing water. This sensation can indeed be a very frightening event.

            Have you been referred to a speech therapist for a swallowing assessment? If the muscles in the throat and the tongue start to weaken it can be quite difficult for the tongue to push water to the back of the throat and with weakened throat muscles once it is there it can be difficult to swallow.

            When this starts to happen, you may be advised to start thickening your drinks. Water is especially troublesome to swallow because it is a very thin liquid.

            You may be aspirating a little of the water down into your airways which may account for you struggling to catch your breathe or it could be because your muscles are tensing and you become very anxious.

            The speech therapist will be able to assess your ability to swallow and advise on thickeners for your drinks and techniques to aid your swallowing.
            If you have not yet been referred to a speech therapist this can be carried out either by your GP or Neurologist.

            You may also be advised to eat foods which are easier to swallow, a dietician would be able to discuss with you foods you can eat and those to avoid.
            The MND Association can provide you with an Eating and Drinking Guide, this guide discusses swallowing difficulties and also contains recipes using foods which are easier to swallow. If you would like a copy please email either us at [email protected] or call our helpline on freephone 0808 802 6262 and we will be able to organise for a guide to be posted to you.

            You may be advised to have a feeding tube fitted, this will not immediately mean you cannot eat your food in the normal way, but it will mean that it will be there in situ, if needed as the condition progresses, and will also help to supplement your nutritional intake.

            If you have any further questions please do not hesitate to contact us.
            With kind regards
            Jacqui Anderson
            Senior MND Connect Adviser
            MND Connect
            Contact us on 0808 802 6262 or at [email protected]


              Have a read of this, Peter, it helps to explain what's happening to your swallow:

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


                Hi Peter. Using thickener is the way to go. Made a huge difference to me. One scoop mixed in with tea, coffee and water is all it needs. In the UK it's normally supplied on prescription by the speech and language therapist, but it might be available from the pharmacy. As a temporary measure to get fluid in, try milkshakes or soup. I found that wine was the worst, always ended in a coughing fit. So I stopped drinking it.
                Each day is made easier with a bit of humour.


                  Thanks for the good advice and support by all!


                    Peter, it happens to me every now and again. It is really scary. I can’t tolerate thickeners, nor do I like milkshakes. I’m intolerant to dairy also so any milk products are out of question. I see that you’ve had smashing advice already. Good luck with a solution, Lynne
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.