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    #16
    Yes we do thanks and use it regularly. Definitely one of the more useful items.

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      #17
      On the topic of suction machines, how often does anyone change all the tubing? I have been doing it every time the bag is full so I change everything at the same time but that can be quite frequently as the bag gets filled up with water when I clean the machine. Not sure if I should be doing it more or less and SLT just said ‘whatever you think’.

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        #18
        I have been using mine non stop it seems for a while and using the same tube. I have a spare but until it breaks or something I won't bother changing it. I have changed the probe cos it looked odd. 😁x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #19
          Hi Debbie

          like you my taste buds have definitely changed and I was always a good eater and ate most things and now struggle to find something to whet my appetite. Again I like crisps and chips and am waiting for my McDonalds to arrive x I do take Riluzole and was told this can affect your taste. my consultant has not come across people with loss of taste !! I feel I eat what I am given and don’t have the desires for my favourites 😫 any more. Such a shame.

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            #20
            I started lose my appetite before I was diagnosed.So before I started taking Riluzole.,I always looked forward to my next meal. But of course I am not rushing around working , walking etc any more. So put it down to that. Hardly ever have a glass of wine anymore.Tastes funny! Taken a liking for M and S trifles. Vanilla slices too. I am suffering from bad headaches most days . Is this a side effect of the drug?

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              #21
              LesleyB When do the headaches come on?
              ​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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                #22
                If it's like mine then NIV may be the answer?😄x
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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