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    New here

    Hi everyone,

    This is my first post. My dad was diagnosed with motor neurone disease in November. It has affected his speech first and his swallowing. We first noticed his speech going around March last year.
    I don't know what to expect next. He already is producing quite a lot of saliva and this is causing drool when he eats. He lives alone so my brother and I are caring for him.
    He is very fit and active still. Far fitter than most people half his age but the swallowing worries me. He is 69.
    hoping this group can offer some support x

    #2
    Welcome to the forum MW6. Ask anything you want, there are lots of friendly helpful people here. Is your dad getting any support from healthcare professionals? Occupational therapist, physiotherapist, dietician should all be involved. You'd probably get the most help at the moment from a Speech and Language therapist. Try and get a referral to one.
    Each day is made easier with a bit of humour.

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      #3
      Welcome, it sounds like he is at the same stage as me. To combat my saliva u am getting radio therapy to reduce the flow. Hang on for at the end of this month I will be able to tell you if it works. In the meantime consider a feeding tube because I have recently given up using my mouth to eat. Stay Strong Matthew x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Thank you. He has a speech therapist and lotsnof medical help. He loves his food so think he will fight to keep going as long as possible

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          #5
          That's precisely what I did 👍😊x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Welcome MW, so sorry to hear of your Dad's diagnosis.

            Just keep an eye on his swallowing and, if he starts coughing after drinking or eating, he should let his SLT know.

            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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              #7
              Hi I’m Steve and sort of hoping I don’t belong here .... if u know what I mean ... over the last 6-7 years maybe more experiencing odd sensations on my face and some confusion , both my calf’s twitch quite badly but only after exercise and for only maybe 15 mins then calm down and stop if I rest them against something. I have pretty bad tinnitus and my hearing is not brilliant .. some swishing noises come and go .. some muscles twitch but not for over 10-15 secs at a time .. these symptoms have come and gone over maybe longer .. is this possibly ALS ? . Sorry if I sound desperate... MS ?

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                #8
                I have also experienced some bladder issues but not sure if I just have a weak one .. I know only a neurologist can diagnose me but at this stage all I get is told it’s stress and get given antidepressants ( mirtazapine)

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                  #9
                  Welcome to our community forum

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                    #10
                    Hi. Spoke to dad on the phone this morning. Sounded very much like he was struggling to swallow. Very worried today

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                      #11
                      Welcome to our community forum

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                        #12
                        MW6 Sorry to hear that. Was youd dad eating or drinking when you were talking to him or just swallowing saliva?

                        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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                          #13
                          Sounded like saliva. I think the eating is getting harder x

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                            #14
                            He is starting to get pains in his legs now. Is this to be expected? Thanks all

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                              #15
                              Every morning I have been forced to get up because of the pain in my legs. This morning I felt a twinge in my arm. We all go through different things but some we share like blood. 🤨😁x
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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