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    MND and COVID symptoms

    Hello everyone,
    My lovely mum (71 years old) was diagnosed with MND when she was admitted to hospital in Feb​​​​​​ruary. Having had various tests and now a PEG tube fitted, the process has started to discharge her home. Her symptoms have been progressing over the last year but went undiagnosed. She is now bed bound, has no use of her right arm (though has feeling in it), breathlessness and is losing her voice. Thankfully her cognitive function remains and she is still sharp as a pin. Heartbreakingly, symptoms are progressing rapidly and she has been given months to live. Mum has now contracted Covid (positive test two days ago) and remains in hospital in isolation. I am not allowed to visit her because she’s got Covid. Her symptoms so far are a cough which is leading to choking episodes. She says that when she presses her call bell, it takes ages before someone comes to her, I am terrified the symptoms will progress and become much worse. Mum is vaccinated and has had her booster but I’m so scared she will have a choking episode and die. This is an horrific and cruel disease and I hate seeing her suffer but adding Covid to the mix is petrifying and I can’t even be there to comfort her. Does anyone have any positive stories of having MND in the advanced stage and getting through Covid please?

    #2
    A warm welcome to the forum Mymothersdaughter

    I am so sorry to hear of your poor mum’s woes, all exacerbated by the fact that you cannot visit her at the exact period when you most want to.

    First off, do you know how she’s being treated for Covid? Meds used could be sotrovimab (Xevudy) or molnupiravir (Lagevrio)

    Breathlessness: was this present pre-Covid and, if it was, does she use NIV (BiPAP breathing support)?
    Do you know if she is being treated with oxygen?

    The coughing fits leading to her choking episodes: do you know is that because she is coughing up secretions which are then going down the wrong way, saliva in her mouth, just cannot catch her breath or perhaps a throat spasm?

    You could contact the PALS department in the hospital and explain your mum’s fears. (Patient Liaison)

    I don’t want to overwhelm you with more questions…

    Sending you both best wishes.

    Love Ellie xx





    ​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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      #3
      So sorry to hear about your Mum. You were asking about covid. Before the vaccines came out our ventilation unit said they got a few MND patients through it, so I hope all goes well xx

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        #4
        Sending love and my thoughts are with you and your family.

        💗😘🤗😘💕
        when i can think of something profound i will update this.

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          #5
          Mymothersdaughter Sorry to hear about your mum's situation....can't imagine the distress you're feeling.
          I know most people with MND were sent information about treatment with anti viral medication for covid.
          Hope you're mum is getting the right treatment💙🙏😘
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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            #6
            Mymothersdaughter that’s so hard for your mum to get Covid on top of everything else, especially as this is preventing you visit. Hopefully treatment will have been started as soon as Covid was identified, and treatment so much improved now. But very hard when you believe she has only got months to live anyway. Sending you and your mum much love and best wishes xx
            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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              #7
              Hello everyone. I just wanted to say thank you for your replies. They really buoyed me up. Miraculously mum had a cough as a symptom of Covid but nothing else. I cannot put in to words what a huge relief this is. I was able to visit her in hospital yesterday for the first time in three weeks. It was wonderful to see her. Fingers crossed she is being discharged next week and will be back home. Sending you all warm wishes xx

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                #8
                Mymothersdaughter - glad to hear your mum is such a fighter and will hopefully be home very soon xx
                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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                  #9
                  TinyLady Thank you xx I’ve been reading your posts and hope things get moving for you soon xx

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                    #10
                    Mymothersdaughter - thank you, I am hoping so too. I tend to relax more at the weekend because I can't chase or fight and know that no one will contact me.

                    I hope you and your mum get the support and care that you both need promptly xx
                    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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                      #11
                      Mymothersdaughter Thanks for posting the update and fantastic to know your mum wasn't too poorly.

                      Originally posted by Mymothersdaughter View Post
                      I was able to visit her in hospital yesterday for the first time in three weeks.
                      Woohoo! I'll bet that was an emotional reunion 🤗
                      ​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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