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    Can anyone hopefully share some Covid experiences to reassure me please?

    My husband’s MND diagnosis was in January this year, so early days - he’s mobile and his symptoms are not causing too many problems as yet. However, I tested positive for covid on Tuesday and despite our best efforts he tested positive today (he was negative Tuesday, Wednesday and Thursday). I was surprised it wasn’t positive yesterday tbh, he had symptoms … but it wasn’t. He’s quite unwell with it now (I’m not too bad at all) and we’ve been trying all day to get the antivirals that he should be able to access. It’s been a struggle, we reported the result at around 7.30am, NHS email came confirming he was eligible for antivirals and that someone would be in touch within 24 hours. After waiting several hours and seeing him struggle I contacted our MND team who tried to speed things up. To cut a long story short, we got a call from the Covid response team around 3.30 this afternoon - very pleasant clinician took all the details and said a doctor from the covid response team would phone us tomorrow and discuss the antivirals …apparently there was no one on duty “this evening” (it was 3.30) that could do that. Usual advice to call 999 if his breathing was really bad.

    So there’s nothing more I can do for now, other than watch him and make him drinks and try to tempt him to eat something in between coughing fits.

    If anyone has had covid - how long did it take to recover? Did you have antivirals? Any encouraging information welcome.

    Thank you for reading

    L x

    Lyn-E Your anxiety is palpable Lyn, I'm so sorry your hubby will likely have a wait before starting the antivirals.

    I don't suppose they gave you the fingertip oxygen monitor or if it's something which you have at home?

    Does he use NIV?

    I'm sure you'll be on high alert all night... 🤗😘
    ​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 Ellie
      No we’ve nothing like that as yet and yes I’ll certainly be on high alert tonight! I hoped we’d sidestepped covid but no 🙁. I just hope we get an early phone call tomorrow
      L x


        What an awful position to be in. Can you call gp out of hours? I really hope you get assistance.

        Diagnosed May 2021 bulbar onset als.


          Hi Lyn,

          Yes I had Covid at Easter.

          It would appear that it seems to be a common thing now for symptoms to be around for two or three days before people are testing positive, this is making accidental transmission much easier. My wife had some mild symptoms for three days before testing positive and by then it was too late for me.

          My symptoms were mainly coughing and some breathlessness and along with that I generally felt quite yucky and tired. I received an email to tell me that I should have anti-viral treatment and that somebody from the NHS would contact me within 24 hours, if they didn’t contact me I was to call 111.

          I ended up calling them.

          We drove to Chesterfield on Easter Sunday and I had an anti-viral intravenous infusion which took about 30 minutes to administer, I could not have the anti-viral treatment in tablet form as it clashed with some of my existing medications.

          Within 24 hours of having the treatment my symptoms improved and I began to feel a lot better, this was day 5 after testing positive. The NHS supplied me with a blood oxygen meter which I had to record along with my pulse twice a day and the Nhs contacted me to check on my progress. I did not experience any oxygen level problems during the illness.

          I would say my symptoms had pretty much disappeared after a week or so with the exception of a niggly cough and bringing up some phlegm. I also felt a bit breathy for a few days as well.

          Good luck, James

          Foxes Never Quit 💙


            Hi Lyn, I'm sorry to hear you and your husband have COVID. My dad tested positive mid-March. He's bulbar onset (PEG but not yet using NIV). He copied far better than I expected, he didn't have too many symptoms and his breathing was OK.he was even out gardening (he's still pretty mobile).

            He was monitored on a virtual COVID ward which the GP can refer your husband to (I think our speech therapist made the referral so that may be another option). They can provide a finger oximeter to you and you report oxygen levels twice a day. I'd already brought one for dad so he used that.

            Dad didn't have the antivirals, wasn't able to take the tablets (apparently they are quite large and didn't seem to be an option for PEG) and they didn't do the IV antivirals as his oxygen levels were good. I understand they can be given within the first 5 days.

            Dad unfortunately suffered from mucus plugs that he was unable to cough up and has been suffering ever since with thick mucus issues that nothing seems to be helping with. Dad tested negative somewhere around day 8.

            I hope you and your husband aren't too bad and recover quickly but understand its worrying.


              My partner is reliant on his NIV now 24/7 and has no diaphragm muscles so when we both got covid last month I was beside myself with worry for him.
              We did not have the antiviral, we are both triple jabs. I was really poorly but I don’t know how but he only had mild symptoms and the symptoms lasted for about a week with him but about 3 weeks for me.
              Fingers crossed he will be ok and you both recover soon xx


                Thank you everyone for your replies- it’s really comforting to hear of recoveries!
                He’s anxious about lying down because of the gunk gathering in his mouth which he constantly needs to expel - so I think it’s a long night in front of the TV for us.
                Fortunately I just had one day on Wednesday when I felt really rough but now I feel ok - apart from a few coughing spasms - so at least I’m well enough to look after him.
                It’s just that the email we all got from the NHS about the antivirals made it sound so easy to access but it’s been anything but easy to be honest and we’re not there yet…when will the doctor call? will we get the antivirals quickly? aargh!! It’s been hard enough coping with the MND diagnosis…definitely didn’t need this! (Sorry, just letting off a bit of the steam).

                Anyway, thank you all again - it really is comforting to hear from you all - such a special community
                L x


                  So sorry to read this Lyn-E. My cough is extremely weak now and Covid is my worst nightmare. Thank you for posting, it’s been very useful to read others’ experiences. Best wishes for speedy recoveries.
                  Diagnosed October 2020 - See my blog at


                    Hello again, thought I’d post a quick update.

                    We eventually had a phone call from the covid response doctor at around 11 o’clock on Saturday morning. He was brilliant. At first it looked like we would have travel to Manchester Royal for an infusion but the doctor spoke to a pharmacist about interactions of other medication my husband takes and it was decided that if he stopped his statin for 8 days, he could have the oral drugs. They couriered the drugs to us and we had them by 2.30. Result! Two doses of 3 tablets, twice a day for 5 days.

                    We also were sent an oximeter.

                    The first reading I took on Saturday was 95…the written instructions from hospital said that reading was ok. If it fell to 93-94 we had to ring for advice (no number given though!) and if it was 92 or less…dial 999.

                    So on Sunday morning the reading was 90! However, he wasn’t struggling to breathe, he was alert and he said he felt better than the day before (2 doses taken at this stage) but try as I may, I couldn’t get a better reading. As a guide to check if the oximeter was working properly, I checked my own reading, it was 98. So I rang 999.

                    The ambulance came within 3 hours and the crew were wonderful. They used two oximeters, one on each hand… their readings were 96 and 98. Ours continued to read lower at 92. So they were able to completely reassure us that there wasn’t a problem and they thoroughly checked him out ie BP, temperature etc.

                    He’s nowhere near recovered yet of course, but definitely seems to be moving in the right direction. I just need to encourage him to try to eat a bit more now.

                    L x


                      Lyn-E Thanks so much for taking the time to post the update 👍👍

                      Hopefully he'll feel heaps better this time next week 🤞🤞

                      Don't forget to look after yourself too 🤗😘
                      ​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


                        Lyn-E I’m so sorry you are both going through this! You must be exhausted! I hope you both have a speedy recovery ❤️‍🩹



                          So glad the ambulance service could help you out. All my interactions with the the amulance service have been brilliant.

                          How are you both today.

                          Both my elderly parents had covid in January. Mum has a respiratory condition which means she has extremely poor lung function and is prone to getting chest infections. She felt poorly for 5 days at home. But is recovered well apart from tiredness.


                          Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


                            Lyn-E thank you for such an informative update. As someone yet to catch Covid, I am keen to be well informed should I need to know what to do.

                            Glad the Ambulance service were so supportive. It's scary when you are not sure what to do and you hate to make a fuss, but you did the right thing and glad all was OK xx
                            Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                            Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!