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    Just to add to the mix COVID

    So slowly coming to terms with everything & now I have COVID luckily had both jabs and the irony not lost that we were both discussing the Booster jab appointment's.
    NIV at night is going well. Had another Consultation appointment which again went well ( fully aware this will not always be the case) My main problems at the moment are joint pain ( it bloomin hurts) mobility ( got a stick) I am lucky as I know a lot of you are further down the road but your all an inspiration . ! Just an update keep on keeping on all of you even when our days are a little darker.

    #2
    Sorry to hear about covid
    Derbyram21
    Forum Member
    Derbyram21 how are you managing the symptoms with breathing etc...it's my greatest fear at the moment
    Thanks for the update and get well from covid soonπŸ™
    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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      #3
      Still waiting for my dose of Covoid πŸ˜‰πŸ˜πŸ˜‚πŸ˜Žxx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

      Comment


        #4
        Originally posted by LindaB View Post
        Sorry to hear about covid
        Derbyram21
        Forum Member
        Derbyram21 how are you managing the symptoms with breathing etc...it's my greatest fear at the moment
        Thanks for the update and get well from covid soonπŸ™
        Hi Linda
        Breathing has been ok wheezing but inhaler is helping. Used NiV to help when sleeping but that's the norm really. If you're double jabbed etc it's not as bad. Daughter works at Hospital and has said most coming in are unvaccinated.
        x

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          #5
          Sorry to hear you have Covid
          Derbyram21
          Forum Member
          Derbyram21 Does your wife have it too?

          Originally posted by Derbyram21 View Post
          Breathing has been ok wheezing but inhaler is helping. Used NiV to help when sleeping but that's the norm really.
          No harm in using NIV for a while during the day to give your breathing muscles a helping hand when they most need it. If you have a pulse oximeter monitor, keep an eye on your Sats, especially as you have the added complication of COPD, and I presume your GP knows you've Covid.

          Re your joint pain: You're not going to like what I'm going to say, but... 😏 It might just be the case that, by using a stick, you're changing the dynamics of your gait and putting undue pressure on your joints, causing pain. I suggest being assessed by a Physiotherapist.

          Did your ankle heal fully and did you get an orthotic?

          Wishing you a full Covid recovery.

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

          ​

          Comment


            #6
            Derbyram21
            Forum Member
            Derbyram21 That's tough having covid as well. Hope you soon improve and get on top of the pain issue. x
            Diagnosed July 2020, ALS bulbar onset.

            Comment


              #7
              Originally posted by Ellie View Post
              Sorry to hear you have Covid
              Derbyram21
              Forum Member
              Derbyram21 Does your wife have it too?


              No harm in using NIV for a while during the day to give your breathing muscles a helping hand when they most need it. If you have a pulse oximeter monitor, keep an eye on your Sats, especially as you have the added complication of COPD, and I presume your GP knows you've Covid.

              Re your joint pain: You're not going to like what I'm going to say, but... 😏 It might just be the case that, by using a stick, you're changing the dynamics of your gait and putting undue pressure on your joints, causing pain. I suggest being assessed by a Physiotherapist.

              Did your ankle heal fully and did you get an orthotic?

              Wishing you a full Covid recovery.

              Love Ellie.
              Hi Ellie I have got oximeter which I have been using & and your right about the NIV it's what the MND Nurse said when she found out. I have seen physio who came when I injured my ankle which is now getting better thank you . My joints hurt before the stick to be honest so I am working out what best to take opiates suppress breathing as we know so they are reluctant to prescribe. They are talking about Baclofen as some of it may be muscle related. I've seen Orthotics who have given me foot lifters and some ankle supports with shoes ,when I wear them I walk like iron man πŸ˜ƒ I know I can come on here for advice and support and it's great !!! Thank you all of you ❀️ x

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                #8
                Originally posted by Heather R View Post
                Derbyram21
                Forum Member
                Derbyram21 That's tough having covid as well. Hope you soon improve and get on top of the pain issue. x
                Thank you Heather x

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                  #9
                  Originally posted by Derbyram21 View Post

                  Hi Ellie I have got oximeter which I have been using & and your right about the NIV it's what the MND Nurse said when she found out. I have seen physio who came when I injured my ankle which is now getting better thank you . My joints hurt before the stick to be honest so I am working out what best to take opiates suppress breathing as we know so they are reluctant to prescribe. They are talking about Baclofen as some of it may be muscle related. I've seen Orthotics who have given me foot lifters and some ankle supports with shoes ,when I wear them I walk like iron man πŸ˜ƒ I know I can come on here for advice and support and it's great !!! Thank you all of you ❀️ x
                  P S Wife & Stepdaughter don't have it .
                  My other Daughter had it last year .

                  Comment


                    #10
                    Originally posted by Derbyram21 View Post
                    My joints hurt before the stick to be honest so I am working out what best to take opiates suppress breathing as we know so they are reluctant to prescribe. They are talking about Baclofen as some of it may be muscle related.
                    Hmmm, ask if steroid and/or nerve blocking injections might be suitable for your joint pain. They worked a treat for me, no opioids needed πŸ‘πŸ‘πŸ˜˜
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    ​

                    Comment


                      #11
                      Derbyram21
                      Forum Member
                      Derbyram21 I hope that the covid you’ve got goes away soon and no after effects xx
                      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.

                      Comment


                        #12
                        Originally posted by Ellie View Post

                        Hmmm, ask if steroid and/or nerve blocking injections might be suitable for your joint pain. They worked a treat for me, no opioids needed πŸ‘πŸ‘πŸ˜˜
                        Now there's a thought ! My mum had those !

                        Comment


                          #13
                          Originally posted by Lynne K View Post
                          Derbyram21
                          Forum Member
                          Derbyram21 I hope that the covid you’ve got goes away soon and no after effects xx
                          Thank you ❀️ x

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