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My Day in Breathing Centre Ward

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    My Day in Breathing Centre Ward

    On Tuesday I had a day case appointment with the Wythenshaw Specialist Breathing Centre. One of the nurses that I saw described my appointment to be like an MOT. I saw a dietitian, Physio and others.

    My blood gases were normal; my walking (with a four wheeled walker) was declared safe by the physio and the Dietitian was happy with my weight. In the threè years since diagnosis I’ve increased from 64kg to 81kg. (I got to this weight by having a carefree attitude to what I eat which was the opposite to my lifelong pre MND care about my calorie and fat intake).

    I was given a cough assistance machine and we (my husband and I) were shown how to use it. But I haven’t been using it because I haven’t had any problems with phlegm recently since me drinking pineapple every day.

    The team are going to refer me to a dietitian for future advice etc They were a lovely group of people. Lynne
    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.

    #2
    That's so reassuring Lynne to have an "MOT " . I'm so glad everything was OK for you.

    It sounds like the MND clinic i go to. I see physio, dietician, OT , respiratory consultant, MND nurse, neurologist and wheelchair clinic in one visit. Its exhausting but worth it.

    Due to Covid I haven't been since January although they would arrange an appointment in an emergency and they do see newly diagnosed people. I've had zoom calls but ( and I never thought I'd say this ) I do miss it. Like yours, they are lovely people

    Take care ,
    Love Debbie x

    Comment


      #3
      Yea Debbie, I met 3 of the breathing team, including the specialist (a female who’s name I forget), the head breathing interventions nurse and another specialist nurse at my last face to face clinic appointment. I’d asked my neurologist about breathing interventions so she referred me to the team and arranged for me to meet them in my usual clinic space in Salford. They answered my questions and said that they’d make me an appointment for a full day and maybe overnight at their unit in Wythenshaw.

      I’ve had online meetings with my neurologist too but the system that she had to use was hopeless. We couldn’t hear one another whilst the video picture of us was on so she had to turn it off as that improved the sound. The NHS is sadly not the best technological.

      Lynne x
      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


        #4
        Hi Lynne,

        I’m pleased you had a perfect review and your care team are obviously well organised. I wouldn’t concern yourself with the weight gain as I find my weight has increased due to lack of mobility and my love of food. Many of our friends have the opposite problem with weight loss and I hate this disease for that. I am using my exercise bike to try to maintain a balance but some days it seems like an effort.

        I agree that the system used by the NHS for online communication is rubbish but I understand they are gradually coming round to adopting more user friendly systems like zoom.

        Love Barry x
        I’m going to do this even if it kills me!

        Comment


          #5
          I too go to Wythenshawe but had not been seen since January, so a nurse came out to see me on Wednesday, she said everything was fine but wants me to be seen day case for a cough assist just in case I need it, but she she also said any future appointments would be at home. Janette x
          Janette x

          Comment


            #6
            I am having a face to face on Wednesday with the Breath people in Salford. I'm hoping I'm good enough to get to the Dental Hospital to have my canines removed. Then I definitely won't be able to pull anymore 😉😃x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

            Comment


              #7
              Thanks Barry, Jeanette and Mathew.

              Jeanette and Mathew, we must be all be fairly near to each other in Greater Manchester going to the same hospitals. But Greater Manchester is so large isn’t it. Wythenshaw must be very busy since it’s the whole North West’s Breathing Centre. Lynne
              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


                #8
                Originally posted by Lynne K View Post
                Thanks Barry, Jeanette and Mathew.

                Jeanette and Mathew, we must be all be fairly near to each other in Greater Manchester going to the same hospitals. But Greater Manchester is so large isn’t it. Wythenshaw must be very busy since it’s the whole North West’s Breathing Centre. Lynne
                Yes I think we must be I’m in Stalybridge Tameside 😊
                Janette x

                Comment


                  #9
                  Me I'm in sunny Leigh 😆x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    #10
                    Oh Lynne, that's great news - hope it has given you a boost - keep up your good work.

                    I, for one, don't miss the hours spent at a clinic appt - yes, it's very beneficial to see lots of different disciplines, but I'm fit for the knacker's yard after it (luckily we don't pass one on the way home or the Mr would leave me there 😃) Home visits and video calls are much more comfortable, one Covid pandemic benefit!

                    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


                      #11
                      Originally posted by Lynne K View Post
                      Thanks Barry, Jeanette and Mathew.

                      Jeanette and Mathew, we must be all be fairly near to each other in Greater Manchester going to the same hospitals. But Greater Manchester is so large isn’t it. Wythenshaw must be very busy since it’s the whole North West’s Breathing Centre. Lynne
                      I'm sure we had this discussion on another thread. I'm under Salford too. I spent first sixty years in Tameside, then moved to Bury two years ago.
                      Each day is made easier with a bit of humour.

                      Comment


                        #12
                        Ellie thanks. It did give me a lift in my feelings.I tried to answer you last night but kept getting an error message. Lynne x
                        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


                          #13
                          GaryM, we were in Bury until moved into this adapted flat in Radcliffe nearly two years ago. Lynne x
                          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


                            #14
                            Well today I had good news for a change in that my breathing is still normal. 😃👍x
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              Oh, that's Fab-u-lous Dahling 🥳🥳
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              Comment

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