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    Hello from me

    Hi everyone

    My wonderful Mam was diagnosed 2 weeks ago with MND (bulbar). As I know you all understand through experience, this completely floored us. She had a gruff throat, difficult swallowing and was getting breathless. At her outpatient appointment (on my 50th birthday - she owes me a birthday &#128514, the doctor told us, quite bluntly what she thought it was. Mam was then in hospital for almost 3 weeks having LOTS of tests. Anyway she is very positive, even went to see Michael Buble the day after she was discharged from hospital. I think we are wrapping her in cotton wool but it is just the unknown. anyway thanks for reading this post and stay strong everyone.

    #2
    Hi Lesley,

    Welcome to the forum. So sorry that your Mum has been diagnosed with this horrible disease. It can feel like a very lonely time but, if you need information or support, we are here.
    Dina

    Trying to keep positive, but not always managing.

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      #3
      Hi Lesley and welcome to the Forum.

      Sorry to hear of your mum's recent diagnosis.

      I know you want to wrap her up in cotton wool but she obviously has other ideas Good for her going to see Michael Bublé as planned - life is for living...

      Hopefully she has good healthcare support too to give advice on help available for eating/drinking, breathing and communicating.

      Take care.

      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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        #4
        Hello Lesley and a warm welcome to the forum.

        I am sorry for your mums diagnosis... it's such a shock isnt it ? The forum is a good place for emotional and practical advice so do ask if you have any questions.

        I can understand how you want to protect you mum and wrap her in cotton wool. Michael Buble sounds like good therapy too , however and it's good to keep planning treats and outings.

        Take Care of yourself ,
        Love Debbie x

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          #5
          Hi Lesley, very sorry for your mums recent diagnosis. You must all feel overwhelmed at the moment. You have found a good place to find support, information and sign posting to useful things.

          It sounds like your mum has a lovely family. Look after yourselves as well as being there for your mum.

          Michael Buble sounds good. Building happy memories is a lovely thing to do. Lynne x
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
          I'm staying positive and taking each day as it comes.

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            #6
            Hello and welcome Lesley.

            Sorry to hear that your mum has been diagnosed with MND and I understand how you are all in shock since many of us have been through it. Eventually we all see a pathway and try to make the best of life, albeit a different path than what we had planned.

            My family have stayed strong for me and I find this helps to cope with the challenge.

            Best wishes,
            Barry
            I’m going to do this even if it kills me!

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              #7
              Thank you everyone, it means so much. You feel so alone as if your loved one is the only one going through it.

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                #8
                Hi Lesley my mam has the same diagnosis is October,bulbar onset, it’s so hard to get your head round xx

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                  #9
                  Hi Ruby, yes it’s horrendous isn’t it. I’ve now developed lovely insomnia as I have so much going on in my head.

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                    #10
                    Hi Lesley,

                    I know it is very hard to get your head around what's happening to your lovely mum and I also know how everything, and I mean everything, rushes around and around in your mind when in bed...

                    Insomnia isn't good and you need all your energy to get through these early days, so I wonder if listening to a podcast, audiobook or music in bed would distract your mind and relax you enough to nod off? Of course your GP can presribe you something too, if necessary.

                    Take care,

                    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
                      Hi Ellie, thanks for your advice and tips. I’m sure it will be a temporary thing, although had less than an hour last night so feeling and looking delightful:-)

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                        #12
                        My brain works over time at the minute it’s constant, I’ve started running which helps massively with stress I’ve only just come this website it’s good to know your not alone because you feel like the only person in the world this is happening to.

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                          #13
                          Hi Lesleyj, I totally understand what you mean. My dad was diagnosed in Early January. It hit me like a tonne of bricks and come bed time I would just be staring into space thinking about all sorts.
                          I found sleeping piano music helped. Really concentrate on the sound and it helps block thoughts.
                          I did also go to the gp.
                          As I dont want dad worrying about me.
                          I hope you manage to get some rest soon x

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                            #14
                            My m a m had pseudo bulbar palsy, does she still have speech ? Hope you are caring for yourself

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                              #15
                              Hi Streetwise, yes Mam can still talk although her voice is getting worse. I’m ok and now sleeping thank goodness. x

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