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    hello MND world

    I was diagnosed April 2021 with MND/ALS (limb onset) ,although in hindsight I've probably had it for about 18 months now.
    I'm unable to stand unaided and cannot stand straight at all.
    my voice is fading notably and my hands can do nothing requiring strength or dexterity. My arm muscles are weakening and won't allow me to transfer for much longer.
    My intercostal and abdomen muscles have gone,I look 9 months pregnant !
    Just to add insult to injury, my breathing has become laboured in the last 3 weeks and I can't breathe when laying on my back.
    I'm so fatigued with the simplest of tasks.
    that's just my personal rant, don't get me started on council adaptions or surveyors !!!
    enough wingeing... sorry...
    if anyone has kind or constructive words for me I would welcome them today.


    #2
    Chrissly54 hey there and welcome. All I'll say is you're among friends here.
    Rant away and it's not wingeing ....this is a safe place for all that you want to say. Hope you're getting all the support you need.
    Look forward to hearing from you. We do fun stuff too...quiz...book club...jokes....Netflix suggestions. You never know there could be a virtual Christmas 'do'!!! πŸ˜‰

    Take care πŸ€—πŸ˜˜
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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      #3
      Hi Chrissly. No apologies are necessary. As Linda stated this is a safe space to open up. I too hope that you have all of the support you need. If you need to speak with somebody one to one then MND Connect are the people to ring. 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.

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        #4
        Hi and welcome
        It's all funny

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          #5
          A warm welcome and feel free to rant and rave as much as you need. We are here for you. πŸ˜πŸ€—πŸ˜Žβ˜ΊοΈxx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #6
            A warm welcome, feel free to speak your mind, good to get everything of your chest, I have just joined so now how you ferl

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              #7
              A warm welcome to you both Ange and Chrissly. I am a carer for my husband. I frequent this forum everyday don’t write much but grateful for all the support everyone has for each other.

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                #8
                A warm welcome to the forum Chrissly.

                Originally posted by Chrissly54 View Post
                Just to add insult to injury, my breathing has become laboured in the last 3 weeks and I can't breathe when laying on my back.
                I'm so fatigued with the simplest of tasks.
                Has anyone discussed a machine to help you breathe? (It's called NIV or BiPAP)

                It gives you better quality sleep by optimising the respiratory process whilst also reducing the effort on your respiratory muscles. And, by sleeping better, you should also get an energy boost.

                Are you eating well? How do you use a PC or phone if your dexterity is clumsy - with difficulty, I presume? There is help available with assitive technology.

                And, welcome to the Buddha Belly Club πŸ€¦β€β™€οΈπŸ˜‰

                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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                  #9
                  Chrissly54 welcome on board xx

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                    #10
                    Originally posted by Chrissly54 View Post
                    I was diagnosed April 2021 with MND/ALS (limb onset) ,although in hindsight I've probably had it for about 18 months now.
                    I'm unable to stand unaided and cannot stand straight at all.
                    my voice is fading notably and my hands can do nothing requiring strength or dexterity. My arm muscles are weakening and won't allow me to transfer for much longer.
                    My intercostal and abdomen muscles have gone,I look 9 months pregnant !
                    Just to add insult to injury, my breathing has become laboured in the last 3 weeks and I can't breathe when laying on my back.
                    I'm so fatigued with the simplest of tasks.
                    that's just my personal rant, don't get me started on council adaptions or surveyors !!!
                    enough wingeing... sorry...
                    if anyone has kind or constructive words for me I would welcome them today.
                    Hi Chrissly54 and welcome, I joined yesterday or the day before, can't remember now! You sound almost exactly where I am, in fact I was going to ask a question about why my stomach has become so huge! Whinge away, I get tired of trying to be cheerful all the time. Very best wishes x

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                      #11
                      Welcome Chrissy! You learn something new every day on this forum. I’d never realised my β€˜Buddha Belly’ (nice one Ellie!) was mnd’s fault. Everything is mnd’s fault. Blessed thing.

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                        #12
                        Thank you all so much! I love 'Buddha belly' Ellie! I've laughed and cried reading your responses! feeling better now !

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                          #13
                          The great thing about MND/ASL is precisely that. It can be used to explain absolutely everything. πŸ˜‚πŸ˜β€οΈπŸ˜xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            #14
                            Hiya Chrissly54 I was the same realising I had symptoms some 18 months pregnant diagnosis. In a way I'm glad I didn't know.

                            Have you got decent support re palliative care team? Like Ellie stated maybe chase your respiratory team if a NIV is the route you wish to take.

                            This forum keeps it real and has been a huge help for me x
                            Diagnosed May 2021 bulbar onset als.

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