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    Hi there

    Morning all,
    I'm coming out of the shadows after reading so many helpful posts on this forum. Husband (now aged 56) diagnosed with MND in 2018.
    Started with left foot drop and intense fasciculations. Now can no longer walk, talk, eat, but still has use of hands and arms (although arms very weak). On NIV overnight, feeding pump in the day and just had training on new cough assist. Also has grid pad and eye gaze. I've had to give up work, despite having a decent care package funded by CHC. Hence why I have a bit more time for this forum.
    Just wanted to break the ice and touch base........ and.... say how fab you all are on here.


    #2
    Mayflower Hi, sorry about your husbands deteriorating but glad that you’ve got CHC. Love 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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      #3
      Mayflower glad you've stepped out from the shadows - welcome to you and your husband. You're right lots of great people on here and at times it feels a lifeline....shared experiences.
      Now you've broken the ice I look forward to reading your posts and getting to know youπŸ‘πŸ»xx
      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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        #4
        Mayflower welcome to you both. It's a relief to "talk" to people who have shared your experiences and understand the pressures experienced by MNDers and their families and carers.
        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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          #5
          It's never too late to join the best bunch of heroes you will ever find, anywhere. Welcome home. πŸ€—πŸ‘πŸ˜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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            #6
            Sorry to hear about your husbands deteriorating condition, but he will be getting the best care possible from yourself and the CHC.

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              #7
              A warm welcome to the forum Mayflower Thanks for posting, the first one can be hard to do.

              Good to hear your husband has been awarded CHC πŸ‘πŸ‘ and I hope he has good community nursing and OT support.

              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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                #8
                Hi,@Mayflower
                Sorry to hear of your husbands deterioration.So pleased he has CHC funding.
                Its so hard for him not to be able to walk, talk and eat..I can relate to that as heading that way myself.Not easy for you either .
                Hope you both get support from this forum.
                Best wishes
                Mary x

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                  #9
                  HI Mayflower and a warm welcome to the forum,

                  I'm so sorry for your husbands deterioration. It's good you have CHC funding and I hope you're managing to take care of yourself too.

                  Thank you for making your first post. Its not an easy thing to do.
                  Love Debbie x

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                    #10
                    Welcolme Mayflower xx

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                      #11
                      Thanks everyone for your kind words. It's good to reach out. Our local community team is fantastic. Somtimes it does feel like a full time job coordinating everything, though.

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