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    #1

    Mum recently diagnosed

    Hi everyone,

    I just wanted to introduce myself after lurking for a few weeks. My mum has recently been diagnosed with MND. It was a complete shock to our family as this had never previously been mentioned by any doctors/consultants she had seen previously. This past month has been such a whirlwind of shock and sadness and I have found it difficult to come to terms with her diagnosis. I have tried to learn as much as possible about MND so that I can help her in the best way possible. From what I have seen from this forum, there is a great sense of community and I look forward to talking with you all more in the future.

    Ellie
    Tags: None
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    #2
    A warm welcome to the forum Ellie, and also to your Mum.

    Yes, the initial post-diagnosis period is a whirlwind for sure but your head will learn to come to terms with what's happening, can't say the same for your heart but that's because you love your Mum so much and it's that love that will help you cope.

    Looking forward to getting to know you.

    Love Ellie 😘
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user    .
    ​
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      #3
      ellie256 sorry to hear about your mum's diagnosis...hope to hear from you both and welcome to the forum πŸ‘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
        ellie256 welcome Ellie and your mum. It is a huge shock to come to terms with. I hope that your mum gets all of the support services on her case quickly. 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.
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          #5
          Welcome ellie256 - I am also still in that whirlwind phase, but this group is so kind and supportive. I hope you and your Mum get all the support you need xx
          Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

          Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
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            #6
            ellie256 Sorry you are here but its a great group. These first few months are tough re the many departments and appointments etc.

            maybe start a notebook with all the different people etc that become involved eg: mnd nurse, speech therapist.

            it becomes so busy and scary. But eventually it slows down. X
            Diagnosed May 2021 bulbar onset als.
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              #7
              Hi Ellie
              So sorry to hear about your Mum, my Dad was diagnosed in December and it has been a very hard couple of months. He is over all his initial appointments now and things have started to settle down a bit.

              From my short experience it's about finding ways to adapt but carry on with life. Dad is finding walking very difficult now but was determined to carry on, it was exhausting him and limiting him being out of the house. We convinced him to get a mobility scooter and they have now already planned a short holiday away and days out, things they did all the time but hadn't done in 6 months.

              My biggest worry lately is my Mum, she is very down and finding the changes difficult to cope with but being a Mum she doesn't complain and just gets on with it. We are finding ways to give her a break and let her have time to herself without worrying about leaving Dad.

              Overall Dad is doing well but we know this is just the beginning so important to make the most of every bit of time we have.

              Hope you are getting lots of support, I have to say that our specialist nurse has been excellent so far.
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                #8
                Welcome ellie256.
                This is a great place or support and friendly advice.
                Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.
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                  #9
                  Welcome aboard ellie256 you are definitely in the right place for support, advice and and love in abundance. So sorry to meet you but very happy you're here. Stay Strong. πŸ’ͺπŸ‘πŸ˜˜β€οΈ 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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