My mum battled valiantly against MND; she made the brave decision to withdraw all active treatment a couple of weeks’ ago. She passed away peacefully at home in the early hours of Monday morning. I miss her so much. I hope she is at peace now and pain free x
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My mum x
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May she journey well ❤️
Take comfort that she bravely went on her own terms, and is dearly missed.
Hugs to you.Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring.
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So sorry to hear your news. But your mum was clearly a very brave lady and will be at peace now. Things must feel very different for you though. Sending hugs xxDiagnosis 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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Thank you everyone for your kind words. Mum fought so bravely and the fact that it was peaceful at the end is all that any of us can hope for when we go. This forum is such a support and has been a great place for me to seek advice and get information. I’m determined to do something for MND in mum’s memory at some point in the future. I want to raise awareness. It’s only when MND enters your life, you realise how little people know about it. Sometimes I was asked what ‘MND’ stood for. A cure needs to be found or at the very least a treatment that alleviates symptoms. You’re right TinyLady, it’s gone from non-stop all day and juggling that alongside working, to nothing overnight. It’s such a change and I feel rather lost. Obviously there’s lots of things to arrange and sort out but it kind of doesn’t feel like much in comparison to the intensity of the last few months. XxLast edited by Mymothersdaughter; 3 August 2022, 10:21.
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Mymothersdaughter What a huge hole in your life that was so rushed before, a huge loss of your mother. So glad it was peaceful and she is at peace now. We are fortunate to have a choice to withdraw treatment and be supported, but it’s a very hard decision . Thanks for thinking of raising awareness in the future when you are ready. Sending you love and strength xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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Mymothersdaughter I'm so sorry for your loss - it must be such a deep and intense loss so remember to look after yourself and to be kind to yourself, as you grieve for your worderful mum.
Heartfelt condolences.
Love Ellie xxDiagnosed 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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Thank you Heather R and Ellie. You have summed it up well. I’m feeling such a chasm with mum not being here. I’m trying to remember all the good times when she was well and remembering that she lives on within my heart. People with MND have incredible inner strength. I saw it in mum and I feel it in everyone here. X
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I'm so very sorry for the loss of your beloved mum Mymothersdaughter
It sounds like you are an absolutely wonderful daughter and I hope that ,in time your happier memories will bring you comfort.
Take care of yourself. Xxx
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Mymothersdaughter what a lovely name you call yourself. Sending you love at this sad time, at least your Mum is at peace now.
Take care of yourself xx
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