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  • PeterPan
    replied
    Hi Johnny5,

    No one really ever wanted to be here, but you're very welcome now you have arrived. There are many different people, seemingly all with different stories. All with different experiences, which can be very comforting. Yours is a particularly poignant story and I am so sorry that you're following your brother - albeit at a slower rate.

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  • Deb
    replied
    Hi John and a warm welcome to the forum. There lots of friendship and support on here .
    Love Debbie x

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  • Ellie
    replied
    Johnny5 Welcome Johnny.

    You need to have proper gene testing, given your brother also had ALS. xx

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  • Lynne K
    replied
    Hi Johnny and welcome to forums. Iโ€™m glad that your journey with MND is slower than your poor brotherโ€™s was. Love Lynne x

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  • LindaB
    replied
    Johnny5 welcome to the forum....great like minded people here...๐Ÿ‘๐Ÿค“

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  • Mary C
    replied
    Hi Johnny .
    Glad your journey seems to be slow.Hard that your saw your brother go through the MND quickly.
    Hope you get support on this forum
    Best wishes
    Mary

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  • Gordan1111
    replied
    Hi Jonny5. Welcome aboard the ship. We've all got scurvy, the lashings appalling and the boat's going down. Apart from that ... we're carrying on fine
    Last edited by Gordan1111; 9 July 2021, 09:29.

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  • denise
    replied
    Hi John from Florida

    so nice to meet you. Really lovely people here who are happy to share all kinds of problems, sadness and laughter.

    love and hugs Denise xxx

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  • matthew55
    replied
    Hey Johnny5 it's a bum deal make no mistake. But you won't find any sharks in here. More like mermaids. We are all in this together and you never need to feel alone pal. Welcome. Stay Strong Matthew.๐Ÿ‘๐Ÿ˜๐Ÿค—๐Ÿ˜‹xx

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  • Johnny5
    started a topic Hello

    Hello

    Hello,
    I am new, so an intro is good. I am Johnny5, aka, John from Florida. I first started symptoms (fasciculations) in the summer of 2015 after a lumber/nerve injury. By 2017 they had spread, and by 2018, weakness began setting in my left leg. Diagnosed w/possible ALS in Aug 2018, then probable ALS in Oct 2019. I still walk with a cane (slow walking) and most of my symptoms are on my left side, or asymmetric. I also have mild swallowing issues, and my voice is starting to get pretty hoarse. I am blessed with very slow progress.
    My brother had Bulbar ALS. He was diagnosed in Oct 2015 and left us on 6 Jan 2016. So far, no genetic familial tests have been run except for the C9orf72 (?) which was negative.
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