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  • Tony
    replied
    Hi Teresa and welcome. Sorry to hear of your diagnosis and well done for posting. Lots of support here, sound advice and even a few laughs.

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  • Doggymama
    replied
    A welcome from me too. This forum really helps with the tough times and the good times too xx

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  • Derbyram21
    replied
    Hi welcome to the forum a place none of us wish to be on. Lots of supportive people on here x

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  • Olivia H
    replied
    Hi Rosie lots of support here, both shared experiences and practical wisdom ( Ellie is the oracle) Tough to deal with an illness that has, still, only management of symptoms and no effective treatments...but, you can live each day positively if you can adapt as you go along. x

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  • EvelynMW
    replied
    Hi Teresa Rosie Not a nice beginning. We met a 92 year old who got diagnosed very recently. Already unable to speak. She uses a write/rewrite board, but as her eyesight is poor, her writing is hard to read. She said the board only cost about £5! Very useful, and inexpensive. She wouldn't drink in front of others, it was too hard.

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  • Claireflo
    replied
    Hi Rosie sorry to hear you are newly diagnosed, its a really difficult time and all very overwhelming, especially at the beginng. That's great that you've been able to bank your voice and hopefully you have a speech therapist who will also look at your swallow and give you advice about consistency and thickeners for liquids.

    ​​​​​My dad had first signs of slurred speech in May 2020, diagnosed may 2021 with bulbar onset. I find the worst bit is the not knowing what will happen next and when. Until recently no one would comment on progression. The physio has now said that his is fairly slow for bulbar onset so whilst he has his challenges he still has his mobility and his sense of humour so I'm trying to focus on the positives more rather than constantly worrying about what's next.

    There are loads of great people on the forum for advice, to listen if you're having a bad day or for banter which will make you laugh (for example escape plans involving chinocks and torture methods for those less than helpful health care 'professionals'!)
    ​​​​​

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  • Rosie
    replied
    Thank you all for the lovely welcome. I can see there is a wealth of knowledge to be gained from everyone on here. I have to confess to feeling quite scared at the moment, it’s the uncertainty and the not knowing what and when things will change for me, at least now I am in the company of people in the same position as myself and I look forward to getting to know you all. xx

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  • Hope
    replied
    Hello Rosie and welcome. Look forward to hearing more from you. xx

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  • Karen62
    replied
    Hello, and welcome to the forum 🤗

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  • Piglet
    replied
    Hi Teresa. Welcome to our forum.xx

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  • denise
    replied
    Hi Teresa
    welcome to our place to hang out.
    denise xxx

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  • Tabbycat
    replied
    Welcome to the forum Rosie.

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  • shelly21
    replied
    Hi Teresa and welcome aboard. I am also bulbar onset. You will find so much experience here and tips etc.
    its a tough journey but for me the forum has been a lifeline x

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  • Heather R
    replied
    Hi Teresa, welcome xx

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  • JamesW
    replied
    Hi Teresa 👋👋👋👋👋
    Last edited by JamesW; 28 July 2022, 14:32.

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