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Belated Introduction

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    Belated Introduction

    So I've posted on the forum a few times - but didn't really introduce myself properly. I was caring for someone very close to me with MND - who sadly passed away in the past year. Things progressed very rapidly - and I did my best to help. But as many of you will be all too well aware - you're forever playing catch-up with this awful disease. Just when you get on top of one issue something new rears its head.

    Sorry if I seem a bit cagey with details - but partly due to my job - and partly because someone else in the family may be having some tests for MND - I'm trying to avoid being easily identifiable.

    I'm still visiting the forum because I may be able to offer some help/advice in some areas. I've got quite a bit of experience dealing with things like NHS CHC funding - and dealing with other services. Also know quite a bit about different types of equipment and procedures etc.

    #2
    Hi Fjay
    nice to hear from you. Sorry for what you and your friend and family have been through and might be going through again. More people that post with ideas and help the better.
    when i can think of something profound i will update this.

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      #3
      fjay thanks for sharing that with us. Sorry for your loss and current concerns. You sound as if you have a lot of useful experience and knowledge that we could benefit from. Heather x
      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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        #4
        Welcome to the forum.
        Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive ๐Ÿ˜บ.

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          #5
          Welcome fjay and good to meet you. I'm also a little cagey about all my details, although most people have found out I am called Rachel ๐Ÿ™‚

          I really appreciate that you are willing to hang about to offer your invaluable experience and support, despite your sad loss. I hope to see more from you xx
          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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            #6
            fjay A proper welcome to you so ๐Ÿ˜‰๐Ÿค—๐Ÿ˜˜
            โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            โ€‹

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