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  1. Gosh MMW, how awful for you - I'm sorry for...

    Gosh MMW, how awful for you - I'm sorry for your woes.

    Love Ellie.
  2. Thread: Bookworm Quiz

    by Ellie
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    Nice one, Fiona!

    Nice one, Fiona!
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    Thanks Kate. Will the procedure be done with...

    Thanks Kate.

    Will the procedure be done with local anaesthetic or a light general?

    Love Ellie.
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    There is no such thing as "giving up too easily",...

    There is no such thing as "giving up too easily", just do what's right for you :)

    I go to the loo several times per day Hayls but I have carers, so, for me right now, it's very doable.

    I know...
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    Jojo, you need to consider yourself too - if...

    Jojo, you need to consider yourself too - if you injure yourself, you'd both be in trouble, your partner would have nobody to help him. and you'd be laid up with a back injury :( You're in this...
  6. Thread: Opinions please

    by Ellie
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    Oh I can empathise! My jaw hangs too but my...

    Oh I can empathise!

    My jaw hangs too but my upper teeth overhang my lower teeth, so I only chomp my cheeks when I sneeze :) I wear a light gumshield in bed, which my dentist made, and I guess...
  7. Thread: Opinions please

    by Ellie
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    MND Connect are off until Tuesday, Matthew. ...

    MND Connect are off until Tuesday, Matthew.

    May I ask in the meantime - in what way are they driving you mad(I hope you're not in pain...) and are you talking about having all of the other 3...
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    Jojo, if he struggles getting out of bed, would...

    Jojo, if he struggles getting out of bed, would your partner consider getting a profiling/hospital bed?

    I know they're not everyone's cup of tea - I resisted for a long while myself!! - but...
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    The length of time to get a diagnosis varies...

    The length of time to get a diagnosis varies widely Matthew, as there are several contributing factors to the whole process, such as symptoms, waiting times for consultant and diagnostic tests, the...
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    Thanks for that. Are you happy with how it...

    Thanks for that.

    Are you happy with how it turned out?
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    Great to hear that, Miranda. Do you have the...

    Great to hear that, Miranda.

    Do you have the free version or did you upgrade and customise?

    As an FYI to others, it's also available for Android.

    Love Ellie.
  12. Thread: Breathing

    by Ellie
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    Oh Arta, how utterly insensitive of that lady to...

    Oh Arta, how utterly insensitive of that lady to say what she said, when the reality is she hasn't a clue about your prognosis :mad:

    The great news is your lung capacity hasn't deteriorated in 5...
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    Hi Matthew and Welcome to a forum nobody wants to...

    Hi Matthew and Welcome to a forum nobody wants to join...

    Ordinarily your speech & language therapist (SLT), assistive technology service (AT or AAC) would be a good source for info and devices...
  14. Thread: Teeth Brushing

    by Ellie
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    Aww, but that's the fun bit Miranda :D:D:D

    Aww, but that's the fun bit Miranda :D:D:D
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    Oh I'm glad your Wingwoman is going with you...

    Oh I'm glad your Wingwoman is going with you tomorrow :)

    Yes, things do move quickly at first - so many disciplines to meet for baseline measurements etc., then it eases off.

    No I didn't get...
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    Oh yes, the first few appointments can be hard...

    Oh yes, the first few appointments can be hard Andrew and particularly because you often see people who are much more advanced than you are and the reality hits you like a ton of bricks - be...
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    I won’t keep badgering you after this :rolleyes:...

    I won’t keep badgering you after this :rolleyes:


    Oh, I didn't realise you were on a neurology ward with an MND Consultant, perhaps the hospital is one with an MND Clinic (MND Clinics are part...
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    Then why don't you get the full EMG reports and...

    Then why don't you get the full EMG reports and go to an MND Clinic where they know MND, it's their expertise. If it does turn out to be an MND, you'll be in the right place.

    Depending on which...
  19. Thread: Feeling Brave

    by Ellie
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    Welcome brave Tess ;) Really sorry to hear of...

    Welcome brave Tess ;) Really sorry to hear of your BF's diagnosis - is he on any drug trial or starting one once things calm down somewhat?

    I remember I had butterflies in my tummy when I...
  20. Thread: Teeth Brushing

    by Ellie
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    Hi Tess and welcome to the Forum. It's most...

    Hi Tess and welcome to the Forum.

    It's most definitely not a ridiculous question !!

    I'm the teeth brushing recipient, not the (poor) brusher :) but this is how we manage:

    I have no useful...
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    Although I am limb onset Andrew, I developed all...

    Although I am limb onset Andrew, I developed all of the bulbar symptoms not long after diagnosis.

    Like many on the Forum, I have no speech so I use text-to-speech on my PC, I've swallowing issues...
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    Your EMG is concerning - was there not an...

    Your EMG is concerning - was there not an opinion/conclusion given in the letter you got for the EMG report? If not, ask for it and if they can’t or won’t, contact patient records at the hospital...
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    OK, thanks. That sounds like bulbar onset - ...

    OK, thanks. That sounds like bulbar onset - you might hear that term used by the healthcare professionals.
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    And the results of the 2nd EMG, do you have those...

    And the results of the 2nd EMG, do you have those yet?

    Do you have the summary of the 1st EMG - it should provide some clue as to what may be going on and if a motor neurone disease is in the...
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    And the MND specialist wasn't concerned enough re...

    And the MND specialist wasn't concerned enough re it being MND to do/refer you for an EMG?

    Have you had pulmonary function tests, swallow study, speech assessments? And presumably you have to use...
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