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  1. Replies
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    Hi R and sorry to hear of your potential...

    Hi R and sorry to hear of your potential diagnosis and how your very thoughtful Neurologist suggested Kennedy’s as a potential diagnosis :mad::mad:

    I know very little about Kennedy’s but have you...
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    Hi Neil, I am sorry you are going through...

    Hi Neil,

    I am sorry you are going through this.

    I don’t know if it’d help to look at your symptoms logically and rationally by breaking down what you posted?


    Fasciculations are sometimes...
  3. Thread: Nippy 4

    by Ellie
    Replies
    16
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    1,454

    No need to apologise, mate. If your body has...

    No need to apologise, mate.

    If your body has had enough, the bravest thing to do is to let go - harsh though that will sound to many who haven't lived this very difficult life for years... You...
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    Sorry to hear of Steve's woes, Sue - given the...

    Sorry to hear of Steve's woes, Sue - given the current situation, if you've even the slightest concern his chest infection may be back, contact his GP.

    Love Ellie.
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    Posted on the MNDA website today: "The MND...

    Posted on the MNDA website today:

    "The MND Association is extremely concerned to see that people with MND have not been included in the Government’s list of extremely vulnerable persons in their...
  6. Thread: Newly diagnosed

    by Ellie
    Replies
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    1,341

    Lizzie, your local branch will have an email...

    Lizzie, your local branch will have an email contact.

    Search for local support: https://www.mndassociation.org/support-and-information/local-support/find-local-support/

    Love Ellie.
  7. Replies
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    Doug, I'd say CF, COPD & asthma are mentioned as...

    Doug, I'd say CF, COPD & asthma are mentioned as they are lung conditions - MND doesn't cause damage to our lungs themselves - I did see reference to neuromuscular diseases elsewhere, so I think...
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    I suspect it’s a ‘Yes’, Miranda, but whilst...

    I suspect it’s a ‘Yes’, Miranda, but whilst you’re waiting for confirmation, this is an extract an NHS document and the full document is worth reading: ...
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    I love the portrait of your mum, Doug - really...

    I love the portrait of your mum, Doug - really special.

    I'm fortunate that both my kids are here with me, staying put, but of course I couldn't see my mother or grandmother today - well not...
  10. Thread: Nippy 4

    by Ellie
    Replies
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    1,454

    Yes I heard smooth faces get better seals. Sorry...

    Yes I heard smooth faces get better seals. Sorry the cat has lost his whiskers :(

    The straps can be snug, rather than tight, but they shouldn't hurt.

    Leave it tonight, give your face a...
  11. Thread: Nippy 4

    by Ellie
    Replies
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    1,454

    That's a nice mask Terry, generally quite...

    That's a nice mask Terry, generally quite comfortable.

    It could be the wrong size but you were probably measured for it in Papworth - what size is yours? The mask rim shouldn't sit on the side...
  12. Thread: Freaking out

    by Ellie
    Replies
    6
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    679

    Can you see this? 1129

    Can you see this?

    1129
  13. Thread: Freaking out

    by Ellie
    Replies
    6
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    679

    Sure, use the Private Message (PM) facility - ...

    Sure, use the Private Message (PM) facility - click on my name and you'll see ' Private Message'.
  14. Thread: Freaking out

    by Ellie
    Replies
    6
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    679

    What did the Neuro say on Thursday?

    What did the Neuro say on Thursday?
  15. Thread: Nippy 4

    by Ellie
    Replies
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    1,454

    Hi TC, Is it the mask causing the problems...

    Hi TC,

    Is it the mask causing the problems rather than the Nippy - as in, does the air pressure feel OK?

    If it is, what mask is it - does it look like this?

    1125

    Love Ellie.
  16. Do you have MND?

    Do you have MND?
  17. Replies
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    1124

    1124
  18. Replies
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    Barry, was this you?? Listen to this...

    Barry, was this you??

    Listen to this shortish radio phone-in clip for a much needed laugh :D:D:D


    https://www.youtube.com/watch?v=FOKKPJzr-4w&feature=youtu.be
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    Could this be it I wonder ...

    Could this be it I wonder https://apps.apple.com/us/app/text-to-speech/id712104788

    Your mum can try it out and if it's no use, she can ask the SLT for better ones.
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    Oh, that's just the Covid-19 elephant stalking me...

    Oh, that's just the Covid-19 elephant stalking me !!

    Glad you found a workaround for turning in bed.

    Beautiful spring day and we now have more daylight hours than night time - woohoo!!
    ...
  21. Thread: Ibuprofen

    by Ellie
    Replies
    4
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    641

    The NHS website has been updated and says to take...

    The NHS website has been updated and says to take paracetamol for a fever.
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    Hey Terry, I think you're right in getting a...

    Hey Terry, I think you're right in getting a BiPAP machine for a 'just in case' event - such a shame you have to be an inpatient though.

    Before you leave, make sure you are comfortable with its...
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    Sar, when I started pump feeds, my regimen was...

    Sar, when I started pump feeds, my regimen was started off at 25ml/h and taking 100ml (if I remember correctly) It took 10 days to work up to 500ml at 125ml/h BUT I had the luxury of being able to...
  24. Thread: Ibuprofen

    by Ellie
    Replies
    4
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    641

    Yes Debbie, thanks for sharing. There seems to...

    Yes Debbie, thanks for sharing. There seems to be conflicting information regarding taking anti-inflammatories (not just ibuprofen) if you've Covid-19.

    It started with French doctors saying not...
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    Did you not have an EMG and NCS (nerve conduction...

    Did you not have an EMG and NCS (nerve conduction study) too?
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