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  1. Replies
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    Can either of you access anyone else's profile? ...

    Can either of you access anyone else's profile? Click on a user's name and you'll see options inc 'View Profile' or click on someone's avatar.

    Can you private message?

    I suspect it's an Admin...
  2. Thread: Als

    by Ellie
    Replies
    2
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    167

    Nigel's progression is fairly fast but...

    Nigel's progression is fairly fast but unfortunately not overly unusual.

    Is his progression pretty steady or does he go through periods of progression before a few brief weeks of respite? None...
  3. Thread: Mood swings

    by Ellie
    Replies
    1
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    124

    Oh Puddy, I am so sorry you are both having such...

    Oh Puddy, I am so sorry you are both having such a hard and emotional time, especially as you're both in Spain and away from many family members and friends.

    It's tough enough to get through the...
  4. Thread: Saliva problems

    by Ellie
    Replies
    3
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    218

    Hopefully the increased Carbocisteine will help,...

    Hopefully the increased Carbocisteine will help, as well as the extra water - I know it's hard to take in at least 1800ml because what goes in must come out :rolleyes: but personally, I find...
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    Welcome to a different Band of Brothers, Donkey...

    Welcome to a different Band of Brothers, Donkey Boy, but sorry you've had to join us. We have a few firefighters on board.

    I am desperately sorry also about you losing a child - there must be...
  6. Thread: Saliva problems

    by Ellie
    Replies
    3
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    218

    Hi Sarah, You may need to up the dose of the...

    Hi Sarah,

    You may need to up the dose of the carbocisteine for it to be effective - often meds need +/- titration over time - ask your GP/nurse.

    Other things which may help are: (I am...
  7. Replies
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    Oh wow, Barry - I hope you booked a slot for 3...

    Oh wow, Barry - I hope you booked a slot for 3 weeks time?

    And no harm to book future slots on an ongoing basis as soon as those dates are released - early bird catches the worm and all that!...
  8. Thread: Advice Please?

    by Ellie
    Replies
    9
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    637

    Genuine posts are always welcome, Bondi, and we...

    Genuine posts are always welcome, Bondi, and we do our best to answer any questions asked.

    Hopefully your GP can allay your fears tomorrow.

    All the best.

    Love Ellie.
  9. Thread: Advice Please?

    by Ellie
    Replies
    9
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    637

    Hi Bondi, I'm sorry you're going through this....

    Hi Bondi,

    I'm sorry you're going through this.

    You've had face-to-face consultations with 2 different Neurologists, both of whom examined you and thankfully found nothing suggestive of MND,...
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    Thanks for that update Miranda. Stay safe. ...

    Thanks for that update Miranda.

    Stay safe.

    Love Ellie.
  11. Replies
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    Online Supermarket Shopping

    Given that home delivery slots are almost impossible to secure, consider trying to get a "Click & Collect" slot, which are marginally easier to get than home delivery.

    I know someone needs to go...
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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...
  14. Thread: Nippy 4

    by Ellie
    Replies
    16
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    1,764

    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...
  15. Replies
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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.
  16. Replies
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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...
  17. Thread: Newly diagnosed

    by Ellie
    Replies
    11
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    1,615

    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.
  18. 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...
  21. Thread: Nippy 4

    by Ellie
    Replies
    16
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    1,764

    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...
  22. Thread: Nippy 4

    by Ellie
    Replies
    16
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    1,764

    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...
  23. Thread: Freaking out

    by Ellie
    Replies
    6
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    802

    Can you see this? 1129

    Can you see this?

    1129
  24. Thread: Freaking out

    by Ellie
    Replies
    6
    Views
    802

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

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

    by Ellie
    Replies
    6
    Views
    802

    What did the Neuro say on Thursday?

    What did the Neuro say on Thursday?
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