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  1. Replies
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    Hi Vix and a warm welcome to you both. Sorry...

    Hi Vix and a warm welcome to you both.

    Sorry you’ve had to join us and I know how difficult it is to make that first post - it makes it so awfully real :(

    Your husband does seem to be a...
  2. Thread: Falling !

    by Ellie
    Replies
    6
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    225

    Oh no Debbie, commiserations to you. It must...

    Oh no Debbie, commiserations to you. It must have been a frightening experience for you both.

    I’m glad you were well looked after and how lucky are you to have such a fabulous GP!!

    Do you...
  3. Replies
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    Hi Andy, At least 4 Neurologists have examined...

    Hi Andy,

    At least 4 Neurologists have examined you and told you that you do not have ALS/MND.

    You have had multiple EMGs, none of which showed problems suggestive of ALS/MND.

    You said...
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    Hi Vicky, Do you mean your dad has difficulty...

    Hi Vicky,

    Do you mean your dad has difficulty pressing the actual switch or is it that he presses the switch and can't get further in that app?

    If it's the former, would it be easier to use a...
  5. Thread: Clothing?

    by Ellie
    Replies
    4
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    298

    Hi Vicky, Maybe Dropfront Trousers might suit...

    Hi Vicky,

    Maybe Dropfront Trousers might suit him?

    Take a look at these and scroll down for the short video: https://www.able2wear.co.uk/dropfront-wheelchair-chino-trousers.html

    Or...
  6. Replies
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    10,134

    It's certainly turning into a saga Douglas, I'm...

    It's certainly turning into a saga Douglas, I'm sorry.

    Hope the sleep study gives relevant information on what's happening during your nocturnal breathing - be it apnoeas, actual BPM (breaths per...
  7. Thread: tandem jump

    by Ellie
    Replies
    17
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    571

    Good for you Maz. YOLO :D:D Glad to hear...

    Good for you Maz. YOLO :D:D

    Glad to hear the MNDA has been good to you.

    Feel free to post your Just Giving page link either by editing your original post or putting it in a new post.

    And...
  8. Replies
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    10,134

    Surely they can take blood from an artery if they...

    Surely they can take blood from an artery if they had such difficulty taking blood from your earlobe?

    If done by an experienced hand, it isn't a painful thing - I've had a few done - and it...
  9. Replies
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    I am sorry your outing was ruined by such an...

    I am sorry your outing was ruined by such an ignorant and selfish driver :mad:

    The fact that the parked car is on a pavement and is causing an obstruction to a wheelchair user should incur a...
  10. Replies
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    That's good to hear Douglas - the CO2 level is...

    That's good to hear Douglas - the CO2 level is heading in the right direction.

    Enjoy your TV !!

    Love Ellie.
  11. Replies
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    700ml sounds right for your target...

    700ml sounds right for your target weight/previous weight of 98kg, so your settings may need more tweaking.

    That alarm can be muted btw...

    Hope tonight is a good one!

    Love Ellie.
  12. Replies
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    Sorry you had such a rough night Douglas, hope...

    Sorry you had such a rough night Douglas, hope you can catch up on some sleep today (if the ward isn't akin to a railway station)

    Although I think I know what your reply will be... Did the nurse...
  13. Replies
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    That should push the importance of having the...

    That should push the importance of having the feeding tube fitted Douglas.

    If they're keeping you in hospital, it's the perfect opportunity to have the procedure and they're obviously giving you a...
  14. Replies
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    Douglas, you have to look on the bright side - ...

    Douglas, you have to look on the bright side - at least they did the video flouroscopy on your swallow :D

    Thankfully I got a digestive biscuit, as I loathe Jaffa cakes!!

    I'm sorry your CO2...
  15. Thread: Ibudilast

    by Ellie
    Replies
    19
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    2,122

    Hi Mandy / Mr Mandy? Really hope it works out...

    Hi Mandy / Mr Mandy?

    Really hope it works out well for you and preliminary results did show Ibudilast showed more promise in bulbar-onset people, of which you are one.

    Best of luck getting to...
  16. Thread: Mum with MND

    by Ellie
    Replies
    12
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    1,371

    Hi Roo, Sorry to hear your mum gets little...

    Hi Roo,

    Sorry to hear your mum gets little help from the hospice.

    Following on from Barry's post: The next time the MND Nurse / specialist visits her at home, a cognitive, behavioral and...
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    Oh Douglas, I hope it won't take that long :( ...

    Oh Douglas, I hope it won't take that long :(

    Did you manage to get anyone to look at the settings? Maybe next time your wife is in she might take a pic of the screen?

    Glad you're getting...
  18. Thread: Adapted vehicles

    by Ellie
    Replies
    12
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    1,293

    You and me both, Dina. I'm getting to know you...

    You and me both, Dina.

    I'm getting to know you better :o

    Love Ellie.
  19. Thread: Meltdown

    by Ellie
    Replies
    51
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    5,041

    You're better off without carer X, Dina - it's...

    You're better off without carer X, Dina - it's so important to have complete trust in each and everyone of your carers. (I've done the same with 2 carers over the years for lying)

    That...
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    Really hope they sort you out quickly Douglas so...

    Really hope they sort you out quickly Douglas so you can get home to your comforts!!

    Big hug to you.

    Love Ellie.
  21. Replies
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    Kudos to you Douglas for posting in your current...

    Kudos to you Douglas for posting in your current position!!

    I'm a bit worried the Nippy might be in CPAP mode, or the EPAP / PEEP setting is too high, and that's why your CO2 remains high. If you...
  22. Thread: Adapted vehicles

    by Ellie
    Replies
    12
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    1,293

    Hi Dina, The chair should manage 4cm kerbs...

    Hi Dina,

    The chair should manage 4cm kerbs without a problem. The drive might feel a bit odd as it's a mid-wheel drive so, as you say, it may just take time for you to build up some confidence in...
  23. Replies
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    Hi Douglas, You could ask the Dietitian if it...

    Hi Douglas,

    You could ask the Dietitian if it would be suitable to add in some Calogen Extra into your daily routine of Fortisips - just 30ml gives 120 calories.

    Can you see the settings on...
  24. Replies
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    +1 Not with the hospital food by the sounds of...

    +1

    Not with the hospital food by the sounds of it ;)

    Seriously though Douglas and I know I keep banging on about it, your dramatic weight loss needs to be addressed ASAP.

    Love Ellie.
  25. Thread: Adapted vehicles

    by Ellie
    Replies
    12
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    1,293

    That's great Debbie - just in time for summer ...

    That's great Debbie - just in time for summer :cool:

    Hope the spec on the wheelchair is good and it's comfortable. You have to go pick up your wheelchair?? (Is that normal?)

    Love Ellie.
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