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  1. Thread: hi

    by Ellie
    Replies
    15
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    320

    I know Maz, there are no words to describe how...

    I know Maz, there are no words to describe how we feel about our failing bodies. It takes every bit of our strength and resilience to cope with this disease.

    You're the same person inside, that...
  2. Replies
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    Did the Neuro replicate the clonus in exam? ...

    Did the Neuro replicate the clonus in exam?

    Yeah, they are all upper motor neuron signs but don't necessarily mean you have an MND - and to be diagnosed with ALS, you need lower motor neuron...
  3. Replies
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    10,361

    It really should've been on Pressure Support from...

    It really should've been on Pressure Support from Day 1 :mad:

    You should not feel your ventilation support as being brutal in any shape or form!! It should mimic your breathing pattern and feel...
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    Hi Glos, Your symptoms don't really fit ALS as...

    Hi Glos,

    Your symptoms don't really fit ALS as you don't appear to have lower motor neuron signs and had normal EMG.

    Were the spasticity, Hoffman's & Babinski the only clinical signs the Neuro...
  5. Thread: hi

    by Ellie
    Replies
    15
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    320

    Ooh Maz, stardom and fame :D If you don't want to...

    Ooh Maz, stardom and fame :D If you don't want to sit in your wheelchair, can you sit in an armchair?

    Re icy lower limbs - even in summer my knees, lower legs and feet are icy to the touch! ...
  6. Replies
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    Pressure Support mode is best for augmenting...

    Pressure Support mode is best for augmenting breathing in people with respiratory failure due to ALS.

    However, I don't know your sleep study results Douglas and, if your Nippy is in Pressure...
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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...
  8. Thread: Falling !

    by Ellie
    Replies
    6
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    318

    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...
  9. Replies
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    7,720

    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...
  11. Thread: Clothing?

    by Ellie
    Replies
    4
    Views
    312

    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...
  12. Replies
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    10,361

    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...
  13. Thread: tandem jump

    by Ellie
    Replies
    17
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    612

    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...
  14. Replies
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    10,361

    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...
  15. 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...
  16. 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.
  17. Replies
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    10,361

    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.
  18. 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...
  19. Replies
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    10,361

    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...
  20. Replies
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    10,361

    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...
  21. Thread: Ibudilast

    by Ellie
    Replies
    19
    Views
    2,142

    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...
  22. Thread: Mum with MND

    by Ellie
    Replies
    12
    Views
    1,393

    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...
  23. Replies
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    10,361

    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...
  24. Thread: Adapted vehicles

    by Ellie
    Replies
    12
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    1,323

    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.
  25. Thread: Meltdown

    by Ellie
    Replies
    51
    Views
    5,103

    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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