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  1. Replies
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    Yes me too, it means I can't use my eye gaze to...

    Yes me too, it means I can't use my eye gaze to explain what's so funny or chat for quite some time :D:D
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    Would you give the Citalopram another try Terry,...

    Would you give the Citalopram another try Terry, half a tablet even, as you said, given the side effects are usually transient?

    I hate the thoughts of you missing out socially :(

    Love Ellie.
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    Hi Dina, I'll give you my experience of my...

    Hi Dina,

    I'll give you my experience of my mild Emotional Lability (aka PBA PseudoBulbar Affect)

    I've the 'laughing type' too, which, if I could choose to have either the laughing or crying...
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    Oh Glos, I am so sorry and can understand why...

    Oh Glos, I am so sorry and can understand why it's all a blur for you and probably for your wife too.

    It'll take a while for it to sink in and the fog to clear, so I won't overwhelm you by saying...
  5. Thread: Struggling

    by Ellie
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    Hi Mama Rics, I am so sorry you're feeling...

    Hi Mama Rics,

    I am so sorry you're feeling like this.

    I can only echo the advice already given but would stress that it's not OK for your husband to demand that you, and you alone, should care...
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    Dina, I'm sorry but I copied and pasted your...

    Dina,

    I'm sorry but I copied and pasted your post out of Mama Ric's thread as I am sure you wouldn't want this sensitive topic to go off point and upset Mama Rics - I hope you are not...
  7. This MND Research blog is an update from a...

    This MND Research blog is an update from a clinical trial of Truimeq, a repurposed HIV drug.

    https://mndresearch.blog/2019/07/17/could-mnd-be-treated-by-hiv-drugs/

    Love Ellie.
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    All the best Glos. Hope you get even an...

    All the best Glos.

    Hope you get even an inkling as to what's going on with you.

    One thing to remember is that you're going to a very good & experienced Neurologist, which is great.

    Don't...
  9. Thread: Silverstone

    by Ellie
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    Oh no Barry, that sounds painful :(:( You know...

    Oh no Barry, that sounds painful :(:(

    You know yourself it could have been a lot worse so I won't lecture you on the importance of staying upright....

    Hope you heal quickly and glad your 'happy...
  10. Thread: Silverstone

    by Ellie
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    What an active day you had Terry! I managed to...

    What an active day you had Terry!

    I managed to propel my chair about 45m between the patio and the TV a few times, food pump attached :D:D

    Spent most of today outside making friends with a...
  11. Thread: Silverstone

    by Ellie
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    You mean you didn't watch that very exciting...

    You mean you didn't watch that very exciting tennis match???

    Wrong man won unfortunately :(:( but it was one epic match.
  12. Thread: Silverstone

    by Ellie
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    That was KJen Terry who bought tickets for her...

    That was KJen Terry who bought tickets for her husband.

    She last logged on 2 weeks ago but I hope they'd a great day if they went.

    Love Ellie.
  13. Thread: Pressure Sores

    by Ellie
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    Debbie, no harm in getting your GP to prescribe...

    Debbie, no harm in getting your GP to prescribe Cavilon or Proshield barrier cream for any vulnerable areas of your skin, i.e. any body part in constant contact, or almost constant contact, with a...
  14. Thread: Wow

    by Ellie
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    Wow indeed Doug. What an epic undertaking...

    Wow indeed Doug.

    What an epic undertaking these two ladies (& Alice the bike :)) have embarked on!!!

    They've a weekly blog on the website and are also on FB, Insta & Twitter - I don't think...
  15. Thread: Pressure Sores

    by Ellie
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    Before an area gets red Kayleigh, the skin often...

    Before an area gets red Kayleigh, the skin often first looks 'dry' or greyish and is a painless warning sign that the tissue below isn't happy - the redness and soreness appear later.

    And you...
  16. Thread: Pressure Sores

    by Ellie
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    It's bad but good that you know how serious...

    It's bad but good that you know how serious pressure sores can be, Dina.

    Do you think your air mattress and air cushion are good enough?

    Hope you don't have to wait long for your wheelchair...
  17. Thread: Pressure Sores

    by Ellie
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    Hi Dina, I'm sorry you've a sore bottom and I...

    Hi Dina,

    I'm sorry you've a sore bottom and I don't want to sound alarmist, but you need to act fast to stop the pressure area developing further.

    First off, your wheelchair cushion isn't good...
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    Hope you slept reasonably well after that...

    Hope you slept reasonably well after that ill-planned, traumatic day Douglas - you must have been exhausted :(

    So glad you're out of hospital... There's no place like home, as the saying...
  19. I'm so glad things are a wee bit brighter...

    I'm so glad things are a wee bit brighter Wailywoo - hopefully once he gets the walkers he can feel more confident about getting around the place safely, and find his mojo...

    We can be a...
  20. Thread: Sam

    by Ellie
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    Hi Sam & welcome. These links show current...

    Hi Sam & welcome.

    These links show current trials in the UK:

    https://clinicaltrials.gov/ct2/results?recrs=ab&cond=Amyotrophic+Lateral+Sclerosis&term=&cntry=GB&state=&city=&dist=
    ...
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    Great news Douglas. Are your CO2 levels under...

    Great news Douglas.

    Are your CO2 levels under control then?

    Love Ellie.
  22. Sorry Doug, IDK how I somehow missed this thread ...

    Sorry Doug, IDK how I somehow missed this thread :rolleyes:

    That's great news on being 5 years cancer free.

    That's one nail you can take out of your coffin ;)

    Love Ellie.
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    Barry, Any idea if it'll be videoed and...

    Barry,

    Any idea if it'll be videoed and available to view afterwards?

    I get the live streaming attendance v cost issue - I am an avid attendee on MND-related live stream events, but...
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    Welcome to the Forum Watty and sorry for your...

    Welcome to the Forum Watty and sorry for your mum's diagnosis - it's a lot to take in.

    No one knows what life expectancy PBP, or any other MND, carries with it and people vary widely in how long...
  25. Wailywoo, I am so sorry he rebukes every offer...

    Wailywoo, I am so sorry he rebukes every offer of help, this must be so difficult for you - A) he's making his own life more difficult, precarious and painful and B) he's making your life more...
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