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  1. Replies
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    Andy, Do St Thomas's resp team give you full...

    Andy,

    Do St Thomas's resp team give you full Pulmonary Function Tests (PFTs) too or, at least, does someone regularly monitor your PFTs and keep an eye on your FVC/SVC, MIP, MEP etc? (I think I...
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    My Good Thing today is that I had a sublime ...

    My Good Thing today is that I had a sublime massage this afternoon :D

    Feelin chilled, warm and can smell the essential oil still on me.

    Hope everyone is managing to keep warm and safe.
    ...
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    Hi Sheila, I hope you get on well on Monday. ...

    Hi Sheila,

    I hope you get on well on Monday. I know you will be anxious at the appointment, but you know a bit of information about feeding tubes and you now know lots of your new friends who...
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    Hi Sarah, Hope next week goes to plan. Love...

    Hi Sarah,

    Hope next week goes to plan.

    Love Ellie.
  5. Thread: Frieda

    by Ellie
    Replies
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    851

    Baclofen - Getting The Dose Right is Key

    Baclofen, and other antispasmodic drugs, are an important meds in the management of MND. Very many of us would be in constant pain and discomfort without them and/or have different levels of...
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    Sheila, It could well be reflux, given that...

    Sheila,

    It could well be reflux, given that you've a burning/hot feeling which mostly happens lying down.

    Because our tummy and chest musles weaken, reflux often rears its ugly head :( and...
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    Yes Sheila, could you please explain more so we...

    Yes Sheila, could you please explain more so we can help you?

    Has it only recently started?

    Is it just chest muscles that jerk rather than a 'startle' type of reflex?

    And have you any...
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    When I saw that "h", I thought, Oh Oh....

    When I saw that "h", I thought, Oh Oh....
  9. Thread: What Now?

    by Ellie
    Replies
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    Chrissie, Book a weekend away for you and the...

    Chrissie,

    Book a weekend away for you and the chap, doesn't have to be far nor expensive.

    Tell your Gran you're at breaking point and need time out and will be into see her on xxxday at xxx...
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    Chrissie, you're right to say the special MNDA...

    Chrissie, you're right to say the special MNDA Neuro Spec powerchairs are best suited to Doug.

    For us, a wheelchair is NOT about getting from A to B, but needs to provide comfortable seating,...
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    I don't blame you for being upset Chrissie and...

    I don't blame you for being upset Chrissie and your health issues *should* be taken into account - your ailments are just as relevant as Douglas's, especially if they impact on your ability to...
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    Andy, how macho are you ;) There are lots of...

    Andy, how macho are you ;)

    There are lots of full face masks out there, so I'm sure there's one that won's cause you skin trauma.

    My one, for example, has different settings at forehead level...
  13. Thread: Frieda

    by Ellie
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    Sorry to hear that Frieda - you can do without...

    Sorry to hear that Frieda - you can do without blasted diarrhoea :(

    Hope you find its cause. Daft as this seems but are you constipated too by any chance?

    Love Ellie.
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    So glad you got a boost from your day out...

    So glad you got a boost from your day out yesterday Dina - richly deserved.
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    Debbie, that's a definite Win-Win for you (and...

    Debbie, that's a definite Win-Win for you (and the ramp :D)
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    Andy, Hopefully that N30 mask will suit you,...

    Andy,

    Hopefully that N30 mask will suit you, but, if you're a mouth breather, a nasal pillow may not be the best option - full face masks are better because of their better seal.

    Is your mask...
  17. Thread: Jude

    by Ellie
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    Gosh ladies, I do hope those pressure relief...

    Gosh ladies, I do hope those pressure relief mattresses come very soon - I know I am always banging on about pressure sores :rolleyes: but they are definitely to be avoided. I worry when I hear...
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    Wrap up well Dina, it's a chilly one out there -...

    Wrap up well Dina, it's a chilly one out there - enjoy!!
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    Hi Judy, I feared answers to your query may...

    Hi Judy,

    I feared answers to your query may get lost in this thread, so I answered you on this thread of yours - please forgive me taking liberties !!!

    Click here

    Love Ellie.
  20. Thread: Jude

    by Ellie
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    Hi Judy, Start by contacting your OT who...

    Hi Judy,

    Start by contacting your OT who should assess your needs and your issues.

    If your arms have enough strength in them, you can get bed rails or bars which you grab to help you turn on...
  21. Thread: Jude

    by Ellie
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    Judy needs advice on hip pain in bed.

    Judy, forgive me for posting your post in another thread but I fear it may get lost in chat about soggy crisps flavoured with out-of-date spices!!!

    Love Ellie.
  22. Thread: Frieda

    by Ellie
    Replies
    23
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    851

    Hi Frieda, If you do restart, make sure you're...

    Hi Frieda,

    If you do restart, make sure you're not taking it on an empty tummy - taking Baclofen with food, or even a milky drink, should lessen nausea.

    No harm taking 5mg for the first 3...
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    With you on that one Debbie - Pringles would...

    With you on that one Debbie - Pringles would barely last 3 minutes in our house, let alone 3 days.

    Barry is obviously a man of great restraint and he said he likes soggy crisps, so any that...
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    MR BARRY !!! Are they in front of you right now...

    MR BARRY !!! Are they in front of you right now ??? It's before your dinner :D

    You're all teasing me now... I am in respite with nobody to feed me crisps :(:(:(

    Love Ellie.
  25. Thread: Frieda

    by Ellie
    Replies
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    851

    Frieda, there is nothing wrong with reading all...

    Frieda, there is nothing wrong with reading all about the meds you're putting into your body !!

    I think it's wise to do that - start slowly and increase dose after 3 or so days. The...
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