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  1. Sarah, absolutely nothing wrong with having an...

    Sarah, absolutely nothing wrong with having an occasional duvet day 😀

    I am a great believer in using any aid which conserves my energy - although I fully understand why many people struggle...
  2. Thread: Frieda

    by Ellie
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    1,312

    Hope it goes well for you this time Frieda - ...

    Hope it goes well for you this time Frieda - good luck!
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    Jerry, Have you tried the specialist home swap...

    Jerry,

    Have you tried the specialist home swap websites too? For example HomeSwapper & Glassbob, to name just two.

    Hope you're doing as well as possible?

    Love Ellie.
  4. Hi Sarah, (MND Connect are off until Monday,...

    Hi Sarah,

    (MND Connect are off until Monday, so I'll give you my thoughts)

    I'm sorry you're feeling despondent, I don't blame you, you're at a very difficult stage of the disease :(

    I also...
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    Oh Miranda, that must have been very stressful...

    Oh Miranda, that must have been very stressful for you all. Glad to hear hubby is safely home in his own bed, hope his recovery goes well.

    Kudos to your boys.

    The first of many grocery...
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    Barbara, that's horrific treatment of your dad!...

    Barbara, that's horrific treatment of your dad!

    There are various different drive control options on a powerchair and the MNDA have special wheelchair specs with 3 manufacturers, all giving head...
  7. Oh Barbara, I am so sorry you're going through...

    Oh Barbara, I am so sorry you're going through all this - it must be very stressful for you all :(

    I guess your dad has lost control of so many area of his daily life and he is exerting control...
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    Twiching is VERY, VERY COMMON among the the...

    Twiching is VERY, VERY COMMON among the the general popoulation - it means nothing and is certainly not MND in the absence of clinical weakness and very abnormal EMG test results.

    Please realise...
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    Yes, kudos to you Barry for braving the roads. ...

    Yes, kudos to you Barry for braving the roads.

    Also, well done to the Chairman of Nottingham Council for choosing to support the MNDA as the charity for the year - 7k is a lot of money!

    Hope...
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    Hi TAPG, I am sorry you're so anxious. ...

    Hi TAPG,

    I am sorry you're so anxious. Anxiety is very debilitating and can take over your life - it is an illness in itself which needs treating.

    Your Neurologist was not able to reassure...
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    Hi Chas, Sorry to hear of your woes. There...

    Hi Chas,

    Sorry to hear of your woes.

    There are many ways to get a comfortable night's sleep, eliminating pain and breathing anxiety. Now for the questions :rolleyes:

    What's your bed set-up...
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    Great news re new cushion Debbie - hopefully...

    Great news re new cushion Debbie - hopefully your bottom and coccyx will love the relief!!

    Red wine & chips sounds indulgent :)

    Glad you'd a good day.

    Love Ellie.
  13. Thread: Frieda

    by Ellie
    Replies
    31
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    1,312

    Frieda, Do contact your OT / Physiotherapist...

    Frieda,

    Do contact your OT / Physiotherapist ASAP to assess you for an orthotic brace or support, which could improve your stability, making walking easier - for example, an ankle brace will...
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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.
  18. Thread: Frieda

    by Ellie
    Replies
    31
    Views
    1,312

    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....
  22. Thread: What Now?

    by Ellie
    Replies
    58
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    2,938

    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...
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