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  1. Thread: Duty of care?

    by Terry
    Replies
    21
    Views
    759

    Hi Dina, I am sorry to hear that you are back...

    Hi Dina,

    I am sorry to hear that you are back there but hopefully your husband can recop and they will sort out a proper care package before you go home.

    Best wishes, Terry
  2. Replies
    5
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    531

    Hi Wailywoo, I listen to talking books to get...

    Hi Wailywoo,

    I listen to talking books to get my brain away from thinking in bed, I soon drift off.

    I don't think there is any harm in taking a sleeping tablet from time to time.

    Love Terry
  3. Replies
    6
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    2,539

    Hi Dingaling, I don't know much about personal...

    Hi Dingaling,

    I don't know much about personal assistants and such like. Maybe the Mnda Connect can help you or others can.

    Love Terry
  4. Thread: Pain/Agony

    by Terry
    Replies
    48
    Views
    2,443

    Hi Christine, It doesn't take us long to...

    Hi Christine,

    It doesn't take us long to forget how to use legs, because even after nine years I think that they move like a normal person's does, automatic reset.

    Can't see how feeding tubes...
  5. Thread: collection

    by Terry
    Replies
    9
    Views
    467

    Hi Shrew; Thankyou for collecting and having...

    Hi Shrew;

    Thankyou for collecting and having further plans for raising for the Mnda in Mick's name.

    I'm pleased that your daughters are helping support you on your trip to Worceseter.

    Love...
  6. Thread: Pain/Agony

    by Terry
    Replies
    48
    Views
    2,443

    Hi Devonmaid; Sorry to hear of Tony's chest...

    Hi Devonmaid;

    Sorry to hear of Tony's chest infection and hope that is under control now so his more comfortable.

    Most of us experience bad pains at times, muscles, joints, teeth, wind,...
  7. Replies
    21
    Views
    10,918

    Hi Ellie; So pleased that you've sorted your...

    Hi Ellie;

    So pleased that you've sorted your head out, itchy scalp issues are awful as well. I don't get any trouble there, no sense, no feeling.

    I am using a Nappy car ointment "Bepanthen" ,...
  8. Thread: Pain/Agony

    by Terry
    Replies
    48
    Views
    2,443

    Hi Christine, You are between a rock and hard...

    Hi Christine,

    You are between a rock and hard place. Life is hard enough with Mnd if you accept all the equipment and communication devices but if you don't then you end up not being able to...
  9. Thread: Worried

    by Terry
    Replies
    6
    Views
    346

    Hi Ron, Sorry to hear of your problems and...

    Hi Ron,

    Sorry to hear of your problems and worries but it certainly doesn't sound like Mnd to me.

    Best wishes and tell us what it is when you find out.

    Love Terry
  10. Replies
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    984

    Hi, A couple of comments on the video. ...

    Hi,

    A couple of comments on the video.

    Bags of 250 ml would not be much use to me and I suspect most people, bladders hold 400 ml.

    The condom thingy goes on and comes off a lot easier than...
  11. Thread: Pain/Agony

    by Terry
    Replies
    48
    Views
    2,443

    Hi Christine; Sorry to hear of your Gran being...

    Hi Christine;

    Sorry to hear of your Gran being in so much pain and I hope she's more comfortable now. Mnd is not normally painful apart from cramps but it does make us vonrable to side issues...
  12. Thread: Rch4

    by Terry
    Replies
    282
    Views
    76,705

    Hi Sportingmac; I try to stay off this thread...

    Hi Sportingmac;

    I try to stay off this thread because I don't know much about it.



    Not quite sure what a Nay-sayer is so I can't comment on that. I don't like people putting labels on...
  13. Replies
    12
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    984

    Hi vicky and Barry, It's not quite as simple...

    Hi vicky and Barry,

    It's not quite as simple as that, Barry.

    As well as the condom thingy which comes in different sizes, you need a bag which also comes in different capacities. These bags...
  14. Replies
    76
    Views
    9,954

    Hi Panniertank and Scotty, It's just one of...

    Hi Panniertank and Scotty,

    It's just one of the normal tests that most of us have to eliminate other things. They don't give you a diagnosis of Mnd without being pretty certain.

    Love Terry
  15. Replies
    21
    Views
    641

    Hi Puddy, It has lots of unpleasant things and...

    Hi Puddy,

    It has lots of unpleasant things and can make you feel funny, light headed and sick. This is just my opinion but I strongly believe that many of the people that have problems with it is...
  16. Thread: Ventilation

    by Terry
    Replies
    90
    Views
    6,656

    Hi Dina, Sometimes you can put the mattress...

    Hi Dina,

    Sometimes you can put the mattress air pump on the floor or on a stall to reduce any noise and vibration. Do make sure that it can't fall down.

    Just a idea.

    Love Terry
  17. Replies
    13
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    1,838

    Hi vicky, Technology can be a big problem if...

    Hi vicky,

    Technology can be a big problem if there's no one to help and deal with the odd issue.

    It is a shame that he doesn't go to the hospice as they would help with this, wheelchair and...
  18. Replies
    12
    Views
    984

    Hi vicky, I think that Sue's idea of starting...

    Hi vicky,

    I think that Sue's idea of starting with smaller trips is good.

    Like her Steve,, I also wear a convene when I have long car trips and they were supplied by the convene nurse, it...
  19. Replies
    21
    Views
    641

    Hi Billy, I can understand people not taking...

    Hi Billy,

    I can understand people not taking riluzole for a couple of reasons but the vast majority of us do and don't have any perceived problems.

    It's very important that they don't start to...
  20. Replies
    6
    Views
    388

    Hi Polly; Sounds like your physio is now going...

    Hi Polly;

    Sounds like your physio is now going to supply one. If not his OT should give you needed equipment because a damaged you would mean that a lot more expensive equipment would be needed. ...
  21. Replies
    21
    Views
    641

    Hi Andy; That was always my impression but a...

    Hi Andy;

    That was always my impression but a trail on Mnd people after 10 years would be very hard to get any worthwhile statistics.

    A cure would be great but I'm surprised that after 20...
  22. Thread: Ventilation

    by Terry
    Replies
    90
    Views
    6,656

    Hi Dina; Sorry to hear nothing has worked out...

    Hi Dina;

    Sorry to hear nothing has worked out for you. I guess you let them know of your frustration and anger.

    Do try to involve the Mnda and your specialist team in helping get things...
  23. Replies
    13
    Views
    1,007

    Hi Hayls, Great advice from others. Like...

    Hi Hayls,

    Great advice from others. Like Kayleigh, I get a few people in front of me a couple of feet away so that people can't see me directly. They give me plenty of tissues and reassure...
  24. Replies
    11
    Views
    1,192

    Hi Gemma, Have you checked with your OT and...

    Hi Gemma,

    Have you checked with your OT and hand therapy at the hospital.

    Love Terry
  25. Thread: Quick Hello

    by Terry
    Replies
    9
    Views
    739

    Hi Standardbeatz and welcome to the forum, ...

    Hi Standardbeatz and welcome to the forum,

    It's really hard to come terms with the diagnosis and may take a while.

    Please feel free to ask any questions or share things with us.

    Best...
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