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Type: Posts; User: Terry

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  1. Thread: Pain/Agony

    by Terry
    Replies
    35
    Views
    1,352

    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,...
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    10,550

    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" ,...
  3. Thread: Pain/Agony

    by Terry
    Replies
    35
    Views
    1,352

    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...
  4. Thread: Worried

    by Terry
    Replies
    6
    Views
    264

    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
  5. Replies
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    749

    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...
  6. Thread: Pain/Agony

    by Terry
    Replies
    35
    Views
    1,352

    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...
  7. Thread: Rch4

    by Terry
    Replies
    281
    Views
    76,481

    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...
  8. Replies
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    749

    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...
  9. Replies
    76
    Views
    9,729

    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
  10. Replies
    21
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    532

    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...
  11. Thread: Ventilation

    by Terry
    Replies
    90
    Views
    6,356

    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
  12. Replies
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    1,777

    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...
  13. Replies
    12
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    749

    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...
  14. Replies
    21
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    532

    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...
  15. Replies
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    328

    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. ...
  16. Replies
    21
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    532

    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...
  17. Thread: Ventilation

    by Terry
    Replies
    90
    Views
    6,356

    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...
  18. Replies
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    932

    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...
  19. Replies
    11
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    1,121

    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
  20. Thread: Quick Hello

    by Terry
    Replies
    9
    Views
    693

    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...
  21. Thread: Muscle spasms

    by Terry
    Replies
    13
    Views
    937

    Hi Panniertank, The blood clot could be to a...

    Hi Panniertank,

    The blood clot could be to a bit of both. I don't think that that many Mnd people have them but we are more at risk.

    Probably you can get hospital transport to that...
  22. Thread: Good news

    by Terry
    Replies
    111
    Views
    6,895

    Hi Lynne; Don't worry about offending me, I...

    Hi Lynne;

    Don't worry about offending me, I will always PM you if I think something is wrong before I bite your head off. LOL

    The wheelchair that I normally use has the big wheels at the front...
  23. Thread: Good news

    by Terry
    Replies
    111
    Views
    6,895

    A word of extreme caution, everyone, Don't...

    A word of extreme caution, everyone,

    Don't concider going down drops of more than two inches unless you have been showed how to by wheelchair services in that specific wheelchair. Mine would...
  24. Thread: Muscle spasms

    by Terry
    Replies
    13
    Views
    937

    Hi Panniertank, Sorry to hear about your...

    Hi Panniertank,

    Sorry to hear about your cramps, they are so painful. As Lynne says, many of us get them in bed which is great fun. I found quinine helped but I only took it when I had trouble...
  25. Thread: .MND Symptom

    by Terry
    Replies
    10
    Views
    2,165

    Hi Lily, Yes, shame you didn't mention your...

    Hi Lily,

    Yes, shame you didn't mention your floating limbs, I have never heard of that before and maybe Google it. Always right a list of things that you want to say or ask when you see a doctor...
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