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  1. Replies
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    Hi Chas Have you tried sleeping in a more...

    Hi Chas

    Have you tried sleeping in a more upright position? By that I mean sitting propped up by pillows. That may help. Good luck!
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    Hi Barry I hope you didnít put yourself in...

    Hi Barry

    I hope you didnít put yourself in danger getting to and from the meeting. And itís good news indeed about being chosen as the charity of the year by the council leader.
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    Thanks, Debbie. Don’t worry about the red wine...

    Thanks, Debbie.

    Don’t worry about the red wine - it’s supposed to be good for warding off heart attacks - and you need the chips as you have to maintain your body weight. So, actually, it was very...
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    We were due to go shopping today but it didn't...

    We were due to go shopping today but it didn't happen.
  5. Replies
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    12,081

    Thank you for posting the link, Barry. It just...

    Thank you for posting the link, Barry. It just goes to show that MND can hit anyone, regardless of age or state of health.

    By the way, today's good thing has yet to find its way out from among the...
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    I'm in the mood for a bit of music this...

    I'm in the mood for a bit of music this afternoon:

    https://www.youtube.com/watch?v=wBciual7Ww4
  7. Thread: Help needed

    by Gillette
    Replies
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    947

    Hi anxious1, Please don't feel guilty or...

    Hi anxious1,

    Please don't feel guilty or worried about posting on the forum. Yes, we know about this bl**dy disease and many of us do have it, but I hope we are not blind or deaf to the suffering...
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    Hi Sheila I had sedation for the procedure so...

    Hi Sheila

    I had sedation for the procedure so there wasnít any pain or discomfort at all. When the tube was pulled down my throat I knew it was going down but there definitely wasnít any...
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    Hi Sarah and Sheila Good luck for next week. I...

    Hi Sarah and Sheila

    Good luck for next week. I found actually having the PEG fitted was much easier than I had anticipated. Having it in place takes the pressure off me for eating and makes it...
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    Hi Ellie It sounds wonderful. I could do with...

    Hi Ellie

    It sounds wonderful. I could do with one myself.

    Lynne, I've been really cold since I came home from hospital. Our heating is on high all day long.
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    Hi Andy Is sleep apnoea a symptom of MND? I...

    Hi Andy

    Is sleep apnoea a symptom of MND? I donít know. I know that weakness of the muscles for breathing is, which was why I mentioned it.
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    Hi Sheila, whereabouts in Somerset are you? I...

    Hi Sheila, whereabouts in Somerset are you? I lived in Wellington and then Chard before moving up to Greater Manchester.
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    Thank you for posting the link, Doug. It was...

    Thank you for posting the link, Doug. It was interesting to hear her explaining why itís important to use mice in research.
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    Hi Julie and welcome to the forum that no-one...

    Hi Julie and welcome to the forum that no-one wants to need.

    Yes, MND is a horribly isolating disease, partly because it is rare, but also because everyoneís MND journey is different. I certainly...
  15. Replies
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    5,543

    Hi Sheila, Iím afraid I donít understand what...

    Hi Sheila,

    Iím afraid I donít understand what you mean by Ďjerkí.

    The Nippy is used when your chest muscles have lost some of their strength and your lungs are no longer able to expel enough...
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    Well, my carers spend a lot of time shaking my...

    Well, my carers spend a lot of time shaking my hips to get me in the right position and it has been said that my hips move better than Shakira’s! (Well, someone could have said it. ;) )
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    My carers and I have been having a laugh this...

    My carers and I have been having a laugh this afternoon while they were trying get me straight in bed. Weíve decided that this is our theme tune:

    https://www.youtube.com/watch?v=DUT5rEU6pqM
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    And Andy, my toys have not just been thrown out...

    And Andy, my toys have not just been thrown out of my pram but directly at *you* as you have scored a direct hit on my Achilles heel. I am unbelievably touchy about people getting my name wrong. (Iím...
  19. Thread: What Now?

    by Gillette
    Replies
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    2,854

    Chrissie, I am so glad that your therapist is...

    Chrissie, I am so glad that your therapist is taking some constructive steps to help you and your Gran.

    Absolutely no need to apologise for venting. We are all here because of MND - we seek help,...
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    Hi Chrissie Yes, mine is powered: itís the...

    Hi Chrissie

    Yes, mine is powered: itís the Salsa Mini 2. Iím beginning to find it difficult to drive it so am going to ring the Posture and Mobility Service (the Wheelchair Team) who provided it,...
  21. Thread: What Now?

    by Gillette
    Replies
    58
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    2,854

    Broostine, you may have cracked but I am talking...

    Broostine, you may have cracked but I am talking about a complete breakdown, which is where you are headed. If your Gran wonít give you a break you really must just take one: decide youíre not going...
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    Hi Chrissie Oh no, what an awful...

    Hi Chrissie

    Oh no, what an awful disappointment! I canít imagine why it should have taken so long to get a wheelchair.

    Have you thought of ringing MND Connect to ask for advice?

    Itís not at...
  23. Thread: What Now?

    by Gillette
    Replies
    58
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    2,854

    Hi Chrissie I apologise for jumping in on...

    Hi Chrissie

    I apologise for jumping in on this thread but, having read through it, I am very concerned about your wellbeing. I really do understand that you want the best for your Gran *but* you...
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    Hi Andy Itís good to hear you are being...

    Hi Andy

    Itís good to hear you are being sensible. With MND being stoic is not a good option - it tends to come back and bite you on the bottom!
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    Andy, when you were fitted with your mask did...

    Andy, when you were fitted with your mask did they try a wide selection with you? They should be able to offer you many different masks to try.
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