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Thread: First time

  1. #1
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    First time

    Hi
    First time on the forum. My Dad was recently diagnosed, but in the last 2 weeks the deterioration has been by rapid, catching us all off-guard. Typically,we're pretty resourceful as a family, but this has really hit hard and we are all a bit bewildered and the holidays haven't really helped as the people we need to talk to to make plans are also on holiday. Anyway, from tomorrow I guess it starts in earnest.
    Unfortunately he lives ovseas where the care is, at best, poor, and the doctors are not up to speed on more recent medical developments, especially when it comes to MND.
    My first concern is that he is short of breath and his pulmonologist advises he does not use oxygen yet as this creates a dependency which will weaken his lungs over time. Does anyone know of any other respiratory device that can assist his breathing that I can research and discuss with his doctors?

    Thanks

  2. #2
    Forum Member roy's Avatar
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    Hi Frasos,

    welcome but sorry you have had to find this site, I would recommend you make contact with the helpline from the main MND site there will be someone available to discuss some options on availble equipment.I AM aware of a Bi PAP machine, but as yet no need for myself.

    best wishes.

    Roy.

  3. #3
    Forum Member Rory's Avatar
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    Thames Ditton, Surrey
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    Hi
    I use the Nippy - same sort of machine Roy mentions- and it just forces air into the lungs so as not to let the lungs lose capacity. It has helped me get to sleep for over a year since my breathlessness started being a problem. It also clears out the carbon monoxide thus reliving headaches in the morning. Whilst I used the nippy once or twice during the day to recharge , i am using it much more now.
    This forum and the links will no doubt prove a valuable asset to you. Let's hope the local GP / staff educate themselves very quickly as to the best treatment for your dad.
    Best wishes

    Rory

  4. #4
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    Hi Frasos,

    I would recommend you make contact with the helpline from the main MND site there will be someone available to discuss some options on available equipment.

    Roy.
    Roy has the right idea in suggesting you contact the helpline, MND Connect, on 08457 626262 or you can email them at mndconnect@mndassociation.org. They are available to speak to Monday to Friday, from 9.00am to 5.00pm and 7.00pm to 10.30pm, and will happily advise you about all and any aspects of your father's illness, including guidance on the range of assisted breathing equipment that is available.

    You can also view complete details by clicking the 'MND Connect' tab at the top of this page.

    Best wishes with your researches,

    Mike.

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