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Thread: ALS- MND ongoing

  1. #11
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    Kayliegh -
    My wife got the bed and wheelchair after much fighting - she said exactly the same thing��

    luv from me x x

  2. #12
    Forum Member Kayleigh's Avatar
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    Hi jonboy,

    Is it a manual wheelchair or were they 'generous' enough to supply you with the electric variety? - I only ask because we are supposed to be supplied with an electric wheelchair once 'they' have deemed us to be 'worthy' of one

    (As you can probably tell, my experience of 'wheelchair services' could be better - but I expect this is something that varies according to where you live - as is the case with many different services, probably a 'postcode lottery')

    Best wishes to you and your wife,

    Kayleigh x
    Last edited by Kayleigh; 8th January 2019 at 20:04.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  3. #13
    Forum Member Ellie's Avatar
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    Hi Jon,

    You don't have to "figure things out" yourself, or at least you shouldn't have to!

    You might find using the Nippy in Pressure Support mode is better, as it reduces the effort on your muscles during both breathing phases, augmenting gas exchange.

    The biphasic settings are recommended in ALS - an IPAP for inspiration and an EPAP for expiration - saving your respiratory muscles extra effort (that's ts aim after all!) Other factors to consider are spontaneous breathing and trigger breaths.

    My initial settings were IPAP 10 & EPAP 4, but I was a long way off FVC of 100%.

    IPPV = Intermittent positive pressure ventilation, is a standard, controlled mode of ventilation (does not require any spontaneous respiratory effort from the user), and is not synchronised with user's respiratory effort.

    I am more than willing to help you if you want help.

    Love Ellie.
    Last edited by Ellie; 8th January 2019 at 21:39.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #14
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    Hi Jon, welcome to the forum.

    You sound really knowledgeable and pro active. A good positive attitude is really important and I find it helps me when I have control over any decisions.

    There is expert practical and emotional support on this forum and always someone to answer a question.

    However, it is worrying that you have to work some things out for yourself and fight for the equipment you need to be safe and comfortable.

    Take Care and keep posting.
    Love Debbie

  5. #15
    Forum Member Terry's Avatar
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    Hi Jon;

    I have emailed Mnda Connect direct putting down what you said in your first 2 posts and suggest that you do the same as the way you have been treated is disgraceful.

    You should not be paying or having to try to set things up like that.

    Also I would get your doctor to refer you to your nearest hospice as they have their own specialists and normally help us in so many ways. You can refer yourself there as well, it's well worth it.

    Love Terry

  6. #16
    Forum Member Ellie's Avatar
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    You've room to play with on the settings Jon, esp on Ti and Back-up, if you find you need to fine tune them. I'm sure you'll find your optimal settings.

    Best wishes,
    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #17
    Forum Member Kayleigh's Avatar
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    Good news Jonboy - but I jolly well hope you get a discount for a bulk purchase! - if you don't need them all, there is always e-bay!
    Last edited by Kayleigh; 10th January 2019 at 21:01.
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  8. #18
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    thats exactly what I will do

  9. #19
    Forum Member Kayleigh's Avatar
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    Good old e-bay. I hope all goes well for you.
    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 10th January 2019 at 22:32.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  10. #20
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    I was whisked off to a Hospice so unable to finish my NIV research for a while. I have a Talley active matress hereand sitting around here has cleared up the lymphodema in both feet already. I wish I wasat home with mywife though. I started criticising the NHS for poor treatment of ALSers, so they suggested seeing the trick cyclist. pfft

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