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Thread: ALS- MND ongoing

  1. #11
    Forum Member nunhead_man's Avatar
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    Good evening Jon and welcome

    Given you can build a Trident warhead and an Airbus 350, whom are you proposing to deliver the warhead to? :-)

    Seriously, if I need somebody advise me on my progression et cetera et cetera I know who ask first!

    By the way all I think I mentioned elsewhere that I had a weird feeling in my back and I wasn't sure if this was another MND thing but the current thinking is that I have got some sort of one-sided urinary tract infection so I'm taking antibiotics with my riluzole at the moment.
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  2. #12
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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

  3. #13
    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 21:04.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  4. #14
    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 22:39.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  5. #15
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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

  6. #16
    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

  7. #17
    Forum Member
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    Hi Ellie,
    I set up my Nippy in the same way:
    IPAP 12
    EPAP 4
    Ti 1.2 seconds
    backup 10 rpm
    great - thanks

    RR14
    Tidal volume 450mL

    I will get an exhalation valve one day ��������

  8. #18
    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.

  9. #19
    Forum Member
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    Breas will sell me 10 !!!

  10. #20
    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 22:01.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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