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Thread: Louise 38 help after diagnosis

  1. #11
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Louise,

    Given Sean's progression and breathing issues, I think he should be re-evaluated by his MND Consultant, with an EMG test if necessary.
    Unfortunately that progression doesn't really fit with how PLS usually progresses.

    IF his diagnosis is changed, there should be more of an immediate response for help - should being the operative word!

    Re SNIP test: yes, 25 is a bit low, but if Sean had a stuffy nose or wasn't sitting upright, that would have skewed his result. It's good that his breathing is being assessed with a view to starting non-invasive ventilation (NIV) if it's needed.

    NIV use does not mean he's in the "final stage" but it does mean he'll have better quality breathing which, in turn, should give him more energy.

    Best wishes.

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

  2. #12
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Hello Louise,

    I am sorry to hear about Sean being unwell.

    It sounds like you are caring for Sean by yourself, and it is very disappointing to hear that carers are unable to help because you haven't been provided with a hoist yet. It is unfair that carers from agencies always have to use a hoist, when we are expected to manage without one (until one is eventually provided for us).

    Perhaps, if you have time, you could speak to Sean's OT or MND nurse about this issue, in case there is a way for you to be provided with a hoist quickly.

    If you havn't done so already, you may wish to get some support and advice from your local MND Regional Care Development Development Adviser. The Advisers are very friendly, kind and knowledgeable. For further info and their contact details, please click on the link below:-

    I hope that you and Sean receive more support and help from carers etc, very soon.

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 10th February 2019 at 16:53.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  3. #13
    Forum Member
    Join Date
    Jan 2019
    Sorry to hear of your daughter Jackie thatís so sad at such a young age !!
    Iím also caring for Sean with a little help from his mum we are trying to make the most of everything we can. I prey for a break through with this disease I have had a read of that new trail in Australia hopefully the phase2 trail will be as promising xxx

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