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  1. #51
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
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    3,083
    Hi Jo Jo,

    I'm sorry you're chasing your tail and understand how you are exhausted.

    Tbh, I don't understand why your partner's Neurologist refuses to elaborate as to which form of MND he has, unless your partner himself doesn't want to know??

    OK if the diagnosis is not easily categorised, but the Neuro should still be able to say, "well it's mainly XYZ", or the likes which will give you both some direction of travel (for now, at least) Sometimes a person may have predominantly upper motor neuron involvement (slower form of MND) but it can gradually morph into ALS.

    As has been often said, giving a prognosis to a relatively well person with ALS is very, very difficult - really it's a guesstimate or giving 'averages' in survival rates.

    Hopefully the Neuro will tell your partner his diagnosis without him needing to go through the palaver of getting access to his medical records!

    Is your employer understanding? I don't suppose your partner has Critical Illness Cover or a Life Insurance policy with a terminal illness clause covering MND diagnosis or able to access a pension which could help pay off the mortgage?

    Take care.

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

  2. #52
    Forum Member
    Join Date
    Oct 2019
    Posts
    23
    We do have terminal illness cover but you have to have 12 months or less to live to be able to claim it and due to the neurologist saying it could be months but could be years they wonít pay it.

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