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  • Jo jo
    replied
    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 won’t pay it.

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  • Ellie
    replied
    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.

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  • Jo jo
    replied
    Hi everyone hope everyone is coping as best they can. My partner is now using a wheel chair and is loosing strength in his right arm and hand. His neurologist won’t say what MND he has als or pls . There seems to be a massive difference in prognosis. He’s still working but has reduced to part time and I’m working full time but it’s getting so hard to juggle everything and I feel guilty for leaving him at home on his days off. I also find myself getting moody due to being emotionally and physically exhausted. Then feel guilty as I know he must be going through worse than me. If he’s only got months I want to pack in working and spend time with him then worry about the mortgage and bills but if hopefully he’s going to be with me for 10 years plus then I know I have to continue to work for as long as possible. At what stage will they give me some Idea of what is the likely future or don’t they ever tell you.

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  • Ellie
    replied
    Hi Jo Jo,

    If it's not viral, your partner should see an SLT - Speech & Language Therapist - either through the MND Clinic or in the Community re voice changes and voice banking.

    The tickle could be swallow, saliva or reflux related and should be assessed.

    Love Ellie.

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  • Jo jo
    replied
    He had a flying visit from the OT but she said she will come and see him again on the 7th. I will ask her who else should be involved and when they might come and see him. Just got back from the doctors he says it might just be a virus and have given him antibiotics. Fingers crossed that is all it is.

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  • nunhead_man
    replied
    Hi Jo jo

    Originally posted by Jo jo View Post
    How does he bank his voice
    This is quite a good read I think

    https://www.mndassociation.org/profe...voice-banking/

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  • Kayleigh
    replied
    Hello Jo Jo

    I remember your partner was due to have his first appointment with an OT before Christmas. I hope all went well at the appointment.

    Hopefully he will also be seen by other healthcare professionals (including a speech & language therapist who should be able to assess whether MND is affecting your partner's speech and also provide advice and infomation about speech therapy and voice banking etc).

    There is also some information about speech and communication (including voice banking) on the MNDA's website:-

    http://https://www.mndassociation.org/support-and-information/living-with-mnd/speech-and-communication/

    Love
    Kayleigh

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  • Jo jo
    replied
    How does he bank his voice

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  • Barry52
    replied
    Hi Jo Jo,

    It is quite common with MND to experience speech problems. I find that because one of the symptoms is over production of saliva and mucus that clearing my throat is a constant issue. There are medications to dry up saliva but this can lead to other problems. I find pineapple juice clears mucus which is often worse in the morning. Has your partner considered voice banking?

    Best wishes,
    Barry

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  • Jo jo
    replied
    My partner has started to have a groof voice is this part of his MND he also says he has a tickley cough. I hate MND.

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  • Streetwise
    replied
    if you know your husbands profession find out if the charity connected to it can help you, if they can ask them for equipment ,advice on other areas we got a lot of help from our charity instead of waiting for the nhs or social !services! or neighbours!glad you get support here, i had none just left to struggle ,had none since , I check in here once in a blue moon for reasons .

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  • Jude11
    replied
    Hi Jo
    Get one asap as mine took 6 months to be fitted and by then couldn't walk anyway so no good.

    Good luck
    Judy x

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  • Lynne K
    replied
    I've got two of those braces, one that was given to me by the NHS and one that I bought. I didn't use them much because the right one hurt my arthritic ankle. They are great though if you don't have sore ankles already. Lynne

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  • Jo jo
    replied
    That looks like something that would really help Doug Thankyou

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  • Doug Carpenter
    replied
    Foot drop

    Hi Jo jo

    My MND started with foot drop. I was given an Orliman Boxia orthotic:

    https://www.orliman.com/en/product/c...t-ankle-brace/

    It’s still a very helpful piece of safety equipment to use with a walker as well as crutches.

    Doug

    Leave a comment:

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