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  1. #1
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    First visit

    My husband was given the diagnosis almost 3 weeks ago. It came as a complete shock as the most likely cause of his slurred speech was myasthenia gravis. His way of dealing with it at the moment is by not talking or thinking about it too much. Unfortunately, I know far more about it, and am finding it very hard. Itís very early days and Iím trying not to look too far ahead.

    I have found the MND Association website very informative, but have only just discovered the forum. I am sure I will find it really helpful to communicate with people going through similar experiences.

  2. #2
    Forum Member Barry52's Avatar
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    Hello Polly and welcome.

    If the primary symptom is slurred speech in your husband then he may have the primary lateral sclerosis form of MND which is slow progression. This is how it started with me 7 years ago. I must point out that most neurologists arrive at this diagnosis after monitoring progression over a few years and I am not qualified to confirm this. I only hope to give you some hope in what must be troubling you both.

    You will find many of our forum family eager to help with support and advice on your journey ahead.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  3. #3
    Forum Member Kayleigh's Avatar
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    Good afternoon Polly,

    A warm welcome to the forum. The diagnosis is usually a big shock and there is a lot to come to terms with - but there is a lot of support available for everyone affected by MND.

    I have found a lot of support from the very friendly people on this forum and also from the MNDA.

    You might have already noticed that the MNDA main website is being updated today - but there should be information on there about local support that is available for you and your husband. The MNDA have local branch meetings that are usually held approximately every month. You will also be able to get support and advice from your local MND Regional Care Development Adviser.

    The people on the MND Connect helpline are very friendly and knowledgable and so please don't hesitate to phone them if you would like someone to talk things through with. They can also ask your local Adviser to contact you or your husband, if you would like them to.

    You are very welcome join in on this forum and ask for advice, as often as you would like to.

    Love Kayleigh x
    Last edited by Kayleigh; 14th May 2019 at 16:09.

  4. #4
    Forum Member nunhead_man's Avatar
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    Good afternoon Polly,

    A warm welcome from me to the forum.

    Being told you have MND is usually a big shock and there is a lot to come to terms with - but there is a lot of support available for everyone affected here and elsewhere.

    Speaking for South London branch we do not bring people together monthly but bimonthly, and that for coffee, cake, networking and information at one or other of our local hospices (Trinity, Clapham, St Christopher's Sydenham). If you are in South London come and be welcome.

    Warmly

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  5. #5
    Forum Member Ellie's Avatar
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    Hi Polly,

    Sorry you find yourself needing the Forum but a warm welcome to you and to your husband.

    It will take time to get your heads around the diagnosis and we all cope differently with the news.

    Did your husband have the EMG tests and its results, along with his clinical exam, lead to his MND diagnosis?

    Or, as Barry alluded to, was the diagnosis arrived at by another means?

    It's very early days but hopefully you'll find this Forum a useful and supportive resource.

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

  6. #6
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    Thank you Barry, Kayleigh and Ellie. The diagnosis is bulbar onset MND and yes, he had EMG tests.

    At the moment we are being referred back to our local health authority for ongoing care, which I hope will make things easier. Last week he had an enormous amount of ‘hard sell’ to have a PEG fitted. I know it will be needed in the future, but this pressure so soon after diagnosis was very difficult for him.

  7. #7
    Forum Member Ellie's Avatar
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    Yes indeed Polly - he and you both need time to process the life changing diagnosis before thinking about a feeding tube.

    Gentle advice though: if the professionals raised the issue, albeit a bit aggressively by the sounds of it, he should start thinking about it when he feels he can do so without undue pressure. For now, just focus on yourselves.

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

  8. #8
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    Hi Polly,

    A warm welcome to the forum but I am so very sorry for your husband's diagnosis. It is a huge and devastating shock for you both and also for your family.

    I guess we all cope in different ways. When I was diagnosed I found all the sensitive and very well meant advice and support from professionals totally overwhelming. However, other people would possibly welcome it. I needed time to come to terms with things first and once my husband and I had told our close family we were fortunate enough to have a holiday where we could talk about our options. It was then I could accept practical help and adaptions.

    Take Care of each other in these early days,
    Love Debbie x

  9. #9
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    Ellie, I know what you are saying so tactfully! This type of MND develops more quickly. You are right though, a gentler approach would have helped.

  10. #10
    Forum Member Gillette's Avatar
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    Hi Polly,

    Welcome to the forum. As you will have seen, it is a friendly and supportive place to be. It took me a few months to get enough courage to even look at the MNDA website, let alone find out anything about the disease. For those few months I had ostrich syndrome - I kept my head very firmly buried in the sand.

    An MND diagnosis is really scary, however there is a lot of information on the MNDA website if you want to find out anything about MND. I have found some of the booklets very useful, particularly:

    http://https://www.mndassociation.or...-care-NICE.pdf

    http://https://www.mndassociation.or...ive.pdf?7d15ee

    http://https://www.mndassociation.or...ack.pdf?7d15ee

    Don't forget to take care of yourself, Polly.
    Dina


    Trying to keep positive, but not always managing.

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