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Thread: Hello, I'm a new member

  1. #1
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    Hello, I'm a new member

    Hello, my husband was diagnosed with MND 3 weeks ago. He is 76, and we think/hope/pray that a) he was diagnosed very early, and b) he might be on the slow-evolving side of statistics.
    That is our assessment now, after the initial shock which was rather awful. He's had symptoms for less than a year, pains in his thighs muscles mainly, and keeps going on the treadmill at the gym 3 times a week. He monitors his activity carefully, and makes sure that he doesn't push himself too hard. Admittedly, he fell yesterday.
    As we're still waiting for the referral to the neurological hospital, I'd be interested in the opinions of those more knowledgeable than us: when the start is slow, will it keep on being slow to develop ? In other words, do we have 10 years rather than 3?
    Thank you for your patience and support.
    Catherine

  2. #2
    Forum Member Terry's Avatar
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    Hi Catherine and welcome to the forum,

    Sorry to hear about your husband's recent diagnosis.

    I think that the best way of having a chance of living longer is to keep well narished and moving but not over doing anything. Not all of us can do much for long. Get plenty of rest when needed. Accept any equipment etc that is offered.

    Please feel free to ask any questions or share things with us.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Catherine and welcome to the Forum.

    Sorry to hear of your husband's MND diagnosis.

    It's impossible to answer your prognosis question, I'm sorry to say.

    But.... from how you've described your husband's symptoms, he appears not to have much (any??) clinical weakness, which is good. You say his leg muscles were sore, perhaps from spasm, but he can still do regular treadmill sessions - another good sign one year on.

    Has he any other symptoms?

    Did he have an EMG test, do you know?

    I'm sure the MND specialist will be able to give him a more detailed diagnosis, as in if it's both upper and lower motor neurons that are involved.

    In the meantime, as he's found out, MND affects our balance, so it is terribly important not to fall!! And yes, that probably will mean having to use mobility aids when it's the last thing he wants to do, but falls can be dangerous

    Has an OT assessed him? (OT = occupational therapist)

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

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    Thank you Terry and Ellie for your replies.

    Yes he's had an EMG as part of his assessment, and it revealed that he had denervation of the distal and proximal lower limbs, but also "denervatory changes" in the distal upper limbs and the mouth and thorax muscles.

    Since diagnosis, we haven't had any contact other than with his very good GP, and were indeed warned that it might take 3 months for the referral to transform into a consultation with the neurologist at Queens Hospital (London)!!

    Best wishes,
    Catherine

  5. #5
    Forum Member Terry's Avatar
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    Hi Catherine;

    Maybe get in-touch with your local Mnda group and see about any meetings. 3 Months is a long time to get a referral, especially if he has any problems.

    Love Terry

  6. #6
    Forum Member Barry52's Avatar
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    Hello Catherine and welcome to the forum.

    I’m sorry to hear that your husband has been diagnosed with MND but what you say about him suggests he may have a slower version of the disease. Falls can be one of our biggest dangers as we tend to avoid walking aids until we have a injury.

    The Royal London and Barts have a dedicated MND care team as does Kings so you may want a referral to those.

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

  7. #7
    Forum Member Ellie's Avatar
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    Assuming the EMG also showed reinnervation and chronic neurogenic changes, Catherine and your husband is not showing signs of wasting (atrophied) muscles, it would suggest that he has a slower form of MND. Hopefully he will continue to progress slowly.

    There are a few other Forum members who also attend Queen's - it's also an MND Care Centre with a multidisciplinary team.

    Best wishes to you both.

    Love Ellie.
    Last edited by Ellie; 14th October 2019 at 20:18.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
    Forum Member nunhead_man's Avatar
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    Hi Catherine

    Welcome!

    Quote Originally Posted by Catscho View Post
    when the start is slow, will it keep on being slow to develop ?
    Generally speaking, everybody's MND is their own and everyone is different, but the information I have is that once you start slow you carry on slow.

    The trouble is that everyone is a sample of one and so it is very difficult to know.

    If it helps, it is different to multiple sclerosis, which I know well from my father-in-law who died recently, where as you may know the damage occurs in fits and starts.

    I have had lots of help from here and I look forward to seeing you back when you need more as I am sure you will.

    Would your husband be joining us?
    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

  9. #9
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    Dear Catherine
    your husband's experience sounds similar to mine - I was diagnosed in June. I do hydrotherapy to keep muscles moving and chair pilates.. Am surprised you didn't mention that you have an MND nurse - or rare conditions nurse as mine is. they are very supportive and should come out and see you and discuss concerns and make referrals etc.. but perhaps that comes via the neurologist consultation.. but be assured they are very supportive and helpful. And I agree with someone's comment about joining local MND group - I've only been twice as it meets bi monthly, but it IS very supportive and positive... not what i expected. and you can share stories and things that help.. All the best..Eileen

  10. #10
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Scotty View Post
    Dear Catherine
    your husband's experience sounds similar to mine - I was diagnosed in June. I do hydrotherapy to keep muscles moving and chair pilates.. Am surprised you didn't mention that you have an MND nurse - or rare conditions nurse as mine is. they are very supportive and should come out and see you and discuss concerns and make referrals etc.. but perhaps that comes via the neurologist consultation.. but be assured they are very supportive and helpful. And I agree with someone's comment about joining local MND group - I've only been twice as it meets bi monthly, but it IS very supportive and positive... not what i expected. and you can share stories and things that help.. All the best..Eileen
    Hi Eileen,

    Unfortunately, not all MND nurses offer a visiting service - certainly not those at the Salford clinic. However, we can ring them and leave a message at any time which will return (although sometimes it takes a while).
    Dina

    Trying to keep positive, but not always managing.

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