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Thread: My Mum was diagnosed in November with lower limb onset

  1. #1
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    My Mum was diagnosed in November with lower limb onset

    Hello,

    My name is Katherine. My Mum was diagnosed in November last year , she had symptoms for 2 years before her diagnosis. Over the past month her symptoms are progressing far more quickly than I had anticipated. My Mum is 57 and she has been so brave. I have noticed recently that the muscles in her face are affected around the jaw area. Does this mean that my Mum will have problems with swallowing and talking soon?

  2. #2
    Forum Member Gillette's Avatar
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    Hi Katherine,

    Welcome to the forum but I'm sorry that you need it because of your Mum's diagnosis. You have come to the right place to ask questions as there is a lot of knowledge and experience on here.

    I was also diagnosed in November and don't really know much about MND. However, I'm sure you'll soon hear from some of the other members.

    Best wishes to you and your Mum.
    Dina


    Trying to keep positive, but not always managing.

  3. #3
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    Hi Katherine, and welcome. I was diagnosed in January, but had symptoms for about 2 years. Mine started in my hands, then my voice started to go slurry. Now my legs have been affected. You said your mum had problems with her jaw. I don't know if it is mnd related. But I also have pain in my jaw sometimes. I don't know much about mnd either, but my nurse said everyone is different. I am sure you will find plenty of advice on here.
    Best wishes
    Sheila.

  4. #4
    Forum Member Barry52's Avatar
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    Hi Katherine and welcome to the forum.

    I’m sorry to hear about your mother and you might suggest she looks into our very friendly group. We can’t offer advice about what may develop as everyone progresses differently. There are some typical symptoms but over different time scales.

    What I can suggest is maybe your mum can record her voice. A number of our members have done this and if you search voice recording on the forum you will find examples.

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

  5. #5
    Forum Member Terry's Avatar
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    Hi Katherine and welcome to the forum,

    I think that the swallowing action and muscles are different to the jaw ones. Although she might have some difficulty in chewing things. Best get her speech therapist to check her swallow etc.

    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.

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    welcome Katherine x

  7. #7
    Forum Member Lynne K's Avatar
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    Hi Katherine and welcome to our forums.
    I see that you have already had good advice. I too suggest taking to a speach therapist about your mum's swallow and about voice banking. Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  8. #8
    Forum Member nunhead_man's Avatar
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    Good afternoon Katherine

    Welcome to the forum - I hope we can offer you some help with your mother's support and noted it took 2 years to diagnose.

    Quote Originally Posted by KJ1 View Post
    I have noticed recently that the muscles in her face are affected around the jaw area. Does this mean that my Mum will have problems with swallowing and talking soon?
    I note nobody has answer this question for you and hope that somebody can although perhaps it is something you should ask the neurologist that is looking after your mum?

    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  9. #9
    Forum Member Ellie's Avatar
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    Hi Katherine and welcome to the Forum.

    I'm sorry for your mum's diagnosis.

    Unfortunately there is no simple answer to your question... Just because muscles in a specific area are affected, it doesn't automatically mean that adjacent or nearby groups of muscles are next affected.

    As Terry said, if mum's jaw muscles are failing, chewing may be more difficult so she needs to see an SLT, as others have said, to see if she needs to change what or how she eats. This is different to having swallowing difficulties, but if she can't chew food effectively into easy to swallow sized bites, that may cause problems. Obviously this is not happening at this stage?

    Is she getting an underbite from weakened jaw muscles, or sore teeth, from the lower teeth/jaw moving forward?

    An early signs there's a swallow issue is often a slight cough after drinking or eating and, for speech, a slight slurring of words.

    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.

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