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Thread: Bulbar onset questions

  1. #1
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    Bulbar onset questions

    Hi everyone,
    My gran has been diagnosed in the past few days. She is 86. She has difficulty talking, slurs her words, she chokes easily and has the emotion thing where she cries involuntarily. So far her arms and legs are relatively strong.
    As you can imagine she is scared and confused about what is to come, especially since she has had no one come out to
    Her yet and let her ask the million questions that are racing through her mind, and us her family are feeling the same.
    There are two things in particular that are scaring her and thatís why Iím posting here, in the hope that someone can help me help put her mind at rest even a little.
    Will there be pain? Does it depend on the individual case because all are different? Or is there just pain normally?
    And will there be behavioural differences as with dementia, specifically aggression? She canít bear to think she would ever treat us badly and have no control over it.
    Sorry for the long post and thanks in advance for any help or advice.

  2. #2
    Forum Member Ellie's Avatar
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    Hi Jee & welcome.

    Sorry to hear about your Gran's diagnosis.

    There tends not to be a lot of pain with the disease and, when it does occur, it's often in the muscles around the joints which can be eased with good seating, moving joints and meds.

    If gran gets cramps or pain for whatever reason, there'll be meds to help her, but severe pain is not usually associated with an MND.

    She'll need some form of communication aid, which her Speech Therapist can help sort.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #3
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    Thanks so much for your reply Ellie.
    That’s one bit of reasonably good news I can give her.
    Just need to find out about the aggression part now.

  4. #4
    Forum Member Barry52's Avatar
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    Hi Jee,

    First of all I’m sorry to hear about your gran but pleased you are taking an interest in her welfare. Statistics show that a very small percentage of people living with MND have the frontotemporal type which can cause aggression so I think you can put her mind at rest on this.

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

  5. #5
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    Thanks for your reply Barry. I’ll pass that news along to her.

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