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Husband in process of diagnosis

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  • Ellie
    replied
    A warm welcome to the Forum, Gill and sorry about your husband's diagnoses.

    Semantic Dementia is a variant of FTD (FrontoTemporal Dementia) which can be associated with, or go hand-in-hand with ALS.

    If ALS is confirmed, it does sound like bulbar onset but assume nothing! How far is he into testing - has he had an EMG test yet?

    Regarding the feeding tube procedure: the fact that his swallow is poor won't impact on the actual placing of the tube - the reason why we with MND need feeding tubes is because our swallow fails, so it's definitely not a complicating issue unlike respiratory function. Although the tube is passed down the throat during the PEG procedre, he'll be lightly sedated and doesn't have to actively swallow the tube. I don't know how much info you were given about what's involved, but here's aan info sheet or feel free to ask questions on any aspect of it. There are threads on it too - put Feeding Tube in the search box.

    https://www.mndassociation.org/app/u...be-feeding.pdf

    Has his Speech and Language Therapist been involved in the provision of communication devices/apps or does the SD complicate that?


    Take care.

    Love Ellie.

    Leave a comment:


  • Gilamon
    started a topic Husband in process of diagnosis

    Husband in process of diagnosis

    Hi My husband was diagnosed with semantic dementia in Dec 2019. He has been struggling with his speech and swallowing too. We're now advised that he probably also has ALS. I'm assuming that would be bulbar onset ALS as opposed to Progressive Bulbar Palsy. Although I'm not sure if they are the same. He has fasciculations on his tongue and arms and a little on his leg. He's no longer able to manipulate his tongue and speech is very difficult. The speech therapist has given us great support.
    We've seen a neurologist and are undergoing various tests to discount any other conditions.
    He is unable to eat any solids - all food is like a thin soup and he needs thickener in his drink.
    We've agreed to a feeding tube but I am concerned that swallowing is such a difficulty, it may not be an easy operation.
    Any advice on feeding tubes or anything else will be gratefully received!
    Many thanks Gill
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