Recent content by Sophia51

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    Husband's refusal to use NIV - ideas?

    Thank you both very much. I don't think he's refusing in order to bring this experience to an end - he just doesn't like the mask and the sensation of pushing in and out. We have tried a couple of other masks - but I think the bulbar involvement doesn't help much. I think we will just have to...
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    Husband's refusal to use NIV - ideas?

    My husband has rapidly progressing bulbar onset ALS. He should really be using his NIV now as he has trouble breathing at rest. His current ALS FRS R score is 7. He gets panic attacks when he uses it ,despite lorazepam.The max he can stand to do is an hour a day. What can we expect in the next...
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    Anxious about husband

    Anxious about husband
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    Wondering about refusal to use NIV ? My husband has a very aggressive from (bulbar) ALS and can...

    Wondering about refusal to use NIV ? My husband has a very aggressive from (bulbar) ALS and can no longer walk, talk or eat ( tube fed). He has a NIV , but hates using it, as it provokes panic attacks. He ought to be using it daily as he finds breathing at rest difficult now. I'm wonder what we...
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    Mobility question- looking for information.

    My husband was diagnosed with PBP in May and his speech is rapidly disappearing. In addition, he is experiencing muscular weakness in his chest, arms and legs. It seems very fast. Our consultant said that despite this, my husband may remain mobile until the end, as respiratory weakness will more...
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