I will later 😁x
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IMG_20210227_214324.jpg here you are.Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx
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Janette, it should really be in PSV mode, it's all to do with how the air (breath) is delivered and how much work you're left to do.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Does everyone have to go into hospital when they first have a NIV? My partner had an overnight breathing test and they are contacting us on Monday as they said it wasn’t very good. He is having lorazepam and morphine at night to help with his breathing and think they may be looking at giving him NIV very soon. Hope Mathew finds it works for him ❤️❤️❤️
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It's pathetic. I'm in a four bed ward with one other chap. He is 79 and partially deaf. He came in with breathing problems. He is on NIV for the first time just like me and his alarm has just gone off for the fourth time tonight. I have given up on mine because I take three breaths and my throat closes up. Ellie is spot on as usual and I will show her post to the doctor in the morning which is a very long way away. 😠Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx
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