The district nurse is going to visit on Monday with new plumbing so I am not dependent on carers to hoist me on the commode 4 x day. What a relief that will be. I am being referred for a supra pubic catheter asap. Hooray 🥳🍾
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Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily. -
That's a huge plus for you Rosemary6NT roll on Monday 👍👍
Let's hope you won't have too long to to wait for the suprapubic one. xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Thats good news Rosemary.xDiagnosed May 2021 bulbar onset als.Comment
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Rock on Rosemary6NT 👍🌟😘😍xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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Rosemary6NT that sounds as if it’ll be a great relief and eliminate a big source of stress for you both, hope all goes very well xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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Uh oh, it’s been delayed until Thursday 😞Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Keep your chin up. At least it's being dealt with.Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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True xxOriginally posted by matthew55 View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Rosemary6NT That's disappointing - could you manage a SheWee or other female bottle for a few days? xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Ellie I did get one a couple of months ago but it proved a bit of a “damp” squib lol 🥴Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Wonderful I'm glad I tuned into this discussion. To be honest I don't see how it could possibly work but then its been along time since I've seen past my belly button. 🤭when i can think of something profound i will update this.Comment
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Catheter duly installed. It was a bit of a palaver but what a relief! Goodbye to all that hoisting 😀🥳Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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The relief is blissful 😊👍❤️🍪xxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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Rosemary6NT Good for you girl 👍👍😘Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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