If you haven't already got one I highly recommend that you seriously consider getting one. It's the best thing that's happend to me since diagnosis. I admit I was having nightmares before having it but I was so wrong. ππππxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Glad it's working out well for you.
Is it the community nurse who changes it or who? xxβDiagnosed 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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My carers but I can do it too.ππππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Blimey, a man of many talents ππ
Handy that your carers can do the changes. xxβDiagnosed 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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would a catheter be better than these conveen things?when i can think of something profound i will update this.Comment
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I think Conveens are best for occasional use, an indwelling or suprapubic catheter is best for full-time catheterisation. xxβDiagnosed 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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My word Matthew, Things are coming together for you lately .Glad you are getting good quality sleep, the catheter is helping and now you just need a housing offer.
Best wishes
MaryComment
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I'm not keen on putting them on. I'm sooo out of practice. π± Need some special kinds of fruit to tryout on.
when i can think of something profound i will update this.Comment
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What's a concern? π€Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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You don't want to know. π€€ Ellie didn't warn me. She got her own back in a round about way. I chickened out last night and I'm gonna have to do it tonight because conveen lady phoning again tomorrow. Bowel testing kit arrived. π¨ it just gets better.when i can think of something profound i will update this.Comment
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denise Thank you, thank you, thank you - you don't know how much I needed that laugh π₯°π₯°π₯°π₯°βDiagnosed 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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I'm glad you're enjoying this Ellie. Pants. Everything is pants or what's in them. π€£ππwhen i can think of something profound i will update this.Comment
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Well I did it! A success! Had to cut it off with scissors. Nothing like trying to read the instructions while holding a bag of pee. I have tallents I never knew existed. πwhen i can think of something profound i will update this.Comment
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Another accomplishment ππ
And the verdict on the device? Held fluid without leaking, comfy on Stephen? xxβDiagnosed 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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Yes good idea. Bit weird putting it on. Didn't leak. He didnt complain. Bit worried as a stand wasn't provided and the bed's quite high. I was dubious about him moving about and pulling it off but when it came to taking it off i can see its not easy to remove. Just need to be careful with the scissors πwhen i can think of something profound i will update this.Comment
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