I'm meeting the boss of a new, smaller and more expensive care agency tomorrow. Better late than never eh? π·π€π€πxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Good luck Mathew xxALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes. -
matthew55 sounds promisingππ»Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.ββββββComment
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Yeah,here's hoping mateComment
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I hope it goes wellOriginally posted by matthew55 View Post
Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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That's great news mate, hopefully you'll get the best Christmas present ever π€π€
I haven't been able to read as many posts as usual in recent days, so do I take it that the showdown meeting with current agency yielded nothing? 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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The meeting was who could tell the biggest lie and be believed. π€¬π€―ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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No tears will be shed when you move agency so...
Have you anybody attending this meeting with you? 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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No just little old me and I. ππ€ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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No Karen available?
I think though you know what you want, and do not want - you're wiser to their potential for trickery πππβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
βComment
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Just had my meeting with the new agency and I think it means you will have the pleasure of my company a bit longer. Four visits a day of an hour each starting first week of January. Housework, meds given, pump set up the list goes on. Feel better about life now. ππππβ€οΈxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Oh and a dedicated team to boot. πππππππππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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matthew55 sounds fab about your new agency xxALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.Comment
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matthew55 sounds like you managed it all very well!! Great news and really glad it's lifted your spirits....couldnt be more pleased for youππ»ππ»ππ»Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.ββββββComment
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That's fantastic news Matthew πππOriginally posted by matthew55 View Post
Do the carers have to be trained in on using the pump, giving meds and flushes through the feeding tube or are they already fully trained?
That's the only way to have it with complex cases like ours.Originally posted by matthew55 View Post
How many carers will be on your team?
A Christmas Miracle ππ and a great start to 2022 ππ€ππ€
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.
βComment
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