Just met two very nice and down to earth chaps who will visit three times a day for ten minutes which suits me perfectly. So far so good. ππππ€xx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
That sounds good, Matthew, glad you have taken the plunge with carers, hope you feel better supported with them coming xDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning! -
What does cic stand for? π€when i can think of something profound i will update this.Comment
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Care in CommunityBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Great news Matthew. I trust they are trained to manage your needs?Iβm going to do this even if it kills me!Comment
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Glad you have some help at last.
Best wishes
MaryComment
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Very glad that you made the decision to have carers and it sounds like theyβre good. I hope that it works as well as you want it to, Lynne xALS 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 Good news they are down to earth chaps...10 minutes doesn't seem much time...but I'm guessing you feel that's enough. Most care agencies in my area will not provide less than 30 minutes each visit.
Hope it all goes well & you feel the benefits of their supportπInitial 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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matthew55 That is sooooo good to hear and hopefully it will alleviate some of the boredom and lonliness for you.
But, pardon my ignorance M'Lud... Will they do anything medical in those 10mins or do they keep an eye on you? xxβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
βComment
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What will they do for you or is it just to make sure you are Ok? Not sure what anyone can do in 10 minutes. That's probably when you've sat on the loo they turn up π€when i can think of something profound i will update this.Comment
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The company I worked for charged a minimum of 30 minutes, even if our work took less than that. I heard about another company that started at 15. Sounds like CIC is a win win! Assuming they aren't too expensive, that is.Mum died with MND in 1979 β My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.Comment
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matthew55 said CIC are Nurses, not carers. ??βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
βComment
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Well they wear blue and are only here to PEG me. I have asked for just three visits per day. I have asked for other carers but nothing heard yet. πxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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