I just had some disturbing news about my care agency. It seems the staff are leaving in droves but more clients are being taken on. Bottom line I won't get washed or shaved. If I didn't have this troll on my back I'd be a traveller. πππ€πxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Oh Matthew, hope that doesn't happen! The care sector has been desperate for so many years, and now worse xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning! -
And, just when we thought it couldn't get worse, along came Covid and frightened off many carers too...
My carers just got a pay rise, woop woop - now let's hope some good candidates apply to fill a vacancy π€π€
But yes Matthew, service provision is on a knife edge. xxβDiagnosed 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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I have a visitor next week about a PA type of service. I'll keep you posted. ππ€ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Ooh, that's interesting... π€π€πβDiagnosed 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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I might be getting morning help for Stephen a couple of mornings a week. Theres a housing and carer crises here so we shall have to see.
πwhen i can think of something profound i will update this.Comment
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Just heard on the news carers affected by fuel thing.Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Ambulances, nursing staff and everyone else not getting fuel. Food shortages because of no deliveries. Gas shortages. Lack of bus drivers and taxi drivers. Cold food distribution company supplying supermarkets has shut down. Meat shortages because they cant slaughter animals. Lack of social housing. House prices have risen. Covid. Crumbs πwhen i can think of something profound i will update this.Comment
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That's life in the 5th largest economy in the world π²π©π₯΄π±π€π€πππ€π¬π€¨π€£βDiagnosed 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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BREXIT
#ducks for coverπ
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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Haven't you built their house yet?? π€£π€£Originally posted by LindaB View Post
βDiagnosed 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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I'm working on itπInitial 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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Personally I don't miss MEP Leeches ππππ€xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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