Just told today that my cares are not allowed to PEG my coffee as it isn't prescribed. Can you believe it? βπ π π€¬xx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
YepπInitial 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.ββββββ -
matthew55 - surely enforced caffeine withdrawal isn't good for you....Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!Comment
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I'll be dead by next Christmas so what's good for me don't count.Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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I think carers can only deliver prescribed or GP/nurse recommended fluids via PEG. matthew55 maybe discuss with GP or MND consultant? πInitial 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 - all the more reason to have what you want xxDiagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!Comment
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Oh Matthew that's so not fair. So you need to get someone else to do it for you? Blimey I've tried not having tea or coffee and its dreadful my head felt like it was going to explode.
you need a plan. π€when i can think of something profound i will update this.Comment
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But fed through your PEG you can't taste the coffee so is it important?Comment
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Not for taste but for caffeine and sugar.Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Have the carers themselves refused to do it, did one of them raise concerns about doing it or did it come from management because it's in your care plan?Originally posted by matthew55 View Post
It could be a safety issue, if the coffee isn't cold.
Your water flushes aren't prescribed, so a Dietitian could draw up, or add in, x mls of (cold) coffee to your daily diet sheet, if common sense doesn't prevail. You could also sell it as part of your laxative regimen.
Good luck π€π€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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The manager of the agency came round to see me and said because coffee wasn't prescribed they couldn't do it. They can make, prepare and attach the syringe but not allowed to press the plunger. I'm living in a real life soap! ππππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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That said a very very nice lady has totally ignored the new rule ππΉππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Ask one of your medical team to add to your support plan or as Ellie says diet sheet...if its recorded as necessary then carers will be able to give. IMO 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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But how did the manager know that you want coffee through the tube?Originally posted by matthew55 View Post
Under whose directive are the carers giving you water flushes and could this same person not 'prescribe' coffee in the same way they 'prescribe' water?
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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My dietician is coming tomorrow. She's my friend. ππβ€οΈπxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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