The good news is that my new carers are BRILLIANT. I get the same two every morning for 90mins and lunch 60mins, which gives them plenty of time to shower, commode, PEG feed, medicate and anything else. They move and dress me confidently and gently and all with good humour and engagement. I cried with gratitude this morning. I hope I get to keep them and they are not switched out.
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Rosemary6NT great news...😘👍🏻xxInitial 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.
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Oh Rosemary, you don't know how thrilled I am to hear that - you must be so relieved, hence the happy tears.
Originally posted by Rosemary6NT View PostI get the same two every morning for 90mins and lunch 60mins, which gives them plenty of time to shower, commode, PEG feed, medicate and anything else.
I'm half tempted not to say this but... 😬 in time, you will need more than the two (brilliant) carers for holidays, sick leave etc., and it's best if cover carers are trained in by one, or both, of those carers.
I hope this will give you a boost. xxDiagnosed 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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Rosemary6NT - fantastic news. Absolutely thrilled, it must be such a relief. Would do a happy dance but home alone and that really wouldn't end well.
I have my job adverts out today for personal assistants, so this gives me hope I will also be fortunate 🤞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!
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Rosemary6NT so very happy for you, don't blame you shedding a few tears, it's such a crucial part of our lives ❤Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.
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