Originally posted by keno
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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.
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Originally posted by matthew55 View PostI couldn't face going back up so slept sitting up on my trusty sofa.
Could you get a second suction machine, so you can have one per floor, or is that pushing it... 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.
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Originally posted by matthew55 View PostI have a second machine I just haven't got round to setting it up
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.
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Originally posted by matthew55 View PostI just got the carers to set it up
No more unsafe midnight excursions... ππβDiagnosed 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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Originally posted by keno View PostShe is regular for 6 days.
Her boss is coming asses me tomorrow. I no longer want a male carer.
Dare I ask Ken, did you figure out who is paying for the carers - you or 'them'? ππβDiagnosed 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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keno glad to hear you had a positive experience with your carer. I had my first carer visit today, she helped me in the shower and get dressed. I too was apprehensive but all went well. She also changed the sheets on my bed and sorted out the kitchen. It is good to have made that first step.Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.
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Originally posted by Heather R View PostRosemary6NT glad you have a view of trees and sky from your bedroom window, how lovely. I am being particularly comforted at the moment by beautiful spring flowers. Last night about 3am, I was feeling definitely time for those advanced decisions, after a horrible few weeks with the trauma of cataract operation (when they only agreed to my using ventilator literally just before going into the operating theatre), and then not being able to shake off a chest infection despite being on my second antibiotics. Roll on spring and good weather xxDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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