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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Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily. -
oh rosemary that is wonderful. I am so very happy for you.
💕😘when i can think of something profound i will update this. -
Thank you Denise xxOriginally posted by denise View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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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.Comment
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Fantastic news, good for you. 👍😀🤗😍xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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That is good news.Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comesComment
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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.
That's more like it 👍👍 From the moment my carers step into my house every morning until I'm sat showered, dressed, meds given and ready for my precious daily coffee, takes about 75mins.Originally posted by Rosemary6NT View Post
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.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Fantastic news xxDiagnosed May 2021 bulbar onset als.Comment
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So glad for you Rosemary, amazing how they can vary! XDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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Wonderful news RosemaryRichardComment
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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!Comment
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Great news.so pleased for you xxComment
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That is excellent. Always heartening to read good news on here.Comment
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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 😺.Comment
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Thats great news
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