Different gravy and such a difference to the last lot. Right at Home gets a massive thumbs up from me. ππππ€xx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
That's great. How do they differ? x
Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning! -
I feel they care about me as a person not just a client. πβ€οΈππBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Great to hear thay you're happy with them mate ππ xxxβDiagnosed 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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Brilliant newsπππOriginally posted by matthew55 View PostInitial 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 that can make such a difference can't it.xxDiagnosed 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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Thats great matthew55 . So pleased you're happy with your new carers. ππ
As an irrelevant aside I love your avatar. One of our sons was so obsessed with the cartoon that his nickname was Gadget . π€£ππ€xxComment
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Really happy hearing this matthew. Living alone is hard but made better with care. You deserve it xDiagnosed May 2021 bulbar onset als.Comment
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I'm going to ring a few this morning. I've got a card with money on to pay for care and a few numbers to call from caring for carers. I suppose they come here and discuss our needs. I'm hoping to get a 4 hour break for me and somewhere Stephen can go and get him out of the house. I feel a bit nervous as the last lot I tried really upset me and put me right off.when i can think of something profound i will update this.Comment
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denise oh that's not good, hope you find some nice ones xxDiagnosed 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 Mathew xOriginally posted by matthew55 View PostALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.Comment
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Good luck for a nice 4 hours for Stephen and that you can relax xxOriginally posted by denise View Post
ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.Comment
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Great news Matthew, that must be a relief. We are just about to start the search for carers πOriginally posted by matthew55 View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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denise Really hope you find good help my lovely 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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So do I. I'm going to try age UK first. Just heard from fronto temporal dementia organisation who have some suggestions but saying covid/Christmas holdups. I'm going to leave dementia UK for a while because I'm waiting to see what mnd/neurologist team say. To be honest I don't know what to do? Too many cooks or just sit back and nowt happens. Which seems more normal and I end up writing stroppy emails. I'm happy today. Goodness knows why. But hey make the most of it. Sunbathing this morning helped. π what happens if you don't like them? Can you imagine getting to say "you're fired!". Gosh. New one for me though I did get rid of last lot but got social services to do it for me. The power of it all. πwhen i can think of something profound i will update this.Comment
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