Morning everyone. I was contemplating what we could call our early morning club and came to the conclusion if the early bird catches the worm then the only option is the early worm club. Sort of doesn't sound quite so good but then I don't want to offend any worms. ๐ฌ
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Good morning. Don't think I'm ever awake this time of day/ night. Having a bad night and feeling a bit angry and frustrated by things. Also keep waking gasping for breath - can you have a panic attack in your sleep? Husband snoring away beside me and I just want to yell 'shut up"... but I can't ๐คฃ
Must try to sleep again....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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denise - I managed to get back to sleep but I feel especially tired today. Waiting for my carer but luckily my daughter doesn't have school this week. I need a nap already ๐คฃDiagnosis 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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TinyLady
Anger and worry are so destructive of sleep arenโt they? And anxiety about breathing so easy to get, I have struggled with it too (and given medication to help). You have really been let down with support. Thanks I hope and trust you will find NIV really useful and reassuring. Hang on in there until your appointment xDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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Heather R - yes, got the nippy yesterday so hopefully will start getting used to it soon. I'm so tired all the time rather than anxious. All I want to do is sleep.
Last night was a real bad one for me, thankfully I'm usually a good sleeper. I just feel very unsupported (medically) a lot of the time, but not sure what I need. Reassurance probably. Someone to talk everything through with who listens, believes me and cares enough to help find solutions. In the middle of the night it can all feel overwhelming 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!
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TinyLady i wish i could give you a hug. thats not nice feeling liike that. ive got the big chc meeting tomorrow and ive signed up for online yoga at 10am. im hoping it will calm me or it might endanger my moving parts so i dont get to go. either way im not looking forward to tomorrow. i want to be calm but dangerous. im thinking along the lines of those big cats that have been spotted around the country. im off to sharpen my teeth.when i can think of something profound i will update this.
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those were the days ๐คwhen i can think of something profound i will update this.
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TinyLady
โReassurance probably. Someone to talk everything through with who listens, believes me and cares enough to help find solutions.โ
Who wouldnโt want that in your position? Itโs a tragedy that you havenโt got that at the moment. Hugs for you x
denise go girl, weโll be thinking of you tomorrow xDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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TinyLady
Well no worries about being awake at two or three in the morning.
I either haven't got to sleep by then, or I have woken up.
It can be a good excuse for another snack.
This morning I just popped two more co-codamol and some Altraplen. Then put my audio book back on.
No snoring to listen to here. You would think I had four in my bed, the way I sleep right on the edge.
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denise - please tell us you have survived the yogaHi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring.
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