I asked for help getting out of bed today. Well at least I can have an extra dream or two. π§π΄ππxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Hi Matthew, are you struggling to get out of bed now?Hope your care agency will add this to your care plan if itβs now needed.
best wishes
Mary xx -
Starting tomorrow morning I get to dream till 915. I struggle to get my duvet off and get my slippers on. Tomorrow I get that done plus my glasses and alarm necklace given to me. Then they will haul my sorry arse off the bed! Bliss! ππ΄ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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matthew55 they've got the key safe number now thenππInitial 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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Hi Matthew, as Linda said I hope you have a keysafe and maybe a lifeline system?( my lifeline provider asked that they are informed if and when I can longer speak to record on their records.)They would then contact me if I press lifeline to say they will ring my contact numbers for husband and relative who is also a key holder.
Sounds like you are getting the support as things change for you.
Best wishes
Mary xComment
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First day worked perfect! Now for the new voice. Happy Day! ππππππππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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