Good morning my fellow livers. Having MND/ASL diagnosed is like being in a trench in 1913 and being told you are going over the top. Into an unknown world with death your only end. But then you notice that we surround you. We can support you every step of the way. Togetherness is our secret weapon. π«ππ€πxx
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G'day toute la monde ππ
Apparently it's less than 3 weeks until Christmas, so am freaking out about how little shopping I have done π±π±π±βDiagnosed 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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Good morning one and all. I have come to the conclusion that any time of day is silly o'clock for us. Lying down I have no worries about falling over, I can easily access both nostrils and perchance to dream. If I could answer the door, get my meds and set up my pump from my bed I would never get up! β½πππ€xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx
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Morning all...awake early but decided I refuse to get up in the dark....went back to sleep. Now ready to start the day.
Keep warm everyone...imagine those poor people still without powerβββββππInitial 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.ββββββ
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Morning all. Off to hospital today to have PEG fitted tomorrow. Apprehensive as I'm a wimp and over the last few days have lost the ability to transfer independently. I wonder how things will work in hospitalDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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