Good morning my fellow torch beares. When newly diagnosed with MND/ASL it is a very dark and lonely place you find yourself in. We are here to give a light to follow to support, advice,help and love. Respect. πππ€πxx
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Good morning Mathew and everyone else, a lovely bright morning greeted me here by the window in our living room where Iβm now sat on my RR chair xxALS 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.
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I woke at dark o'clock shivering π₯Άπ₯Ά! Already organised an extra blanket for tonight so I won't be an Early Bird again. Speaking of birds, they've been very busy these last few mornings.
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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 all carers and livers. Except we are all both carers, because we care for eachother, and livers, because we all live with MND/ASL either directly or indirectly. We are together, we are family and we are one. ππ€π§πxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx
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Good morning and thanks Mathew x
Ellie, I hope that you had a warmer night and your local birds didnβt wake you too early, x
Good morning Gordon, Deb and everyone else xxALS 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.
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Originally posted by Lynne K View PostEllie, I hope that you had a warmer night
That was 2am, I woke at 8am, so a good night. Thanks for asking Lynne 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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Here's a poem about morning....for all the early birds.
A Morning Offering by John O'Donohue
I bless the night that nourished my heart
To set the ghosts of longing free
Into the flow and figure of dream
That went to harvest from the dark
Bread for the hunger no one sees.
All that is eternal in me
Welcomes the wonder of this day,
The field of brightness it creates
Offering time for each thing
To arise and illuminate.
I place on the altar of dawn:
The quiet loyalty of breath,
The tent of thought where I shelter,
Waves of desire I am shore to
And all beauty drawn to the eye.
May my mind come alive today
To the invisible geography
That invites me to new frontiers,
To break the dead shell of yesterdays,
To risk being disturbed and changed.
May I have the courage today
To live the life that I would love,
To postpone my dream no longer
But do at last what I came here for
And waste my heart on fear no more.
Initial 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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