Today I went into our local town for some shopping. On the way I was struck by how familiar and comforting everything was on the way. We live about 10 miles from town and have lived here for 45 years. Now that my time is limited it made me appreciate things I have taken for granted in the past. Then I thought about how I would feel if the fields, animals and buildings were attacked as they are in Ukraine. I just can’t imagine it but I did send up a prayer of thanks to God and to pray that the war there will end soon. Small things bring me pleasure these days and put things in perspective.
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Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes -
I also am thankful of the small things. Like watching the dogs cuddle up with me on the bed. Seeing the sun shining reminding me that summer won't be far away.
I'm ex army and saw the devastation unfold in the former yugoslavia.
I can only hope someone steps in and takes out the idiot.Diagnosed May 2021 bulbar onset als. -
That's a daily dinner table topic for us - cannot fathom why someone hasn't done it by now 🤔Originally posted by shelly21 View PostDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Kgb might have a little bit to do with it. But there is a daily hope in my that it will happenDiagnosed May 2021 bulbar onset als.Comment
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Think the gang in the Middle East should do what they do best... 😉Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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When we lived in Portugal. We had to leave our home because of fire. It was terrifying not knowing where to run to and being told 'get out, no one is coming to help'. The fear of losing our lives, our home and not being able to contact our family was, I can't even think of the right words. We saw fire everywhere, you can't imagine it unless you witness it. So to see these poor people in Ukraine and I think how would I have coped with Stephen the way he is now. We would have probably had to stay and hope for the best. Don't we have enough with covid and nature fighting back. I never thought Id live to see this. There is so much we take for granted that is so easily taken away.
when i can think of something profound i will update this.Comment
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Every day is tough for people with mnd compared to many others, but equally, living in the 'good' moments is something you definitely learn to do with this illness and they can be very ordinary but also precious.
For the brave Ukrainean people, their moments are currently filled with terror and survival, but courage too. If ever we needed reminding of the danger of allowing despotic leaders to gain unchecked power, this is it.Comment
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Desiderata
GO PLACIDLY amid the noise and the haste, and remember what peace there may be in silence.
As fax as possible, without surrender, be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant;
they too have their story.
Avoid loud and aggressive persons; they are vexatious to the spirit. If you compare yourself with
others, you may become vain or bitter, for always there will be greater and lesser persons than
yourself .
Enjoy your achievements as well as your plans. Keep interested in your own career,
however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs, for the world is full of trickery. But let this not blind
you to what virtue there is; many persons strive for high ideals, and everywhere life is full of
heroism.
Be yourself. Especially do not feign affection. Neither be cynical about love; for in the face of
all aridity and disenchantment, it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself
with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less
than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be
at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations,
in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken
dreams, it is still a beautiful world. Be cheerful. Strive to be happy.
By Max Ehrmann© 1927
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I have read this before. Its beautiful. I keep saying I will learn a poem off by heart.
thank you
Xxxwhen i can think of something profound i will update this.Comment
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Today the sun shone, daffodils are blooming in the garden, I felt OK so all in all not a bad day.Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comesComment
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Went to a carers group today, one of the other carers said that she was thankful because her husbands problems weren't as bad as my husbands. Does that count?Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22Comment
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No way does that count. What on earth was the woman thinking. Obviously didn’t engage brain before opening mouth
Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comesComment
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She didn't mean to be mean, she says she thinks about me every day, but it didn't exactly cheer me up!!!!
Hey ho, onwards and upwardsCarer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22Comment
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Sometimes we say things which are supposed to be nice but come across as sounding horrible. I can say things and then think some hours later that I hope they didn't take that the wrong way. 🙄when i can think of something profound i will update this.Comment
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