I am lucky, my hands are ok, I can still paint, which brings me joy. Seems this illness often robs the things you loved best...but I loved mountain hiking, and that one is firmly out! Anyone else find this sad synchronicity?
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olivia i love your paintings.
my husband can hardly use his hands now. he loved to drive he would happily drive all day without stopping given the chance. he's finding it very difficult.
his morning he said it would be easier if it was quicker. its the first time he's said anything like that.when i can think of something profound i will update this. -
I am not artistic or crafty at all. My main joy was walking the dogs.Kept me fit and makes you go out everyday.It would have been ideal over lockdown. Unfortunately it has effected my legs first. Think the last time I had a real walk was a year ago. Your paintings are lovely.Comment
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Thank you Denise😊 yes, it is the loss of what you want to do and used to do, often a very rapid loss, and the not knowing what will be next. My inclination is always to fight..but it is very hard to fight with both hands tied behind your back, no legs to run with and no weapons🙁Comment
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Lesley, I too have dogs and I have this time in my hands, I would have been out with them all the time, now I need assistance and have to fit round when others can help. It is very hard isn't it xComment
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we have always had dogs. dont think we only had one for very long there was always 2 or 3 and cats too. on the beach and in the woods it was so wonderful to be out and walking together.throwing the ball and being ignored, getting wet and covered in mud. our car looking a right mess. in a way i am glad the last one died a few years ago because i know my husband would have really missed being able to walk her. he can still walk but not far and he is always so tired. we used to go out 3 times a day. i can imagine how he would have felt if i went walking alone. he looks at the photos on our walls and he says how much he misses them.when i can think of something profound i will update this.Comment
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Denise, I can still use a mobility scooter, wouldn't be able to manage on my own, but with company, do get out every day with the dogs, and have a garden too. But walking wherever you want to go, with dogs, really is one of the best things xComment
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MND robs us from us our most loved things. Actions as much as anything else. The hard part is trying to forget it and concentrate on what we still have instead. It's hard not to believe that MND has a malignant mind behind it and controlling it. 😉😄XBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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olivia i think with dogs you sort of live your childhood. you take them to the beach you take them to the river you just do things you would have done as a kid. you live your life through them. its like taking time out of your day to leave the house stuff and go and have fun. even if its just sitting on a bench watching the world go by its great because you have your best mate sitting next to you. when its been bucketing and the wind is blowing a gale ive been out and they have looked at me like do we really have to do it and yet its weirdly enjoyable and you get home damp, cold and smelly wet dogs in the house and a nice cuppa and biscuits and a tin of dog food and the world is a better place. i do miss it.when i can think of something profound i will update this.Comment
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Lovely paintings, Olivia - thanks for sharing xDiagnosed 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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Lovely paintings Olivia. I was never any good at art but a friend with MND got me into painting with an app which converts photos into paintings. I know to purists it sounds like cheating but it’s great fun and it occupies the time I spend in my armchair.I’m going to do this even if it kills me!Comment
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Matthew, I agree, I've thought of it that way at times, and then at other times I've just thought... the proverbial * just happens! I actually felt better when I stopped taking it personally, and just thought, I'll occupy myself in whatever way I can, body and thought, so it became a sort if irrelevance, if you know what I mean - there, but not worthy of my precious time or energy🙂
Denise, we really are lucky to know or have known dogs and all they bring to life.🐾Comment
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Olivia, I love your paintings.
My arms/shoulders were the first sign of MND, as a keen cyclist and motorcyclist (I had 3 motorbikes) I was totally gutted after I could not hold up a motorbike (I dropped one at a standstill) and disappeared over the handlebars after braking on a cycle (arms collapsed).
I am/was a very keen DIYer, and a qualified electrician. I have a 20ft x 18ft garage with a good collection of tools that I now cant use., and my son and daughter have no interest in them.
Devastated is not a strong enough word to use.Diagnosed 2nd Jan 2020
Both arms/shoulders affected, left worse than right.
Progressive Muscular Atrophy suspectedComment
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Barry, I love the work of Sarah Ezekiel, eyegaze artist who also has mnd.Comment
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Beemer, that is the viciousness of it, it takes a full life, and crumbles it away, sometimes with a toothpick and sometimes with a sledgehammer. It seems the one thing we all share is very strong and resourceful minds, that strikes me time and time again when I see how people with mnd carry on, day after day, the mental strength. xComment
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