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 Posted: Thu Apr 30, 2009 11:13 am
Hola, Im Pixie this caught my attention because my Great Aunt recently passed away from Motoneuron Disease, and I think thats part of the dieseases this guild is about? Im not sure but they sound smimilar. Motoneuron Disease is basically when you lose use of all the muscles in your body and they become weak and useless - my aunt had had it for three years and had recently gotten to the stage where she was utterly paralised - all she had left really, was her voice but towords the end that went, too. I could never understand a word she said, and It was really upsetting. It was really weird seeing her like it, because all my life she's been the most idipendant person so it was bizzare seeing her having to rely on others to stay alive, and I know she hated it and wanted to do eithanasia ( i think that's what it's called ) but she couldnt because it's not legal. So, insted she decided to starve herself - she didn't drink or eat anything for two weeks straight, and in the end she was forced to eat because the nurses were worried - but by this point she had lost the use of the muscles in her throat, so she chocked to death and the nurses and doctors could do nothing to save her. Although i know that she wanted to go, and it sounds mean but part of me was happy she passed due to the fact that she was in so much pain and she was extreamly unhappy and it's what she wanted but i still miss her - although she was my great aunt we were extreamly close, and she was exactly like my grandma ( who was more like a mom to be growing up) who passed away a month before she descoverd her illness so it was almost like losing my grandma and a great aunt all over again. So i really want to help raise aweareness and i have done alot of fundraising and im hoping they will find a cure someday so that others don't have to suffer as she did.
Woah, depressing into..
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Posted: Thu Apr 30, 2009 12:24 pm
Hi Pixie!
MND was why this place was founded smile my Grandad died from it, he was the first person I had ever met who had it.
Then I go back in contact with Lou and found out that her boyfriend's father had MND, I was the first person she knew who had heard of it, she was the first person I had met who had heard of it.
So we started this place to raise awareness about it, and then found out about other diseases that weren't generally well-known, and the Guild's idea grew very quickly from then on.
I'm sorry you had to watch your Great Aunt go through it sad
My Grandad half starved himself, he refused to have a tube inserted in to his stomach, instead he had everything put in a blender. He eventually died in hospital when the disease took it's toll on his chest muscles.
It's not a nice way to go. There's a cancer charity over here in the UK whose motto is "Together we will beat cancer", I prefer to think of this place as "Together we will beat MND. And Alzheimers. And Muscular Dystrophy. And..."
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Posted: Thu Apr 30, 2009 2:43 pm
AkibeJosephus Hi Pixie! MND was why this place was founded smile my Grandad died from it, he was the first person I had ever met who had it. Then I go back in contact with Lou and found out that her boyfriend's father had MND, I was the first person she knew who had heard of it, she was the first person I had met who had heard of it. So we started this place to raise awareness about it, and then found out about other diseases that weren't generally well-known, and the Guild's idea grew very quickly from then on. I'm sorry you had to watch your Great Aunt go through it sad My Grandad half starved himself, he refused to have a tube inserted in to his stomach, instead he had everything put in a blender. He eventually died in hospital when the disease took it's toll on his chest muscles. It's not a nice way to go. There's a cancer charity over here in the UK whose motto is "Together we will beat cancer", I prefer to think of this place as "Together we will beat MND. And Alzheimers. And Muscular Dystrophy. And..." I'm sorry to hear about your grandad, and yes my aunt didnt want a tube either - i guess when you have that you go into a frame of mind where you no longer want to suffer. And is that slogan used with race for life? im doing the race in birmingham and thats the motto on the enter form. it's really great that you have founded this place its nice to talk about this with people who know what it's like to see loved ones suffer and understand better its a really good idea and raising awearness, too.
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Posted: Fri May 29, 2009 10:15 am
Those stories break my heart. I know they're in a better place now, free from suffering! We need to find cures for this ... we NEED to.
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