actually it's really hard to face it when you know that you have that disease and yet there where no cure yet.... a treatment that will slow the process of the disease I bet it is better for the victim to be brave both in emotional and physically.... There's nothing imposible in our GOD, let us pRAY so that there will be a cure in this disease .. and if ever you relative or you got to the end that you are just waiting for the last minute of your life, be happy because GOD will always be at your family side , and GOD gave that disease because HE has a reason .... just don't lose Faith in our LORD JESUS..
hoope there will be a cure and GODBLESS YOU ALL
hoope there will be a cure and GODBLESS YOU ALL
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hey!!!i was able to watch the movie titled 'one liter of tears' that's why i was able to know this disease...and got interested of knowing it. i did'nt expect taht until now there is no cure for it...i am not one of the persons who got this spinocerebellar degeneration disease but i want to know more about it.i still had a lots of questions...like...aside from inheriting it...what are the other cause of this disease?and is there any viruses involve on it?i am really interested of this disease and i am now starting researching on this disease...i would love to know your knowledges about this....thanks....
my messsage to those who has this disease...never give up...and many loves you...you just don't know...and one more thing...have faith in God...He is always there for you.... :-D
my messsage to those who has this disease...never give up...and many loves you...you just don't know...and one more thing...have faith in God...He is always there for you.... :-D
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The disease is inherited meaning it runs in the family. I have known some parents, that witnessed the abnormal maturity of their children like having immovable arms and legs. When the parents traced their roots, their family tree, they noticed an interbreeding of two cousins, their great grandfather and great grandmother. I know also another couple who bore 17 children but only 3 survived out of the 17. The couple have same surnames (cousins). What our parents did in the past will simply affect their children and their children's children.
Those families with the disease have in their genome, a specific gene which, I think not discovered yet. Cancer gene have been identified in a human genome in the U.S.
Those families with the disease have in their genome, a specific gene which, I think not discovered yet. Cancer gene have been identified in a human genome in the U.S.
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Hi! I am just a normal student and wanting to know more about this Spinocerebellar degeneration disease. A sickness among your spinal cord. when i found out that up until now there is still no cure for it, i wonder " why up until now why do people needs to suffer with this kind of disease that has no cure. Is it that hard to find the answers from all this questions?"
but when i saw people who are still trying hard just to be able to live, I realized how life is so important to these people. I wonder what's the every cause of this sickness... or why does this sickness chose those person who has a deeper dream for living than others who was trying to commit suicide. Something that not even a great doctor can answer. This sickness, why do this sickness needs to be that so harmful? why does it still need to be so harsh for all the patients? Of all this time many people even children have this kind of disease. So please for those people who are also favor of my opinion, please reply and give me your opinion. I am also so amazed to these people who are trying their best just to live on despite of their sickness.
but when i saw people who are still trying hard just to be able to live, I realized how life is so important to these people. I wonder what's the every cause of this sickness... or why does this sickness chose those person who has a deeper dream for living than others who was trying to commit suicide. Something that not even a great doctor can answer. This sickness, why do this sickness needs to be that so harmful? why does it still need to be so harsh for all the patients? Of all this time many people even children have this kind of disease. So please for those people who are also favor of my opinion, please reply and give me your opinion. I am also so amazed to these people who are trying their best just to live on despite of their sickness.
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:-( Im very sad for what happen to you. But can I invite you to an interview for your disease?
Pls. I really need a person who can give me opinions and facts about your disease because this can be very useful to our research. Thank you.
Pls. I really need a person who can give me opinions and facts about your disease because this can be very useful to our research. Thank you.
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i think you should try watching 1 litre of tears its a japanese drama based on a true story about a girl who had the same disease as you. it could really help in a way. stay strong and live your life to the fullest!
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I hope you are all well.
Especially the original poster. Its been 9 years now.....
This disease and the unfortunate state of the people who have it for some reason... its so disheartening. and cruel.
And I just want to say keep on fighting it.
xx Love from sydney, australia
Especially the original poster. Its been 9 years now.....
This disease and the unfortunate state of the people who have it for some reason... its so disheartening. and cruel.
And I just want to say keep on fighting it.
xx Love from sydney, australia
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hello I'm from Philippines, i really want to learn more about spinocerebellar degeneration disease, i hope that the doctors can find a cure
about the one who posted this topic 9 yrs ago
i hope that you are still okay. i want to say that there are someone who always there to help you
i also can be your friends.... i hope that you are still happy.... just trust your Family, and Friends.....
Thanks....^_^
about the one who posted this topic 9 yrs ago
i hope that you are still okay. i want to say that there are someone who always there to help you
i also can be your friends.... i hope that you are still happy.... just trust your Family, and Friends.....
Thanks....^_^
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hi again....
i love your stories...
my "sister", she's just 18 years old...
she didn't give up...we help her...always...]
i'll share it to you as well!!!
that story...
she's not actually my "biological" sister...i met her, because of my Kyo, when i was in grade school...i love her so much that lead me closer to her and to the people who have something to do with her...honestly, we're really very far from each other, i mean, i live in philippines and she studies in japan...because she's a japanese...she was a "fun" & "funny" type gal who never have forgotten to laugh...she was childish and playful...that time i really thank Kyo, for having a girlfriend like her...(Kyo is my "kuya" 'older brother')
every time i go to their house and talk with her, neverending...my knowing and knowledge 'bout her gets deeper...until such time that i knew she had a disease...she told me it was a "no worry" because it was since she was young...she was healthy and "carefree"...i did not know it was "spino"...there were some days that while we were eating her spoons or chopsticks (whatever she uses) falls...sometimes, when she eats she gets choked by just small foods...which babies can actually eat...every time i see she was like that i want to fall of and i kept on asking myself "how" and "why"...nobody told me she was getting worse...one day i found i cd inside Kyo's room...i thought it was interesting because i love japanese movies (except porns) especially, horrors...i asked her 'bout the movie...it was entitle, "litre no namida", which means "liter of tears"...i could remember the not actually the exact lines she said, but almost..."i don't like that movie, for me it sucks...don't watch it...for it hurts me a lot whenever i see that..", that was what she said...i watched it, for it was the first time i heard her speak that way...when i finished it, i realized that maybe it was somehow connected to her...especially, that we call her "aya"...as well...
i was able to witness the time she started to breakdown...when she used wheelchair..."that movie doesn't suck...i was just a fool who cannot accept what's happening to myself"...that was what she said...she kept on trying to push herself to speak and to walk...to be normal...she even broke her right shoulder because of falling down...those times i almost, "breakdown"...
those were some of our times together...
i cried in school during our class...i disturbed a lot...i was sent to the principal's office when somebody knew why i was in a bad mood...i was almost sent to the guidance...
"be happy for her now that she's free..."that's what our principal said...
"we should not lose hope...we are in pain, but she suffers more than we do...if we stand up tall...she has something / someone to lean on"...that's what Kyo said...
so never give up not for yourself...but for them...
God bless...
and yeah...to those people who's interested on talking 'bout me with this disease you are free to be...interview or whatever...i juyst thank you all for replying back to my message...
Love you all!!
Inoukame Otohime
13
uhm...dedicated to...
Harume Ayaka...
also, on behalf of my brother Kyoshiro...
o^u^o
i love your stories...
my "sister", she's just 18 years old...
she didn't give up...we help her...always...]
i'll share it to you as well!!!
that story...
she's not actually my "biological" sister...i met her, because of my Kyo, when i was in grade school...i love her so much that lead me closer to her and to the people who have something to do with her...honestly, we're really very far from each other, i mean, i live in philippines and she studies in japan...because she's a japanese...she was a "fun" & "funny" type gal who never have forgotten to laugh...she was childish and playful...that time i really thank Kyo, for having a girlfriend like her...(Kyo is my "kuya" 'older brother')
every time i go to their house and talk with her, neverending...my knowing and knowledge 'bout her gets deeper...until such time that i knew she had a disease...she told me it was a "no worry" because it was since she was young...she was healthy and "carefree"...i did not know it was "spino"...there were some days that while we were eating her spoons or chopsticks (whatever she uses) falls...sometimes, when she eats she gets choked by just small foods...which babies can actually eat...every time i see she was like that i want to fall of and i kept on asking myself "how" and "why"...nobody told me she was getting worse...one day i found i cd inside Kyo's room...i thought it was interesting because i love japanese movies (except porns) especially, horrors...i asked her 'bout the movie...it was entitle, "litre no namida", which means "liter of tears"...i could remember the not actually the exact lines she said, but almost..."i don't like that movie, for me it sucks...don't watch it...for it hurts me a lot whenever i see that..", that was what she said...i watched it, for it was the first time i heard her speak that way...when i finished it, i realized that maybe it was somehow connected to her...especially, that we call her "aya"...as well...
i was able to witness the time she started to breakdown...when she used wheelchair..."that movie doesn't suck...i was just a fool who cannot accept what's happening to myself"...that was what she said...she kept on trying to push herself to speak and to walk...to be normal...she even broke her right shoulder because of falling down...those times i almost, "breakdown"...
those were some of our times together...
i cried in school during our class...i disturbed a lot...i was sent to the principal's office when somebody knew why i was in a bad mood...i was almost sent to the guidance...
"be happy for her now that she's free..."that's what our principal said...
"we should not lose hope...we are in pain, but she suffers more than we do...if we stand up tall...she has something / someone to lean on"...that's what Kyo said...
so never give up not for yourself...but for them...
God bless...
and yeah...to those people who's interested on talking 'bout me with this disease you are free to be...interview or whatever...i juyst thank you all for replying back to my message...
Love you all!!
Inoukame Otohime
13
uhm...dedicated to...
Harume Ayaka...
also, on behalf of my brother Kyoshiro...
o^u^o
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hi again....
i love your stories...
my "sister", she's just 18 years old...
she didn't give up...we help her...always...]
i'll share it to you as well!!!
that story...
she's not actually my "biological" sister...i met her, because of Kyo, when i was in grade school...i love her so much that lead me closer to her and to the people who have something to do with her...honestly, we're really very far from each other, i mean, i live in philippines and she studies in japan...because she's a japanese...she was a "fun" & "funny" type gal who never have forgotten to laugh...she was childish and playful...that time i really thank Kyo, for having a girlfriend like her...(Kyo is my "kuya" 'older brother')
every time i go to their house and talk with her, neverending...my knowing and knowledge 'bout her gets deeper...until such time that i knew she had a disease...she told me it was a "no worry" because it was since she was young...she was healthy and "carefree"...i did not know it was "spino"...there were some days that while we were eating her spoons or chopsticks (whatever she uses) falls...sometimes, when she eats she gets choked by just small foods...which babies can actually eat...every time i see she was like that i want to fall of and i kept on asking myself "how" and "why"...nobody told me she was getting worse...one day i found i cd inside Kyo's room...i thought it was interesting because i love japanese movies (except porns) especially, horrors...i asked her 'bout the movie...it was entitle, "litre no namida", which means "liter of tears"...i could remember the not actually the exact lines she said, but almost..."i don't like that movie, for me it sucks...don't watch it...for it hurts me a lot whenever i see that..", that was what she said...i watched it, for it was the first time i heard her speak that way...when i finished it, i realized that maybe it was somehow connected to her...especially, that we call her "aya"...as well...
i was able to witness the time she started to breakdown...when she used wheelchair..."that movie doesn't suck...i was just a fool who cannot accept what's happening to myself"...that was what she said...she kept on trying to push herself to speak and to walk...to be normal...she even broke her right shoulder because of falling down...those times i almost, "breakdown"...
those were some of our times together...
i cried in school during our class...i disturbed a lot...i was sent to the principal's office when somebody knew why i was in a bad mood...i was almost sent to the guidance...
"be happy for her now that she's free..."that's what our principal said...
"we should not lose hope...we are in pain, but she suffers more than we do...if we stand up tall...she has something / someone to lean on"...that's what Kyo said...
so never give up not for yourself...but for them...
God bless...
and yeah...to those people who's interested on talking 'bout me with this disease you are free to be...interview or whatever...i juyst thank you all for replying back to my message...
Love you all!!
Inoukame Otohime
13
uhm...dedicated to...
Harume Ayaka...
also, on behalf of my brother Kyoshiro...
o^u^o
i love your stories...
my "sister", she's just 18 years old...
she didn't give up...we help her...always...]
i'll share it to you as well!!!
that story...
she's not actually my "biological" sister...i met her, because of Kyo, when i was in grade school...i love her so much that lead me closer to her and to the people who have something to do with her...honestly, we're really very far from each other, i mean, i live in philippines and she studies in japan...because she's a japanese...she was a "fun" & "funny" type gal who never have forgotten to laugh...she was childish and playful...that time i really thank Kyo, for having a girlfriend like her...(Kyo is my "kuya" 'older brother')
every time i go to their house and talk with her, neverending...my knowing and knowledge 'bout her gets deeper...until such time that i knew she had a disease...she told me it was a "no worry" because it was since she was young...she was healthy and "carefree"...i did not know it was "spino"...there were some days that while we were eating her spoons or chopsticks (whatever she uses) falls...sometimes, when she eats she gets choked by just small foods...which babies can actually eat...every time i see she was like that i want to fall of and i kept on asking myself "how" and "why"...nobody told me she was getting worse...one day i found i cd inside Kyo's room...i thought it was interesting because i love japanese movies (except porns) especially, horrors...i asked her 'bout the movie...it was entitle, "litre no namida", which means "liter of tears"...i could remember the not actually the exact lines she said, but almost..."i don't like that movie, for me it sucks...don't watch it...for it hurts me a lot whenever i see that..", that was what she said...i watched it, for it was the first time i heard her speak that way...when i finished it, i realized that maybe it was somehow connected to her...especially, that we call her "aya"...as well...
i was able to witness the time she started to breakdown...when she used wheelchair..."that movie doesn't suck...i was just a fool who cannot accept what's happening to myself"...that was what she said...she kept on trying to push herself to speak and to walk...to be normal...she even broke her right shoulder because of falling down...those times i almost, "breakdown"...
those were some of our times together...
i cried in school during our class...i disturbed a lot...i was sent to the principal's office when somebody knew why i was in a bad mood...i was almost sent to the guidance...
"be happy for her now that she's free..."that's what our principal said...
"we should not lose hope...we are in pain, but she suffers more than we do...if we stand up tall...she has something / someone to lean on"...that's what Kyo said...
so never give up not for yourself...but for them...
God bless...
and yeah...to those people who's interested on talking 'bout me with this disease you are free to be...interview or whatever...i juyst thank you all for replying back to my message...
Love you all!!
Inoukame Otohime
13
uhm...dedicated to...
Harume Ayaka...
also, on behalf of my brother Kyoshiro...
o^u^o
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i know its hard to be a research for this disease but the symptoms of this disease was slow to show the first sign of the disease was you will fall down then your body will dont have any reaction unless your face will have a wound hard to speak hard to eat you cannot write you will lost your sight and you cannot do anything like sports and youll never gonna speak until a couple of years in ur age of 25 years old you will die this disease killed many life of people on this planet just like aya ikeuchi
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yes i love the movie, and it does have much info (: it's sad but keep fighting on everyone =)
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Hi...
Have ya'll watched a movies that make frm thee Japanese pepo's...Its called One Litres Tears base on true story frm this little gurl...Its about a diesase frm Spinocerebellar Degeneration its a vury good movies ya'll should watch it...
Have ya'll watched a movies that make frm thee Japanese pepo's...Its called One Litres Tears base on true story frm this little gurl...Its about a diesase frm Spinocerebellar Degeneration its a vury good movies ya'll should watch it...
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Hi, my brother was diagnosed with spinocerebeller when he was 35 - he has gradually got worse. He is now 49 and cannot walk, talk, or feed himself - he is bedridden. I am sorry for anyone with this disease as i know there is no cure for it. He is in hospital at the moment because he was dehydrated and now only weighs 3 stone. He refuses food regularly and i do not know whether this is because of the condition or because he chooses not to eat. I can still communicate with him so i know he does know what is going on to a certain degree.
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this blows buns.... if u wanna know more about this u can look up 1 litre of tears or buy it online or soemthing. its a good movie about a girls willpower to make it through her life with this disease, i cryed but its good. the tv series is better if u ask me, i know this isnt really helping but it might. idk...
peace be with ya pal.
and you wont die from the disease anyway, were all goona die 2012 from the same fate. WOOH HOO....see ya then
L.M.
peace be with ya pal.
and you wont die from the disease anyway, were all goona die 2012 from the same fate. WOOH HOO....see ya then
L.M.
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