Spinocerebellar Degeneration

Hi.
 "A diary of tears" about a girl she has the same disease The diary, a true story based on her own life, was originally written in first person. It is about a girl coping with her teenage life along with a degenerative disease. She keeps a diary of not only what she does but how she feels and the hardships she must endure. Initially, the diary's purpose was for Kitō to chronicle impressions she had about how the disease was affecting her daily life. As the disease progressed, however, the diary became Kitō's outlet for describing the intense personal struggles she underwent in coping, adapting, and ultimately trying to survive her disease. As she notes in one entry, "I write because writing is evidence that I am still alive."

she was diagnosed with the same disease  when she was 15 years old. The disease causes the person to lose control over their body, but because the person can retain all mental ability the disease acts as a prison. So in the end she cannot eat, walk or talk.

Through family, medical examinations and rehabilitations, and finally succumbing to the disease, Aya must cope with the disease and live on with life until her death at the age of 25.

and the drama with the same title 1 litre of tears , was aired by Fuji TV in 2005 based on the life of Aya. The main character Aya Ikeuchi, played by erika sawajiri , depicts a girl with the same disease as Aya Kitō who goes through many of the same problems.

I really liked that drama a lot and also the movie but i cried so much, i cried 11 litre of tears. lol :O

i think you shud watch the japenese movie called 1 litre of tears

go on youtube and watch 1 liter of tears you will understand everything

Hello, I already seen this type of drama and it's a very very sad fate for Aya!
I became interested in this type of Disease and i'm currently studying it!...i want to made a cure for this disease..not only a treatment but a medicine or a way to cure this kind of this disease.
Yeah i'm only 17 years old and i don't have the knowledge to do it....but i'm on a research for several months...I will not give up!

YOU SEEM VERY YOUNG TO BE STUDYING THE DISEASE. IS THERE ANYOTHER RESEARCH BEING CONDUCTED AT THIS TIME? I HAVE THE DISEASE AND KNOW MORE ABOUT IT THAN MY DOCTOR. IT WOULD HELP IF SOMEONE WOULD KEEP US INFORMED ON THE LATEST ADVANCEMENTS IN MEDICINE, IF ANY?

jlmaddox wrote:

fujisweet04 wrote:

Hello, I already seen this type of drama and it's a very very sad fate for Aya!
I became interested in this type of Disease and i'm currently studying it!...i want to made a cure for this disease..not only a treatment but a medicine or a way to cure this kind of this disease.
Yeah i'm only 17 years old and i don't have the knowledge to do it....but i'm on a research for several months...I will not give up!

YOU SEEM VERY YOUNG TO BE STUDYING THE DISEASE. IS THERE ANYOTHER RESEARCH BEING CONDUCTED AT THIS TIME? I HAVE THE DISEASE AND KNOW MORE ABOUT IT THAN MY DOCTOR. IT WOULD HELP IF SOMEONE WOULD KEEP US INFORMED ON THE LATEST ADVANCEMENTS IN MEDICINE, IF ANY?

Ahh Yes...But i don't know..it's just i'm interested in that case of disease.
Uhmm, currently i haven't receive a report from my friend that is a Neuro-doctor..
But i'll inform you once I received a news from him.
You have this kind of disease??
When?

fujisweet04 wrote:

jlmaddox wrote:

fujisweet04 wrote:

Hello, I already seen this type of drama and it's a very very sad fate for Aya!
I became interested in this type of Disease and i'm currently studying it!...i want to made a cure for this disease..not only a treatment but a medicine or a way to cure this kind of this disease.
Yeah i'm only 17 years old and i don't have the knowledge to do it....but i'm on a research for several months...I will not give up!

YOU SEEM VERY YOUNG TO BE STUDYING THE DISEASE. IS THERE ANYOTHER RESEARCH BEING CONDUCTED AT THIS TIME? I HAVE THE DISEASE AND KNOW MORE ABOUT IT THAN MY DOCTOR. IT WOULD HELP IF SOMEONE WOULD KEEP US INFORMED ON THE LATEST ADVANCEMENTS IN MEDICINE, IF ANY?

Ahh Yes...But i don't know..it's just i'm interested in that case of disease.
Uhmm, currently i haven't receive a report from my friend that is a Neuro-doctor..
But i'll inform you once I received a news from him.
You have this kind of disease??
When?

I HAVE HAD IT FOR 5 YEARS NOW. I'M USING A WALKER. I USE TO BE ACTIVE AND NOW NOTHING. THERE IS KNOW WAY THAT I CAN PUT INTO WORDS HOW IT EFFECTS YOU AS A PERSON MENTALLY AND PHYSICALLY. I INHERITED IT FROM MY DADS SIDE OF THE FAMILY. LIFE IS WHAT IT IS. I WOULD JUST LIKE TO GET WHERE I COULD FUNCTION BETTER AS A HUMAN BEING. GOOD LUCK TO YOU ON YOUR FUTURE ENDEAVORS.

spinocerebellar degeneration desease has no cure. so just enjoy your life. be strong. fighting! God bless you :)

i think this kind of disease has no cure yet..i just hope doctors now has finally find a way to prevent this.

Hello, I'm only 15, a high school student. Even though I may not have this disease, I still think I know a little bit of this topic. I started knowing about this disease as I watched a Japanese movie depicting the life of a high school girl to the very end of her life. It is such a wonderful movie not only because of the acting that is so realistic and the various ways of expressing the intentional emotions, but also because this was based from a real life story! Knowing this, I watched it till the very end and even the special episode. It made me realize a lot of stuff.

This disease, Spinocerebellar degeneration is a cruel disease slowly taking out your control over your body. It is a type of disease, usually termed as ataxia and is known for it's slow but progressive effects. From the word itself, the spinal cord and the cerebellum are infected. Current technology identifies its cause to be hereditary or of any malfunction in daily life system like: change in metabolism, lack of vitamins and nutrients, etc. It degenerates and destroys the neutrons on the brain causing difficulties in controlling your movements. It acts as if it reigns over the sovereignty of your body.

At first, the person will notice the symptoms such as falling around oftentimes, having difficulty in seeing and misinterpreting the distance of an object. Falling around was the clearest symptom, as a normal person would normally extend his/her hand to the ground to prevent damage, the person with this disease does not. It only signifies the loss of the coordination of his/her muscles at oftentimes.

Later on, the disease will reach to the next level, confronting on such events with disability to walk properly, difficulties in speaking, choking, and staring as if nothing is happening. Later on, using a wheelchair and eating liquid or semi solid instead of solids will be necessary together with difficulty in producing sound and less control of your hands. Afterwards, the person will be bedridden and will have to depend on others. Friends and families are of great help to the person with this disease. At that time, they might be the only ones who can give support and comfort the person. But even before you know it, this disease will cause depression among yourselves and with other people too. The requirement of help from others will call out more attention than is expected as to more help will be needed. But after all of this, have courage to ask for help because in a crowd of frown, there are always a sea of smiles for you. Seeing this as much, you must always realize within yourself, that you must not give up as many are willing to give you a helping hand.

As I said before, I was really touched by the story. I learned a lot, realized so many and felt the warmth of other's shoes numerous of times. I want to share this story together with my beliefs to all the persons who might read this. God has already planned out our life. Instead of hating Him for giving some person this slow but progressive disease, Thank Him!! because you might not have realized this, but maybe the the sand in his hourglass is at the tip of falling but God, mercily turns it around and was given time to say good bye. This disease, instead of draining all of your hopes, actually gives you time to say "good bye" and "thank you". Be positive about life, you are not always alone. Smile all you can, because these smiles are yours to keep. Ask for help as long as you can because no one prohibits you to. Participate as often as you can to show that you are living. And lastly, cry all you can, because it only shows how strong you are to accept a fact of life.

Hello,..your post regarding spinocerebellar ataxia was useful to know what the diesease. in that you written that there are some treatment ... please specify me about TREATMENT because my brother- in- law is facing this problem. and one thing I observed is it is heriditary diesease. please reply me please

I know the pain that! have one person loses self of distance herself she thinks something is close but far more reward. gradually as it takes away the ability of one. whether walking, writing as well as food ... to better understand it you can watch those movies that 1 litter of tears. a girl there it was true to life story. Japan was simply but with english subtitle.

Hi! there's a drama called "1 litre of tears" You can really relate in the story and the drama will help u understand it more. It's about a girl named Aya who was diagnosed with this disease. Even though the disease stops her from doing her usual activities, it didn't stop her to help other people by inspiring them. The drama is really sad and I cried a lot. Maybe someday if the disease u have right now worsen, u will be able to look forward in ur life by remembering aya's story XD ..It's a really beautiful movie.

i also know one with spinocerebellar degeneration disease

I also have cerebellum degeneration since 1978. Also told I had MS for several years. I'am 55 could yu tall me what Ivigg is?