April 25th, 2010
Hello,

Have you and your sister considered having your doctors test you for SCA8? Personally, my legs ache when I am stressed out or when I take an antihistimine for some reason. Otherwise, I can go for days with no pain. I am 47 and that is the only symptom that I am aware of. The doctor says that I have nystagmus, but I don''t notice it. May I ask what your father died of?
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replied September 6th, 2011
Hi. Someone replied earlier posts about this disease and about a movie based on a Real Life Story. That is a true story. The movie is an original story that has similar character and events. The girl's real name is Aya Kito. The girl in the movie(s) is Aya Ikeuchi. There are:

Light Novel published in 1986, this is a written dairy by Aya Kito in Japanese.
Movie 1988 based on her life.
TV Drama Series (made in 2005) based in the future and it's Aya Ikeuchi with similar events to Aya Kito.
A movie (2007) in after-events with Asou (close friend or soulmate you could say).

I have seen the new TV series (2005) and movie (2007) in two days and I completely recommend this to everyone to see how brave she was in fighting with the disease. SCA was overwhelmingly very progressive and fast in Aya Kito/Ikeuchi's life and it was just too sad but I learned a lot from this disease.

If you want to watch the movie online, you can google it with "streaming" at the end of the series name, 1 Litre of Tears - thou' the quality/sound isn't so great and it's 4:3 screen. If you want to download a better quality with 16:9 widescreen you can do so at TokyoTosho.info (it a bittorrent program to download - go to utorrent.com and get the program from there). Search for 1 Litre of Tears and download it from there - the file should be about 5 to 6 gigs in size. It includes both movies as well (old movie (1988) and new one (2007)). All three shows were never licensed outside of Japan and you'll have a very hard time to get them and they are ONLY in Japanese! What I recommended are subtitled by fans for fans and they're for free to watch (streaming or downloading).

I have seen people with it and never knew what it really was and didn't know the name of it either. I knew there were a disability schools and people that cannot focus, balance and coordinate their bodies. I used to think that these people don't understand us. After watching the series, 1 Litre of Tears, I understood more about the disease and how people adapt to it. I also learned that it's a "prison" to those who have it making them unable to do ordinary things in their daily life and even if the disease progressed rapidly, that when they talk slowly or cannot talk at all but use Letter Boards to communicate, they still understand us and can hear us normally inside of them but cannot communicate with us because of this disease. I really am glad that I haven't done anything in my life when I faced these people but I have always tried to avoid them because I didn't know what I should have said (normally people I don't know). I had a friend who were like that and I interacted with them normally like I would with a normal person long ago, I'm glad I did.

If you see someone like that don't treat them as non-humans or try to speak slowly to them and especially don't make fun of them. They can hear you very well and they can feel your presence surrounding them.

If you have it definitely don't give up. You can acquire it generically regardless of age (usually adulthood), if your old at age, or if you stress you mind and body too much with bad things (yelling, screaming, depressed a lot, sad a lot, etc) Stress from Exercising is not a bad thing so don't group it together with the bad things and won't cause SCA to my knowledge. Another thing is if someone was physically injured in the back of their head-lower area - that's where part of our brain controls our motor skills.

SCA is still incurable with today's technology and medicine, we can still slow it's progress down with daily tasks, exercising and taking appropriate medicines. One day we will cure it by God's permission.

If you see someone with this disease, do not look away from them! Help them when they need it. Greet them and talk to them like a normal person. They will not have a problem listening to you. There are people out there with this disease and they're imprisoned in their bodies and unable to communicate with us, because of that many people give them bad (or good) glances and avoid them or speak slowly to them because they think they don't understand us. Treat them normally and treat them with kindness ... it's not their fault that they acquired this disease, it's only inconvenient for them.

If you have this disease, don't give up on life! There are things in this life only you can do that others can't do.

I encourage everyone to watch 1 Litre of Tears.
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replied December 8th, 2011
SCA
Hello,

My mother was diagnosed with SCA this week. They have to test her to find out what kind she has. She has been having slurred speech, difficulty writing, and some coordination issues that have slowly progressed since the age of 60, she is 62 now. My identical twin sister and I are 38 without symptoms but I am freaking out. I have a 50% chance of getting this and everything I read says if I get it I will get it younger and more severe due to anticipation. It is bad enough my mom has it, I want to get tested, how do I do that? How much does it cost? Any info would be appreciated.
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replied August 25th, 2014
Hello,

My father at his age of 56 was diagnosed with SCA but we don't know which type it is. He used to drink alcohol to much, I would say like an alcoholic abuser. We don't know whether the cause is genetic inheritance or alcoholic abuse as no one in the family has SCA. Now he has been having slurred speech, clumsy movements which gradually progressed during this year. Currently, I have been suffering from dizziness and some strange sounds in my ears. I'm afraid that I could be inherited SCA from my father if it is due to genetic problems. I have gone for many tests and diagnoses (even taking MRI scan) but doctors could not specify the disease. They concluded that there is a problem in blood circulation in my head. Any advises for my case? I cannot do a genetic test in my country and don't want to live with this anxiety anymore? Any help would be really appreciated.
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