I was diagnosed with it too, these are the simton. very bad hearing and it gettingg worst, bad balance no sex diive low motavation i feel sleeply most of the time. please tell me what you find out about it cause no one will tell me anything
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There is this japanese movie called 1 litre of tears . It is about a girl who has been diagnosed with spinocreberall disease and that girl kept on living life to the fullest . I recommend it because it is very inspiring and will give you a lot of courage :D
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since i watch the japanese drama 1 litre of tears my view of life has been change i want to be a doctor who can cure this disease so the people who suffers from it can be freed from their pain and continue living normally so please wait for me to graduate in my high school and medical school so that i can help you and i dont want to failed you all ill do my best even im miserable of what happens to ikeuchi aya if only im alive when she is suffering
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i watched a drama about that kind of sickness... just wanna know.. did you survived? i know it's a very rare disease... i hope you're still alive... live life happily/.. life is full of happiness.. don't be sad if you was diagnosed by that disease.. live life okey! dont lost hope..
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I only learned about this disease by watching "One Litre of Tears", a Japanese series. It's based on the true story of Aya Kitou, a 15-year old girl diagnosed with Spinocerebellar Degeneration. You will slowly be experiencing difficulties in walking, talking, moving. If you try to grab something, you won't be able to know how far the object is. There are possibilities of you losing eyesight. Its like you had a stroke. They said its hard to have this because it will feel like prison -- you want to walk, but can't force your legs and feet to do so, or you want to speak but won't be able to move your tongue. :(
I hope you get well. Don't skip therapy and medicine. Keep the faith! ü
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I do not have much information of the question you have asked but there is a Japanese film and book called '1 Litre of Tears' and it is all about a young girl that finds herself with Spinocerebellar Degeneration and it is such a heart warming film. I just thought that it may be good for you to watch through if you ever feel down because of what you have (: I wish you the best of luck and no matter what hardships you may face, over come them with a smile and stay strong <333 (:
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Hello - I'm sorry to hear about your mother. I have some questions for you and I'm hoping you might be able to help. My x husband and father of my two children has been diagnosed with spinocerebellar degeneration. He did not get a "genetic specialist" to confirm this however. It certainly does look like he has it though. How did your mother get diagnosed? We live in the northeast and are having problems finding a genetic specialist to give him a firm diagnosis. Also - I am soooo worried about my children inheriting this disease I can barely function. What do you know about the inheritance? I know there are many different mutations and without a firm diagnosis we are so in the dark. My x husband has a distant uncle who possibly had this and an uncle who had lou gehrigs disease as well - but they have already ruled lou gehrigs disease out for him. I would think if this was the disease he had, we would see it more prominantly in h is family than we do. I am reaching here and hope you have some insight. thank you
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According to One of litres video. The there is no cure for it. Just to wait for the day to come.
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Hi Richard,
I too live with the disease. It is very frustrating and painful; however, I, like you, try to focus on all that I have to be thankful for.
I recently found a version of exercise/therapy that I had never heard of before. Although, I think I remember using some similar aparatuses when I've done physical therapy for some of my multiple injuries. The exercises are done on what are referred to as "toning tables". If you are interested, look them up on the internet, to see if there are any facilities in your area. Or, you may be able to try some out at a therapy sight...I know you are able to purchase some combination styles for your home. The movements are done by moving parts of the table that move your body in a way that stimulates muscle tone. Your movements are completely passive, until you want to incorporate more activities such as hand or ankle weights or additional movements.
I could not walk without crutches when I first tried this method of exercise. And, I know it sounds ridiculous, but I limped out to my car after just one session. It has only gotten better over the past three weeks! I can walk without any assistance (slight limp), and I am using/awakening muscles that I have not been able to use for years! Somehow the tables force our muscles to do what healthy people's nerves direct their muscles to do. I am thrilled, and just thought I would share. Good luck!
I too live with the disease. It is very frustrating and painful; however, I, like you, try to focus on all that I have to be thankful for.
I recently found a version of exercise/therapy that I had never heard of before. Although, I think I remember using some similar aparatuses when I've done physical therapy for some of my multiple injuries. The exercises are done on what are referred to as "toning tables". If you are interested, look them up on the internet, to see if there are any facilities in your area. Or, you may be able to try some out at a therapy sight...I know you are able to purchase some combination styles for your home. The movements are done by moving parts of the table that move your body in a way that stimulates muscle tone. Your movements are completely passive, until you want to incorporate more activities such as hand or ankle weights or additional movements.
I could not walk without crutches when I first tried this method of exercise. And, I know it sounds ridiculous, but I limped out to my car after just one session. It has only gotten better over the past three weeks! I can walk without any assistance (slight limp), and I am using/awakening muscles that I have not been able to use for years! Somehow the tables force our muscles to do what healthy people's nerves direct their muscles to do. I am thrilled, and just thought I would share. Good luck!
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