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Hi. Yesterday, I was diagnosed with spinocerebellar degeneration. I was so shocked, I couldn’t hear half the things doctor told me. I really need someone to tell me a few things about spinocerebellar degeneration. Thanks!

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Hello, I know some things about spinocerebellar degeneration, because my mother suffers from it. It is actually called spinocerebellar ataxia. She lost most of her movement abilities, especialy in her hands and legs, and she is in the wheelchair now. She cant speek properly, and her eye movements are affected too. Spinocerebellar degeneration often affects the spinal cord and the cerebellum, and results with movement incorporation. Unfortunately, there’s no cure found yet for spinocerebellar degeneration, but there are some treatments you can try. I know this is not much of a comfort, but at least this condition is slow progressive, so you still have time to live a normal life. Also, a good thing is that your menthal health will be retained. Good luck!
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Hi:

I would love to share my son's experience with you! He is 23 years old and is now in a wheelchair. The onset for Scott was at a early age (5 years old), however, we didn't really know what the diagnosis was until a few years ago. He has only been in a wheelchair for the past 2 years and until then, led a fairly normal life. Can you please let me know what meds you were prescribed? This is my main concern at the moment as he is in constant pain. Please reply...I would love to hear from you.
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HI
My brother has Spinocerebella degeneration. He was diagnosed when he was 20 after many years of us thinking he was rather accident proned.
That was in 1990.. At that time it was very rare and they told us he would be in a wheel chair by the time he was 25 and not alive by 35.

He managed to stay out of a wheelchair until he was 30 and today he is 37. His detereation has been rapid over the later years. But he has never had any medication as the pain releif only makes him dowsy and even less in control of his body. He pushes himself everyday to get up out of bed and at least he can still shower himself in a special chair. Everything takes time and alot of time, but he gets there in the end.

There is no medication that will help. Alex, my brother goes to the gym and it hurts him alot but he does it as building up his musle is important for him to move himself around independant.

Goodluck with finding any meds that can help you.. for now many years we have just had to rely on simple will power and determination.
Cheers
Gina
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I have Spinocerebellar Degeneration too. It is actually a term that describes changes that have taken place in a person’s nervous system. It can have many causes, but things that worsen it are alcohol, cigarettes, metabolic disorders, and vitamin deficiencies. I have difficulties in controlling arms and legs movements, and sometimes I feel imbalanced. I had the first symptom when I was 15 years old, and five years later, I am still coping with it. Spinocerebellar Degeneration is slow and progressive disorder, and I don’t think I will be better soon. It is often called ataxia, because this term refers to coordination problems. I don’t think there is cure for Spinocerebellar Degeneration, the only thing we can do is find and treat the underlying cause.
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Although I am not one of those who is diagnosed with spinocerebellar degeneration diease, I would be honoured to share my information with those who are in need.

I'm rather young at this age, ( younger then all the replyer's ) but I rather take interest in this topic.

The human brain is made up of different parts of the brain. 10% contain the diencephaion, cerebellum, and these parts allow you to move smoothly and freely. Even though this diease progresses slowly, each person thats diagnosed with spinocerebellar degeneration is different, and as time goes by, the diease gets worse, and worse. So far, there hasn't been a single case where spinocerebellar degeneration was fully cured. Other wise, known as. There is no cure for spinocerebellar degeneration.
One who is diagnosed with this diease with slowly walk unstably, followed by having difficulties in walking, and later, inneed of a special wheelchair.
Followed by that, hand and leg movement will become difficult to preform with ease, writting, eatting, and talking will also become a problem.
One day, the victim of spinocerebellar degeneration diease will not be able to walk, talk, move properlly, and sooner of later, wake up.
One who one day won't be able to wake up, is known as passing away.

This diease is very cruel, and can change one's life dearly, and should be taken with attention and care.
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I recommend you watch a movie called 1 Litre of Tears. It is a Japanese movie about a girl who fights against spinocerebellar degeneration til her very last minute. You will get all sorts of information from the movie.
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Spinocerebellar Degeneration is a disease where a person couldn't walk , can't control her/his body , Can't speak properly , etc.
This disease has no cure. Current treatment practices encompass rehabilitation interventions and off-label use of symptomatic medications.
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i saw a really sad movie about a girl who had this disease it was really sad to see all that he had to go trough.
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There is a Japanese drama called Litre of Tears and it is based on the true story of a girl who is diagnosed with spinocerebellar degeneration at the age of 15. I found it very informative and realistic and I think it may help you understand the disease better.
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Hi, I researched a lot about this subject and I will tell you this, this diesease is very cruel and sad.

I watched a japanese drama called 1 litre of tears. You really should watch it.

But anyways, Spinocerebellar Ataxia is a diease which affects the cerebellum and the spinal cord. What happens is that slowly but surely, signals from your brain/cerebellum won't be able to get to your muscles correctly. Its first begins with falling and slipping oftenly. Then, you will have difficulty walking and lifting heavy objects. You won't be able to control your fingers very well as fine muscle movement is adversely affected. Over time, talking, eating and breathing will be difficult. You will have to use a wheelchair and eventually bedridden. Eventually, you will never wake up.

I know this sounds extremely depressing but don't be sad! You still have time left. Live your life to the fullest, keep going to rehab and work hard. There is no time to be depressed. Continue on and live with it. Even if things get hard to do, make sure not to fuss about it. Its a fact of life. So please live your life and keep doing so! Don't let this disease hinder you.
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My wife has cerebellum degeneration since 1977 and has been in a wheel chair for the past 25 years. We live in the Raleigh, NC. area and have not met anyone else with this illness. She was origionally diagnosed with MS because MRIs did not exist in the 70's. A treatment that has helped her conciderably is IVIGG that she was perscribed by the Mayo Clinic in Jacksonville, Fla. She does a lot of speach and physical therapy which has been a big help. She and I both suffer from depression and there is very little research being done for this illness.done
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Hi, My name's Julianna. I am 16 years old and i am a sophomore in highschool. I recently found out that i have spinocerebellar degeneration disease about 2 years ago. My first symptoms were falling a lot and i would have a hard time reaching or grabbing things. At first, i thought maybe, that it was because i didn't have my glasses at the time so i pushed it off. Then i noticed my balance going off a bit. I walk kinda funny, and because of it, i am looked at all the time or being talked about constantly. The other day, i saw someone farther along than i was. She could barely talk and her hand movements were jerky. When i saw it, i knew i would be like that someday. Sometime's its really hard though and i end up crying. Only because i wonder why god gave me something that couldn't be cured. I'm almost at the point where i will need a wheelchair soon just too get around. I work hard in my therapy and i aim to live past 40. My bestfriend has been there for me since day one and so has my family. they support me in everything i do. For everyone that has this disease, don't give up. Even if it maybe hard, keep going. There are plenty of things to live for, to strive or. Don't ever tell yourself you cannot do anything, because you think this disease has stopped you. Do not give up. Thanks.

-Julie
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Hello. My name is Richard and I would like to share my story. I'm 56 years old. I'm married with 3 wonderful sons (33, 30, & 19), and a 3-year old grandson. In 1972, while in the US Navy, I was diagnosed with Variant Charcot-Marie-Tooth disease with Spinocerebellar Degeneration. What a shock! I thought to myself, what the heck did that mean? As far as I knew, I was perfectly healthy. Just a little difficulty with my feet. After all, I was very athletic in sports, keeping up with the best of them. So, a Neurologist at the University of Pennsylvannia told me I would be on crutches by the time I was 30. At the time, I was 20 years old. Well, I was in denial. I just could'nt believe it.

The Neurologist suggested I go back to college and further my education and use my mind for a living and not my hands. I took that advice. After leaving the service, I went back to college, got my Bachelor's degree in Engineering and a MBA degree.

Well 30 came and went with virtually no change in my physical condition. I still felt great. I continued my successful career as an Engineer. I continued playing singles tennis as much as 2-3 times a week.

Then, around 45, I started to notice an increasing problem with drop-foot and my gait, including balance. BTW, I always had week ankles. I had to start wearing ankle braces during tennis so I would'nt sprain my ankles.

Then around 2 years ago, at age 54, I saw a Podiatrist to have a Taylor's Bunion removed from the outside edge of my left foot. The surgery did not turn out well. When I awoke from surgery, the Doctor told me instead of scraping the bone, he cut a "V" out of the 5th metatarsal and inserted a permanent screw. I didn't like the sound of that. Well, recovery took me from bed, to a wheel chair, to a walker, to a cane, which I can't shake and still use because I can't put 100% weight on my left foot. Now, my condition is worsening because I can't play tennis and exercise. One year ago, at age 55, I fell on a marble floor, while walking with the cane, and broke my left hip. That resulted in a total hip replacement.

Three months ago, I got fitted for leg braces, i.e. custom shoes, with metal bars up to just below my knees. That has provided some pain relief and stability with walking.

Today, at 56 years old, I have difficulty sitting too long, standing too long, and walking any reasonable distance. Muscle fatigue is a problem in just about everything I do. But, in any event, I've had a wonderful life, a rewarding career over 30 years, and have a wonderful family. I'm now seriously considering taking a medical retirement. It's getting too difficult to work. I'd rather be spending my time doing as much physical therapy for my body as possible.

Enough rambling from me. Thank you all for your insightful comments. I wish you all well. I encourage you to live life to its fullest. Think positive and focus on what you can do and what you can achieve. Aim your sights high. You may not ever reach your goals, but you'll achieve much more by trying.

Take care.

-Richard
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Greetings everyone:
My name is Haneefa. I am 53 years old. I will tell you my story. But first I want to say that there are over 20 different types of spinocerebellar degeneration from mild to severe. So everyone does not end up in a wheelchair or with a shortened life. What is mostly written on the internet and in most medical textbooks is only one type of SCD and that is Freidrich's Ataxia which begins in childhood. I am very happy to find this forum today because since it is a rare disease, there is not much information available and I have felt so so lonely!

My neurologist diagnosed me with spinocerebellar degeneration in 2003 after four years of going from doctor to doctor and three neurologists who basically told me my symptoms were in my head. He noticed that my spinal cord was thin in my neck near the base of my brain. At first he had diagnosed me with primary progressive MS because I went from walking 2 miles a day, to using a walker to being in a motorized wheelchair in four years. The main symptoms began in 1999 when I had difficulty walking up curb cuts or getting over the hump in the middle of the street (basically any inclines. Then it went to a difficulty climbing stairs because I do not feel the placement of my lower legs and feet. One day, my legs gave out but I didn't fall, I just used my walker to drag my legs along until I could find a place to sit down. I asked the first neurologist for a wheelchair which at first he said that he would give to me if I promised to keep walking! And then he decided not to give it to me! Part of the problem of it taking a long time to get a diagnosis, was that I did not know at the time that I was heat sensitive. Meaning that all of my muscles get weak when I'm overheated or overtired. Doctors' offices are air conditioned so I could walk the 300 feet in the hallway with little difficulty. Actually, I still walk but as others in the forum here have written, the pain and fatigue can be awlful. Montel Williams said he has burning pain 24/7 that almost drove him to commit suicide. So do I, and I do not know how I get out of bed every morning, other than the pain is worst laying in bed and trying to sleep. If I stay busy there is distraction from the pain. Just sheer willpower, as someone else in the forum mentioned. My neurologist said most of my symptoms will be like MS but I do not have MS. With MS there is using problems with memory and there are attacks and deteriation. He said my condition has stablized and even gotten better. He has been very good to me providing me with baclofen which helps my walking, writing, speaking, swallowing and using my arms to feed myself because otherwise they would jerk too much. He also ordered a sleep study test and treated me for sleep apnea which greatly improved my memory. I also take Provigil which helps alot with energy and alertness otherwise I would nap most of the day. He also okayed a customized wheelchair which has allowed my independence -- -- my own apartment, going to college and hopefully returning to work. Anyway, as someone else said living a full life. There is hope and help available when you find a doctor who really cares. He and my primary care doctor pulled together a team of specialists for me.

I have worked on healing myself emotionally, physically and spiritually. I had vitamin and mineral deficiencies such as Vitamins D and B-12, potassium and magnesium for which I take supplements. I use homeopathic remedies. Looking back, I had symptoms as a child always falling, often having to stay home because I would fall on the back of my head. But this stopped when I was 7 years old the only exception was a friend teased me for not picking up my feet when I was in high school. I also got shin splints with running. Never having a sit down job, I would get fatigued easily and it took me longer than my co-workers to complete tasks. From 1994 I began having severe chest pain but tests only showed an abnormal rhythm here and there. One symptom of Freidrich's Ataxia can be heart problems over time, but can also precede the other symptoms. In 1997, I has spells of losing control of my bladder and briefly with climbing stairs but then these symptoms went away. I was even walking walking 4 hours up and down hills in Africa without problems until late 1998 when the chest pain and difficulty climbing stairs returned where my legs felt very heavy half the way up the stairs.
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