Spinocerebellar Degeneration

bernetta · Silver Member Joined: 04 Sep 2000 Posts: 303

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!

bucholz · Newbie Joined: 24 May 2005 Posts: 17

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!

Sherri · Newbie Joined: 30 Aug 2006 Posts: 2

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.

Guest · Guest

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

leibold · Newbie Joined: 31 May 2005 Posts: 16

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.

Guest · Guest

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.

Guest · Guest

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.

Spinocerebellar Degeneration

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