Spinocerebellar Degeneration

I was diagnosised 2 1/2 years ago.  I had to retire because of the disease.  All of the other symtoms in the comments pretty well explain the progression.  The issue is what do you do about it.  One of the things to do is use the internet to find exercises for balance and eye movement.  I also started strenghtening exercises by going to a gym 3 times a week.  One of my biggest problems is that I can sleep forever.  This is not my nature and this really broughts me.  I have read that vitamin B and B12 are helpful. Also that a coenzyme Q10 300mg per day helps some people and slows down the progression.  I would be interested to hear from the group if they have had any success with these treatments? 

if im going to be honest, then i must admit that this topic is so cruel. This disease is really not just a disease  cuz its change you whole life through and whats worst with this is that it has no cure. I feel so sympathy to those who had experience this disease. maybe may words is still not enough to understand what you really might feel is but still how i wish to find a medicine to just to help you. for those who dont yet understand this disease, i recommend you to watch the movie one liter of tears cuz it was really base on real life story.

tnx

urmm... always stay strong yupp... :) i know this disease is a very cruel disease.. because it took away our ability of doing things bit by bit... stay strong like late  ikeuchi aya ( a japanese girl who was diagnose with this disease... ) she was very strong and were able  to smile and makes everyone smile and encourage eventhough she's gone.. GAMBATENE!!!! :D

Hi, my daughter is 10 years old and she started to regress at age 8, her speech became dysartheria. She had been running and playing ball and everything most children do. But since age 8 - in 2 years her IQ has gone from 86 to 57, her walk is odd, I have a video of her if you get this and have time to view it. It's only a few minutes long. The changes are dramatic and we're heartbroken. Her MRI showed atrophy of the cerebellar and with the ataxia all the doctors agree it's a type of spinocerebellar ataxia. We're having the genetic testing on Monday. How did you learn your son Scott has spinocerebellar? Do you remember how long the genetic testing took? Thank you - Chris

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bernetta wrote:

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!

spinocerebellar degeneration. has no cure there syntoms that might will shock u because if u have this disease u fall down with no reasons and if ur u will sleep accidentaly and dont wake up like aya htere are five syntoms

Hi, God has plan for all of us. Those who suffer so much will be able to emancipate from ordeals some day. Patience is a virtue.

We'll not really gonna know what's going to happen in our lives. Let's rest our trust on God's palm. All these hardships are about to end. Rejoice! and strengten your faith to God. He'll always stay by your side and will never gonna leave you.

I'm from Philippines and I got to know this incurable disease when the jdorama series was aired here in our country.

Just fight and never give up. In the long run, God will reward us for a job well done. Why? because bearing the hardship is not simple and you'll pass through a lot of onuses. So fighting and winning over it is as great as bagging the first place in the comptetion.

Yes, I know that it's easy to say words because I'm not suffering this condition but I just want you to know that God is always here for us.

Always be inspired to live and do your best. We came in this world for a short visit so don't waste time being depressed!

Smile okay? Live as if you're living in the last 60 seconds of your life!

Just like what Aya Ikeuchi once said "Live on Forever"

:)

I AM TRYING TO FIND OUT HOW I CAN PURCHASE THE VIDEO "ONE LITER OF TEARS".  CAN ANYBODY HELP ME?  JIM

Hello,

Here in the Philippines, you can purchase DVD of that Japanese series mostly from the street vendors . Why don't go to a video store in your place.

Also try watching the said series through youtube. There are several videos from episode one to its ending posted there (I'm not really sure).

Amyways that's a good series to watch for especially for people who have this disease. I cried while watching this one.

-aljon

Hi, i do not have this disease but i have seen the troubles that other people have gone through and i would just like to encourage those who still have them even today, to keep on fighting. We can't let the fact that there is no cure, keep us from believing that there is still hope. As crazy as i sound, i like to believe that its all in the psychology of things. If we really want to get better then the only way to is to believe that we will. Ultimately, only God can heal us in such circumstances. What it comes down to is that we must be willing to trust and put our faith in him and believe that it can be cured. I will keep all those who go through this in my prayers and pray that, one way or another, they will be cured. People can't afford to have such negative thoughts during these critical times so i believe we must be willing to try. I hope you are deeply encouraged by this. God Bless you all. 

TODAY I RESEARCH ABOUT THE SYNTOMS

WELL FIRST, WHAT IS YOUR AGE AND WHAT ARE YOUR SYNTOMS? IS THERE OTHER OLDER MEMBERS IN THE FAMILY WHO HAVE BEEN DIAGNOSED WITH IT? I HAVE HAD IT FOR 3 YEARS AND RUNNING. IF I CAN HELP LET ME KNOW. JIM

maybe the best way to heal this one is through constantly communicating with God.

yeah.. through constatnly communicationg with God, all those obscure things will be illuminated. Just hold on and never give up. Let's  also hope for the development of our neurologists' research. Who knows, by tomorrow, the medicine will be discovered. 

FIRST, COMMUNICATING WITH GOD IS GOOD BUT SOME PEOPLE WITH THIS DISEASE JUST WANT TO HELP EACHOTHER BY KNOWING WHAT THINGS ARE HELPING THEM AND WHAT THINGS NOT TO TRY.  THIS WEBSITE SHOULD BE THAT TYPE OF INFORMATION CENTER.  SO FAR IT HAS NOT GIVEN ME ONE THING TO HELP ME.   JUST PEOPLE ASKING FOR HELP ON WHAT THE DISEASE IS ALL ABOUT.  I AM SAYING THAT WE DO NOT SHARE THE IMPORTANT THINGS THAT WOULD HELP EACH OTHER.  I HAVE BEEN A MEMBER OF THIS WEBSITE FOR 4 YEARS AND HAVE NOT LEARNED ONE THING FROM OTHER MEMBER SIMPLY BECAUSE WE DO NOT SHARE.  GOD GIVES US THE TOOLS TO DEAL WITH ALL SITUATIONS.  IT IS UP TO US ON HOW WE USE THEM.  SO WHAT THE DISEASE CAN NOT BE CURED.  WE ALL KNOW THAT IS A FACT.  I HAVE THINGS THAT I AM DOING THAT HELP ME WITH THE ISSUE.  TO ME IT IS DISAPPOINTING THAT WE DO NOT SHARE THOSE TYPE OF THINGS. SO I HAVE SAID IT AND HOPE SOMEONE READS IT.  JIM