Ataxia UK
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Cerebellum atrophy

Hey am a 24 yr old lady I have cerebellum atrophy which affects my walking nd writing. So I don't have balance when walking nd I need someone to hold me when walking, I also shake (twicthing) when I stand for too long or when am walking too far.. I have been living like this since I was 12yrs old nd it has been getting worse ever since so I don't have a social life at all am just at home all day with my laptop, tv nd phone...

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Hey Chunguuz,

Welcome! I have cerebellar atrophy also. It sucks! But it's not the end of the world. I advice you to be active as possible. Don't stay at home all the time and don't be alone all the time especially. It's not good for your mental health and will bring about depression and anxiety. Also keep your mind active. Read. Alot. Anything and everything. Read all the books you can get your hands on. And please don't use your phone and laptop all day.

If you ever need to talk, feel free to drop me a message.

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Thanx 4 de advice I will try to read nd I am on my laptop coz I study online

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Nice. What do you study?

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Computer programming

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Cool, what languages are you learning?

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html,Css and javascript

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Ah, web development. So you want to build websites? Cool.

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yeah

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Very good reply, so easy to get depressed. Great you doing course though.

Although very hard you need to try not to focus on lack of social life - we are very lucky those who have partners who have stuck with them.

I find reading quite hard so I prefer audio books x

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try to stay active as hard as it is.

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I’ve always been a voracious reader but now I can only read for maybe 15 minutes then I start to fall asleep...it sucks

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Ask your doctor about 4Aminopyridine

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Chunguz, you have a big challenge and have had it half your life. Everyone reading your message will be feeling a huge amount of empathy for you. Problem is - we're all getting it at different stages of our lives and to different degrees. And we probably have different types and causes. Geneticallygeneric is sensibly advising you to limit your use of the screen machines and get active. You have a big balance problem walking. Can I ask what may turn out to be a silly question - have you researched balance improvement websites on your laptop? Getting more from the residual cerebellum can be achieved by working on the balance exercises. It's getting the brain to work better with less. Same principle as learning how to kick the ball in the air multiple times. If you can just get your walking better then you start the daily walks - good physically and mentally for you. I'm into a strict regime of exercise (including that daily walk), the right food and lots of water. You'll be getting depressed. Who wouldn't in your position. But just like they say for depression - get off the bed! so you must try your very best to get out and walk. I do five minutes a day standing - I should say wobbling - on one leg, then the other. I hope that is of some use to you.

It came as a shock

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Hi yes I have tried to research balance improvement exercises on my laptop but it's hard to do them coz I can't jump, stand on leg or walk properly or else I fall. Am not complaining or anything like that am just simply saying it's hard for me anyway yes I walk about ten rounds but in the house when I get stronger then I will start walking outside but am never giving up and I will keep on trying.

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Hey how are you

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"I will keep on trying" sounds good, Chunguz. I don't know how severe your balance problem is, and therefore what you can build from. But even from the tiniest core the brain can be made to do amazing things - through repetition. I couldn't stand on one leg either but over time and five minutes a day of repetition (for you that might have to be 30 minutes a day) I built up from nil to one minute on each leg. Fierce concentration on a fixed spot ahead helps. Always a wobble but it translated into improved walking. Perhaps you've tried that approach. If you haven't, then please start - from one second to two, and so on. Then report back to "the team."

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Thanx do u have any exercises u can share??

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I can't find the website I located around 10 months ago but standing on one leg with variations on the theme seems to be common to many websites. It depends on how balanced you are on two legs whether you can progress for even a second to balancing on one leg. You may have to browse the sites and try what suits you. But what seems to help very considerably is the one leg balance, with increasing complexity as you improve. It is basically getting the remaining neurons in the cerebellum to work more efficiently. However tiny the initial achievement, improvement will come with repetition. Good luck.

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Thanx

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Hi I’m Matthew I’m 21 and I’ve got cerebellum atrophy too how are you

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Hi am fyn thank you given the circumstances nd hw r u doing??

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Getting out is fun. I visit local history society talks. Their venues are nearly all accessible, only one has defeated me, Sedbergh's Settlebeck school. Unfortunately, initially their leaders do not know where the ramps and outside light switches are. And everyone knows my name! You can not hide, many people offer to help, short of carrying, their is little they can do. A useful side affect of disabled access is to unlock a fire escape. No longer will the audience be burnt to a crisp.

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Hello I am68 and have recently been diagnosed with Cerebella Atrophy, I too have symptoms like you. The Physio has given we two walking sticks but my coordination isn't good so I struggle

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