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Ataxia Support

Hi to everyone

I am Aliona Stoian is 25 years old (born on 1989/03/07) from the Republic of Moldova, Chisinau.

My mother died in 2008 and i has't never met my father. I have only my grandmother as a relative.

My benefists from a disability pension of up to 1100 lei (or 78 $; or 57€), i live alone in a room inherited from my mother.

I am suffering from Spinocerebellar Ataxia Type 2 (SCA2)

The disease manifests through the disorder of the body’s balance, which creates me many difficulties, because i cannot walk normally on my own . My walking is instable and i am often confused with an alcoholic or under drugs. Because of my instability it is dangerous for me to do any activities in my own house.

Another problem is the paralysis of the tongue, which produces me great difficulties in speaking.

I am using many vital medicines that are very costly and can be bought only from Russia. Without these medicines i am under the risk of ending up in a wheelchair in a very short time. I cannot take the public transportation,so when I need to go somewhere only to taxi.

I feel shame to go out of my house because people around me make fun, addressing to me with sharp remarks “So young and already drunk” in the middle of the day. They do not realize with how much difficulty she keeps her balance and goes out of the house. She went to many clinics and hospitals from Chisinau but our doctors don’t even know how to treat this disease. That's why i think i need to go abroad to a good specialist.

My words: “I thank God for the people who love me, for the people I have met, for all the big-hearted people. I owe them the smile on my face and the joy to live because they taught me to love life and accept it as it is and not to forget to dream, to believe…that I will make it, that it is possible…”(sorry for grammar mistakes)

Welcome Ailona,

This group of people understand what you are going through. You will find much information here.

Hello Ailona, and welcome.

We all understand very well what you are going through, and hopefully you will find information, and support here.

We are here for you, hang in there.

You are not alone! But I still feel sad that you feel like that. Since we all have lot's of different forms of this ataxia we all do have to deal with allot of the same issues. That is why sharing is so helpful, and I think that is wonderful that you do that! Just knowing your not alone helps doesn't it?!

I'm not sure if your using a cane or not but that would let other's know you have a movement issue and your not drunk etc.. But I think so many of us feel funny about how other's see us at times whether that is true or just our perception, we all go there sometimes too!

Is there a support meeting you could go to in your area along with talking with others on this site? It might take some investigation to find one even if it's for MS or Parkinson's etc. People that also have movement issues you can relate to, might help give you some idea's and over all make you feel your not alone! I think there is something really good about seeing other's that have movement issues also like we do, I know it helps me, and relating to them on different levels. Not everyone as you know knows about this ataxia. For me if someone says something, if I can, I use it as an opportunity to let them know about ataxia. Mine and other types! They usually stop in their tracks. Because you know something different than they know.

But please don't let other people tell you how to act or isolate because of them. All to often I think we all let other's have too much control over us.

I have Sporadic Spinal Cerebellum Ataxia, which means it may have jumped a few generations they don't really know how I got this. I think it's from Toxin's, being a Hairstylist. I know for me arming myself knowing about other types gives me strength to tell other's. Plus the back up of my Higher Power. encourages me to look for people to tell about this disease. The more people learn about this I really believe there will be a cure someday soon. At least that is what the NAF research Dr.'s mentioned at the convention. Also, there is a NAF Convention coming up this March. I don't know if you have ever gone to one but they sure are helpful. You meet allot of other ataxian's just like yourself and there are lot's of Dr's there you can get information from there.

When you get a chance check out National Ataxia Foundation to get more information and even submit an application for a grant to go there. www.ataxia.org

Hello Aliona,

My name is Caitriona, I am from New Zealand. You have been dealt a horrible hand in life but you remain so positive. Good on you, that's wonderful. Positivity is what gets us through.

I was diagnosed with CSA2 also. It was just my balance but recently my writing/typing, and speech have been affected.

First - don't get frustrated with your doctors because they don't know how to treat ataxia. These are progressive and incurable and there is no standard of treatment anywhere in the world. Going abroad somewhere is not going to help.

I know for myself I have started doing exercises that work on my balance and it seems to be helping. I stand on one foot (an inch or two off the ground and I have something near to grab if I need it). I also try to walk heel-to-toe (I use the hallway). I injured my knee but as soon as it is completely healed I am going to try Yoga.

I have also been doing timed typing tests and practicing writing. I have also been reading out loud. I don't know if any of this is working, but I'm not ready to give up. I figure I may as well work on the things that are wrong. It can't be worse than it already is and maybe it will help.

We all have heard the remarks of "being drunk". I usually just say I have a health problem that affects my balance, if comments are within your earshot. If they're not people, unfortunately, have not learned that they need to get the facts and not assume because they're usually wrong.

Keep your faith and we are here if you need support or if you have questions.

Hi Aliona,

I totally agree with Jeanne B.

I know what you mean about people thinking that you're drunk. That used to really bother me at first. I saw a T-shirt I was going to but that said "I'm not drunk, I have ataxia!" but that would only cause more questions. Most people "don't get it" anyway so why bother trying to explain?

Me and my rollator just go on our merry way. Most days I have a smile on my face.

I may have ataxia---but it doesn't have me!!!

Hello Aliona,

Welcome to the Ataxia Support Group Community. I won't pretend to stand for everyone here, but when I first came in, I was warmly welcomed too, and I felt relieved. I did not feel relief because I could finally get rid of this annoying condition, but relief because it was/is nice to feel that you're not weird or clumsy; there are others around the world like you-you're not alone.

When I was first diagnosed, I could walk without aid (cane, walker, wheelchair, etc. , , ,), so when I tripped on an air pocket and fell (sometimes on someone),I was very self-concious and, I'm not sure if it was just paranoia, but I heard snickers and the word "drunk" used around me. In one of my classes (I was in college), I saw a girl who carried a cane that folded. I don't know if this kind of thing can easily be found where you are or if your finances are ok with this, but these canes are not too expensive and end up being really practical. Carry it visibly when there are people around and when they see you with a walking aid, the snickers and whispers around you should stop and you will probably feel less misunderstood. There is also the fact that if you find yourself in a dangerous situation where balanced walking is imperative, you just unfold the cane and fold it and put it back in your purse when you're done.

I hope this helps a bit. When you come face-to-face with a problem caused by this annoying condition (there's always someone whose state is worse), just ask. Although Ataxia is uncommon, there are lots of tricks and solutions come by someone to get by.

Keep a smile - my mom told me when I was an emo teen, that, if you're wearing a smile, others will see it and smile back and you'll feel good and you'll want to share it and you'll smile and , , ,

My dear Aliona, its a real pleasure to meet you! My name is Maggie and my daughter Joey who is 23 suffers too from Ataxia. i can understand how you feel, however you need to stay strong and forget whoever makes fun of you! Poor people… A quick advice is to try to exercise as much as you can so that your muscles are kept strong and help you be a bit more steady. Try involving yourself in a hobby that keeps you busy. Dont even think about shame…you sure are a beautiful young woman and you must keep strong! I know its not easy…but here we are for you! This is a great group of people who are dealing with ataxias! Its great sharing with you! Keep us posted on how you are doing! We love you! Big hug!

Dear Aliona, A HUGE welcome to this site! There are truly wonderful people on here that can offer support and understanding! You are NOT alone in your journey! HUGS…, ;o)

Hello Aliona...........My heart feels your pain of what you have to suffer with. I am so sorry Aliona that this disease is what you are living. I to live through this also. I want to let you know that it does not matter what people think when they see you out of your home.
We are special in more ways than they know. We have more time than they do to think about how we need to treat people. We found in our family that our ataxia is hereiditary. I first came down with it in 2010 then my sister two yrs younger and now my brother 4yrs younger. My sister 1 yr older and my older sister 2 yrs older are both fine so far. It is so unreal this is happening. I have it in my mind that it is what it is and no one will be able to help get any better. It is what it is and it will never get any better. I refuse to go to doctors so they can charge me all the time for something they can't fix. I do go once a year just so they record my progress. Who knows if someone may find a cure. My sister and I try to be in a possitive way about everything.

We both have cerebellum ataxia and just in 4 yrs time I now walk with a wheel walker to get around. I have had many falls and many other problems with this problem. I tease that I have become a big problem child. (laughing) I just I would say hi and mention to you that lifge is still fun if you make it that way. I am kidding around all the time just to avoid talking about the problem. You see..........I want a happy life not a sad feel sorry for me life. That is not me. You are so young yes you are. But the choice is ours to make. Happy or sad. I love happiness.

You can become the person you want to be with this problem. Make your choice and stick to it. No one usually likes sad people to be around.

There is so much on this issue to discuss but the most important is to be happy.

Will

write more another time I can only write how I feel about my feeliings. What thoughts do you have on his issue? Would like to know

..

HEAD-UP!!!

hi Aliona,

i also have SCA2. I live in Brooklyn, NY. i am 57. i am hopeful there will be a treatment soon. my husbands grandfather was born in Moldova. i too have been thru the scrutiny of mean people who said i was "high" or "tipsy". i'm not paying attention to them. most people don't understand. let's focus on ourselves. praise and blame are the same. be well and keep fighting.

lorraine