Ataxia freaking sucks

Ataxia has ruined my teen years. I’ve been stopped at school for being drunk and I don’t drink but that was before I was diagnosed with ataxia. I can’t walk a strait line if my life depended on it. Oh I almost forgot sometimes when I walk my knees goweek and knit the floor but on occasion I’m able to catch it and keep my self from collapsing on the ground .
What about u dose any wanna talk or anything?

Go week and I hit the floor*
Sorry my iPhone is being dumb.

I have a genetic strain that started around my teen years, and I was diagnosed at 18 so I have an idea of what your going through. I'm 20 now so I have a bit of experience in that regard. Make people aware when you can, find out your strengths and weaknesses, do balance exercises, and get some oil on those knees, it could be a sign your nerves are getting weak there, like in my case.

I do a bunch of things, like exercising (I should do more, but school gets in the way) get physiotherapy, get others to help me with things, and just stay positive and work with it.



Bobby Kumar said:

I have a genetic strain that started around my teen years, and I was diagnosed at 18 so I have an idea of what your going through. I'm 20 now so I have a bit of experience in that regard. Make people aware when you can, find out your strengths and weaknesses, do balance exercises, and get some oil on those knees, it could be a sign your nerves are getting weak there, like in my case.

I do a bunch of things, like exercising (I should do more, but school gets in the way) get physiotherapy, get others to help me with things, and just stay positive and work with it.

I have neuropathy in my legs and feet witch means my nerves in my legs are bad.

I totally understand what you are going through, I have SCA6 and here recently I have been falling a lot for no reason, I have some testing done on the nerves and muscles on my legs, I think it was called an EMG and I have Neuropathy which is just nerve damage, it is very frustrating, I am having to do physical therapy to try to strengthen my legs. The walking a straight line, well I cannot do that either, I am like a drunk all the time. I just laugh at myself cause there really isn't anything I can do about it, but it is embarassing when I am in stores and I get so disoriented. Do you ever have that elevator feeling?



Cody Shearin said:

Go week and I hit the floor*
Sorry my iPhone is being dumb.

then ya, hot mustard oil, castor oil, and some other oil i cant presently tell you about

Cody Shearin said:



Bobby Kumar said:

I have a genetic strain that started around my teen years, and I was diagnosed at 18 so I have an idea of what your going through. I'm 20 now so I have a bit of experience in that regard. Make people aware when you can, find out your strengths and weaknesses, do balance exercises, and get some oil on those knees, it could be a sign your nerves are getting weak there, like in my case.

I do a bunch of things, like exercising (I should do more, but school gets in the way) get physiotherapy, get others to help me with things, and just stay positive and work with it.

I have neuropathy in my legs and feet witch means my nerves in my legs are bad.

I have the feeling like how you soon and u get dizzy that is the feeling that I have and it won’t go away its moderate dizziness but it throws me off and when I go to walk through a doorway I don’t go threw my shoulder hits the wall.

The oil might work ill try anything

I've never heard of using oil. What exactly do you do with it ?

The mind boggles.You have had a life when you are older but you mourn the loss of certain skills.I suppose there are pros and cons.I can understand your frustration .Not sure I would be able to cope.Identify with all you are saying. A friend of mine with Ataxia got arrested for being drunk before he got into his vehicle.There is a lot of ignorance out there.

I have got used to comments about being drunk.Can see where people are coming from when I stagger out of the toilets at a pub.I am teetotal.

My neurologist told me I should try leg braces and I just got back from the brace person I improved so much I wasn’t walking as bad I had the biggest smile. The brace person ordered me special brasses for my legs and he said it should stop my knee from giving out so easily. I should be walking almost normal Friday. Balance is still a problem but it’s not as bad.

Yes indeed…Ataxia sucks!
One of the most frustrating things we experience is; others not understanding what we are living with (sorry grammar folks). Being accused of being drunk is fairly common with all of us here on this site. My way of dealing with it is to use my cane. It tells people ,she has walking problems, not drinking problems.

It appears you’re in high school? Classmates can be terribly unkind especially to someone who is different. I was teased (bullied) in school and it’s been my belief that almost everyone experiences that kind of treatment while in middle or high school. While you haven’t mentioned it, my guess is you have too. I want you to know that not only does almost everyone get mistreated but it turns out that being popular in school has NOTHING to do with happiness as an adult. And that, Cody, is great news!!

Facebook has allowed me to catch up on where some of the classmates I went to school with have “turned out”. The girl who was the most mean to me has become an old pathetic hag. She was very pretty and popular in school. I was not. The homecoming queen is now a drug addict and lives with a drug dealer. She looks 20 years older than me. Another girl who was very popular turned out to be a prostitute and was murdered quite young. So…being popular isn’t all that.

I’ve made the decision to be as happy and healthy as I can be given my ataxia. I take care of myself by eating healthy real foods, exercising regularly having friends who I trust and can count on and being grateful for every good thing. I hope you’ll do the same regardless of ataxia. You’ll find many people here who will be a great support to you!

Does your school counselor know you have ataxia? It would probably really help if he/she did. One thing that Atxia has taught me is to look at others differently. I know now that many people around me are suffering silently with all kinds of terrible things (abuse from a parent, illness, loneliness, etc). You have ataxia, but it doesn’t have you. :slight_smile:

just rub/massage the area feeling most fatigue, it's temporary relief, but the heat of the oil, with time, somewhat restructures nerves. some people use balming agents like tiger balm as well (most baseball players go that route).

Jill said:

I've never heard of using oil. What exactly do you do with it ?

when i was at university, i fell down a flight of stone stairs and hurts my legs pretty, and i had an exam later, couldn't concentrate cuz of the pain and it happens all the time, i cut my hands on ice earlier. because of high school and how kids can be, this may work more later in life, but stop moving when you feel dizzy and/or have someone with you.

Cody Shearin said:

I have the feeling like how you soon and u get dizzy that is the feeling that I have and it won't go away its moderate dizziness but it throws me off and when I go to walk through a doorway I don't go threw my shoulder hits the wall.

:slight_smile:

I completely understand what you are saying, Cody. Several year ago, when I was more confident, I was just walking to the bus stop to get to uni. All of a sudden this completely random woman pulls her car oven near where I was walking, gets out of the car and approaches me yelling at me and telling me that drugs were bad and I shouldn't take them. I was in a state of complete shock, I didn't even know how to react to this complete stranger who jumped to conclusions about me judging from how I was walking. All I could think at the time was "who is this ignorant woman" and "how dare she".

As for being "drunk"...well I've been thrown out of bars, had bouncers try to "deal" with me etc. I was also threatened with the police at a UNSW bar for "public intoxication" despite the fact I actually had not had anything to drink that day and I was placing an order at the bar when the charming bartender called intox (slurring, gait and I was leaning against the bar). Eventually I stopped going out and if I did I would always have my husband/mum/dad/sister accompany me, or a good friend who understands what's going on.

I am a fan of house parties and throw them alot. For one the food/alco is cheaper and there's noone to make you feel crappy about yourself.

But high school is cruel and extremely efficient at destroying self-esteem and making you feel frustrated and helpless. The only thing I can advise is keep your chin up and make sure the school is offering all the support and making appropriate allowances for you. The staff can make things slightly more tolerable. What grade are you in, if you don't mind me asking?

S

I feel for you Cody! I'm many years older (59) than you, and so are my children (28 and 31). I was diagnosed with ataxia 10 years ago, so I do know how you feel symptom-wise. I find that exercise for strength and balance helps my ataxia, as well as walking (holding on) on my treadmill. I use a cane when I leave my home to prevent falls. I also carry a card in my wallet (written by my neurologist) that explains about my ataxia, in case I get stopped by the police. My balance is really compromised and I slur my speech, so I couldn't walk a straight line either, and when I talk, I sound drunk! Ataxia is very frustrating as well as challenging! That's great the braces will help you! Try to be as positive as possible, because although you can't control your symptoms, you can control your attitude. Never give up or give in, as ataxia doesn't define who you are! This site is great for support, advice or just to "vent", as we all understand! ;o)

I am now homeschooled but I was in 10th or 11th

I can’t stand for long without falling. I can walk and not fall verry much but I’m all over

Ah, I feel for you, I really do.

I found if I allow myself the option of "the easy way" I will depend on it and not be able to function without it. This is the main reason why I don't use walking aids (even though I really should, it would save me some painful falls). Exercise, as painful and sometimes humiliating when compared with the regime of others, will help keep what you have for as long as possible. Cliched and sometimes want-to-throw-back-in-your-face this advice is, unfortunately it's true.

Keep trooping. :)