Yeah..........

Yaya!  I actually bought a laptop this weekend.  I have wanted one for so long and now I finally have my own.  I don't have internet yet, but I will be getting it soon.  Right now though I just borrow other peoples' connections.  Hey, if you have an unsecured network, there's no one to blame but yourself.  I also bought a little desk to put my laptop on.

I am addicted to those floppy hats this summer.  I have a black one and then I just bought a beige one.  I like em because the brims are so big that they keep the sun out of my eyes, and my face for that matter.  They are cute too :)  The problem is, this year has been exceptionally windy, so the hats blow off real easily.  Speaking of wind, it's fricking crazy!  It's like the wind has not stopped since March.  And I'm not talking about breezes but like 15-20 mph gusts.

I've been practicing curling my hair.  I kinda like the look actually.  The more I do it, the better I'll get at making curls.  Cuz I use my flat iron so......

Memorial Day was fun.  A few friends and their kids and I had a picnic in the park.  We grilled hamburgers and hotdogs.  The kids played with bubbles as well as on the playground.  There were so many bees!  After lunch, we went over to the pool for awhile.  The weather was nice.  I got a little bit of a tan.  It was more of a kiddie pool with sprinklers and things.  I enjoy playing with the kids.  They love me anyway :)

Praises Everywhere!

I am just SO thankful for my life!  I will never take anything for granted.  Speaking of taking things for granted, I used to take many simple activities for granted, even walking up and down stairs, just like most people do, but now that I can't do those things like the average person, I've realized I need to cherish life that much more.  Nobody purposely takes these things for granted, but once those abilities are gone, everything just becomes more clear.  I see having a disability as making me more mature in several aspects than the average person my age because I have to deal with things that they never will. 

I praise God all the time on what he has done for me.  Look at me, I've had ataxic symptoms continuously for 11 years and they have hardly progressed; just a bit worse.  He's also kept me healthy and thriving in this world.  My ataxia is totally not God's fault.  And anyone with ataxia should never blame God.  If you are looking for someone to blame, blame it on Adam and Eve for letting sin into this world.  Of course ataxia is not a sin but because of sin, the world is no longer perfect.  We all suffer, whether it be by plagues, diseases, natural disasters, wars, violence, abuse; the list can go on and on.  All people have their own imperfections, mine just randomly happens to be physical.  But me, I don't blame my condition on anyone.  God let me have this for a reason; a reason I will never know till the day I meet Him in heaven.  I do look forward to that day per say, but it's not like I want it to come anytime soon.  I just look forward to what God has put in the future for me :)

What I Want Readers to Know

I just want to say that living with ataxia isn't really that depressing.  I don't want my posts to sound so serious all the time.  Sure, I have my bad days dealing with it, but having ataxia can also brighten my day.  For example, I laugh at myself when I fall or trip over myself.  And like I said before, having a disability can be advantageous (at the amusement park).  I am a jokster, and with my friends I joke a lot about my condition.  I guess it might be a coping mechanism.  It's not like I never talk about ataxia seriously though.  I know it is a very serious condition.  But I don't want to dwell on the fact of what the future may hold for me.  And I don't.  I know what could possibly happen to me, but I choose to remain optimistic about how my ataxia progresses.  My faith plays a huge role in that.

Quick Cash

I would just luh-luh-love to get arrested for drunkedness so I could sue the police department and get rich!  That's and awesome wish to me :)  The same goes for any business that refuses me service or something because they think I'm drunk.  I know I'm weird like that because nobody wishes to get arested. 

Who Am I?

That question may take a lifetime to figure out but I know one thing for sure, I am not ataxia.  Just because I have this condition and it's easy to identify me by associating me with ataxia, does not mean it defines me as a person.  There is so much more to me than just ataxia, but you'll never know that if you judge me negatively based on my appearance.  I'm not saying all people are like that.  In fact, most aren't.  But there are people out there who are superficial that way.  Everybody has a choice, and I feel sorry for the ones who choose to remain superficial.  Not just superficial, but ignorant as well.  I just don't even deal with people like that.  It's a waste of time, and life is too short to waste time.  I am a fantastic girl, and the people who can see that are the ones I want to surround myself with and get to know also.  Like the age-old saying goes, and believe me IT'S SO IMPORTANT, "don't judge a book by it's cover."  If you do, you'll never know what great things you are missing in your life.

My Golden Ticket

Anytime I can use my disability to my advantage, I'll do it.  I just love going to amusement parks and not having to wait in line.  Especially if the line for a rollercoaster is a mile long!  Most theme parks have special lines for disabled people, so they basically get to skip the regular line and get right on the rides.  It's awesome!  My friends and I get to ride twice as many rides than we would otherwise.  I'm very modest about the situations I take advantage of though.  I would never "cut-off" someone who really needs the special treatment.  I can tell if I absolutely need it for that particular situation based on how my body feels.  But if that special treatment is available, why not take advantage of it?  And it's not like I'm faking anything, because I really do have a handicap.

The Aftermath

My balance and coordination have remained fairly stable over the years.   I had an MRI in 2010 and, after comparing it with the 2004 MRI, my cerebellum has maybe shrunk 1%.  1% over 6 years is damn good!  ok, I'm not exactly sure it's been 1%, but the point is, my cerebellum has hardly gotten smaller :)  I attribute that to the vitamins (COQ10 and Vitamin E) I take and the exercises I do. Of course my symptoms have gotten progressively worse over the years.  That's what comes with having degenerative ataxia.  But I still live a very normal life considering.

Let me give you an idea of what my symptoms are like today.  I can't walk down more than 2 stairs without holding on to something.  Walking up stairs is a little easier for me, but it's still better if I hold on to something to ensure I don't lose my balance and fall down the stairs.  That would not be good.  A lot of outdoor activities, like sports and hiking, are a no-no for me.  This is because my muscles work harder than most people's, so I get exhausted faster.  Who knew that running required balance?  Not me.  Yeah, I figured that out first-hand when I tried.  Obviously any activity that requires balance I can't do normally, such as rollerblading or riding a bike.

My walk is probably the biggest symptom I have, since I walk all the time.  My unsteady gait is noticeable.  I'll walk straight for a little, and then OOPS i'll lose my balance.  So sometimes my gait can be quite zig-zaggy.  Since my equilibrium is not centered, I will sometimes walk kinda diagnally as opposed to straight in front of me.  My gait also reflects how I feel.  The more refreshed and stronger my body feels, the straighter my walk.  When I'm tired or sad or on an empty stomach, the more scattered my walk.  I would really like to videotape myself walking, so I can see for myself what it looks like.  My friends tell me it isn't that bad when I ask them, but I would still like to see for myself.  Don't assume I'm all over the place when I walk, because that is just not the case.  I may be unsteady on my feet, but that doesn't mean I am like drastically shaky or having spasms or whatnot. 

Speaking of friends, them and my family are really supportive.  My friends more physically supportive and my family more emotionally supportive.  Mentioning that made me think to let people know, ataxia is purely physical.  Nothing is wrong with me mentally. No learning disability and my reasoning skills are perfect.

Back to my support system.  If I'm hanging out with my friends, they have no problem helping me do certain things.  In fact, they even offer sometimes!  It's like second nature to some of them.  They just know and are willing to help.  I ♥ my friends.  My family is great!  They are there to talk my head off (lol) and keep me grounded.  My dad really likes motivational speaking, so I always get to hear what he has to say about my condition.  My mom is just there for me whenever I need her.  She comforts me when I'm having a bad day, etc.  I'm very grateful.  My brother has ataxia too (and is engaged and has a daughter) so we share some things in common.  I ♥ my family.

I can do all normal daily activities by myself, maybe a little slower than most.  I can drive (I have a handicapped placard for first class parking spots!) and I hold a steady job.  I am going to school right now to obtain my paralegal certificate so I can officially be titled a "paralegal" at work. My handwriting is somewhat sloppy, but it is legible.  My speech is normal.  Sometimes even too loud.  My coordination sucks!  Don't toss me a tennis ball...lol. 

Come to Find out....

As a child I did various sports, gymnastics, and all kinds of outdoor activities.  I had a very active childhood! I began to notice something was 'off' about me my junior year of high school.  I needed to hold on to the rail when going down the stairs at school to keep my balance. I didn't think anything of it, and neither did anybody else.  So I just ignored it, thinking it was a phase and would go away, and went on with my life.  

A few years later, though, my symptoms started to get worse.  It became more difficult to do the things I did as a child, like simply run.  My walking also became less straight and more scattered.  I started to become concerned and in 2004 went to the doctor.  He did a little exam on me, observed my gait, and requested I have an MRI.  And so I did.  The MRI showed my cerebellum to be at a smaller capacity than should be.  The cerebellum is the part of the brain that controls muscle movements as well as motor skills.  This is how I was diagnosed with ataxia.  The doctors ran blood tests on me and both my parents.  Neither of them have ataxia.  However, the blood tests showed them both to have the recessive genes.  This is how it became known I have hereditary ataxia.  This means I was born with the condition, but onset was later in life for unknown reasons.  I am just thankful to have had a 'normal' childhood.

What is it?

Ataxia means clumsiness of movement or loss of

coordination that is not the result of muscle

weakness. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. The word “ataxia” might be used simply to

mean poor coordination, or it might be used in a more

specific way to denote a degenerative disorder of the

nervous system. Ataxia may affect the fingers and

hands, the arms or legs, speech or eye

movements. This loss of coordination may be caused

by a number of different medical or neurological

conditions.  This is a pretty basic definition of ataxia.  For more information, click here

First and Foremost.....

Welcome to my ataxia blog, where I come to share my thoughts on ataxia and my daily adventures (struggles and successes) living with the condition.  I am not going to write everyday because frankly my life isn't that interesting, even with a disability.  My main purpose in starting this blog is to inform others about ataxia because it is such a rare condition, I am sure many people don't even know what it is.  I will also share other events as they unfold in my life, as long as I feel they are noteworhty...lol.  Anyway, I hope anyone who reads my blog enjoys and appreciates my posts, as well as perhaps learns a thing or two about ataxia becuase this condition is a part of my life now.