Breaking News

Car update:  the fan that cools the air has stopped working so the shop is going to replace it.  They found nothing else wrong with my car so that shutting off thing must've been a one-time glitch.  I also told them to go ahead and do an oil-change since my car is already there.  I'm not for sure if I need one yet, but in this weather it's a good idea to keep on top of things, especially since my car is my lifeline.

Doing Better

I am physically feeling much better today.  Not as weak as I was yesterday but still a little lethargic.  I just need to get back in the habit of eating regularly to replenish my body.  And drink lots of fluids because I've also been dehydrated.  I get that way sometimes too.


In other news, my car is broken =(  The air conditioner just blows hot air now and the car just dies after it is in idle mode for a few minutes.  I'm taking it to the shop tomorrow to find out what needs to be fixed and how much it will cost :/

Blank

I am having a really bad 'disability' day today.  I don't know why some days are better than others.  But today my walking has been all over the place.  My balance seems to be the only thing affected on days like this.  They don't happen very often, maybe a few times a month.  But days like these make it hard to get through the day.  I mean, I'm bumping into walls, walking more zig-zaggy than usual, and my leg muscles just feel fatigued.  I didn't have a busy weekend at all.  I just relaxed and hung out.  So that is not to blame.  I even fell at lunch today; i tripped on a chair :(  Nice thing is, like four people came over to help me and make sure I was ok.  Man, sometimes I really am in disbelief I have ataxia.  I have class tonight but because of the day my body is having, I don't even think I'm gonna go.  The more walking I do, the more likely I will fall.  Especially on days like this.  I'm glad I have a desk job...lol.  I am just thankful my bad days are few and far between.  But when I ponder the situation, I'd rather have these kind of days than go through the things some people have to deal with.

Truckin' Along

People may beg to differ but I feel I have totally accepted my ataxia.  Without treatment I will have these symptoms the rest of my life and that they will get progressively worse; it's only a matter of time.  With that said, I do not by any means give up on improving my body and fighting the ataxia.  There is no reason to give up just because you have a chronic condition.  Like I always say, nobody knows what the future holds.  Why not be optimistic of treatment?  There are medical breakthroughs everyday.  My life has not been easy since I was diagnosed with this condition, but I will never give up til the day I die (and then I will be in Heaven where everything's perfect).  I think the main thing I can do right now is do anything I can to slow down the progression of my ataxia.  And I think what I've done the past 6 years has helped because my two MRIs show maybe like a 5% difference.  So I'm just going to keep doing what I've been doing and continue to check-in with my neurologist once a year.

Bummer :/

Although I got to rest all day Sunday,  I did way too much this weekend.  My legs still feel like jello :(  I was literally on my legs all day Saturday playing with the kids at the pool and then going dancing that night for almost 5 hours..  Don't get me wrong, I had a blast, and I would never sacrifice having this much fun because of my ataxia, but I agree it probably was a little much.  Look, you only have one life to live here so live it up!

The Hottest Coolest Time in Texas!

Schlitterbahn was awesome!  It's the #1 water park in the country according to Travel Channel.  I got the VIP treatment all day long.  Yes, that's what I call special treatment due to my ataxia.  Me and my friends got to go to the front of the line on any rides we wanted because I am unable to stand in lines that are a mile long.  Just the waiting takes a toll on my body.  My friends and I pretty much rode every ride.  We rode the Master Blaster 2x.  Its sorta like a water roller coaster in a tube for two people.  Best ride ever!  I even got wheeled around in a wheelchair for a bit, eventhough I insisted I didn't need it.  But boy, it sure made us go a lot faster.  I really commend the supervisors at Schlitterbahn for such a great system in dealing with disabled individuals.  They were all super nice and very helpful too.  I even had a code name for their radios.  Whenever I heard '1078' over the radio, it meant me.  All was good till the end of the day when we were walking back to our locker and I fell in the bushes.  Only fall of the day, and it wasn't a bad fall at that.  No scrapes or bruises from it.  The only bruises I do have are from the tube rides (which was basically all the rides).  I had so much fun, and I'm so grateful to have the friends that I do!

The Facts

I know that Ataxia is a progressive condition.  I am not gonna sit here and pretend that my ataxic symptoms are not going to get worse with time.  But do I think about it?  Never.  Just because I know generally what the future holds for me does not mean I know any specifics.  No one with ataxia does.  The answer is beyond human comprehension.  And if you research the condition, not much is known about it anyway.  I mean, I could end up in a wheelchair or I could just end up having to use a walker; I may have speech problems in the future or I may not.  And at what age all this could or could not happen is questionable.  I may be 40, I may be 70.  How my symptoms progress is not definable either.  What I do know for certain is that I will not live the rest of my life without having to use any kinds of aides.  I could probably benefit from using aides now, but it is not a necessary action for me at this time.  The point is, myself or anyone with ataxia cannot sit here today and say 'I know exactly what is going to happen to me.'  No human can set my future in stone.  Only God knows what's in store for me.

The Weekend

I had a fantastic weekend, and my ataxia didn't affect me all that much.  I didn't fall, not once!  My weekend was pretty busy and my body didn't really get all that tired.  Of course, I took it easy this time as often as I could.  And drank lots of fluids.  I usually take a cat nap during the day, and this past weekend I didn't take even one.  I'm not gonna lie, my body still got tired, but I felt better than previous weekends of being super busy.


My friend came over Friday after I got home from work and we went to Subway for lunch.  Yum!  Then we hungout poolside until dinnertime.  I made sure to take a drink and a snack so the heat wouldn't get the best of me.  We went to the supermarket to buy something to eat for dinner and also rented a movie.  Waiting for Forever.  It was kinda a depressing movie.  Not any action and the storyline just moved really slow, and the ending sucked.  I was like, 'really?  This is it?'


After lunch on Saturday, we got ready and drove to my other friend's house.  I curled my hair, which took about 45 minutes!  All three of us just hungout at her house till dinner.  Then we met another girl for dinner at Cracker Barrel.  It's a southern cooking restaurant.  Like chicken fried steak and meatloaf and stuff.  So for all you northerners, you're missing out on excellent food...lol.  We all went to the discount movies after that to see Something Borrowed.  It was ok, but the storyline could've been better.  Grahams was our last stop for the night.  It's a dance club with 5 rooms: country, hip hop, karaoke, coyote ugly (girls dancing on bar), 80's music.  My friends and I did karaoke to some Spice Girls song.  A song that I really don't know.  The one that goes, 'if you wanna be my lover, you gotta get with my friends....'  It was fun but also embarrassing having all those strangers look at you.  I'd do it again, but definitely not by myself...lol.  Since Grahams serves alcohol, I got the "are you alright?" question pretty often.  I'm used to it so it's all good.  I just smile and say yes.  We danced on stage in the hip/hop room.  It was so much fun but my legs got sooooo tired.  Luckily all that dancing was not long before we left. 


Sunday was 'Sunday Funday"!  Two of my friends and their 5 kids and I went to the swimming pool all day long.  There are grills out by the pool so my friend bbq-ed us up some fajitas and hotdogs.  I had a blast, but can you imagine having ataxia and dealing with 5 crazy kids?  Talk about insane.  Chasing after them and whatnot.  Carrying them bc they can't really swim.  I do it all bc I want to, but it gets tiring, and I get tired a lot faster than most people bc of my ataxia I think.  The tiredness starts in my legs and works its way up.  Sometimes it's like my legs have a mind of their own...lmao

Warning!

Read this blog with caution!  I do not sugar-coat my ataxia stories.  You will hear the good, the bad, and the ugly....literally.  If you are not strong enough to hear about the hardships of living with ataxia, then DO NOT CONTINUE.

Say What?

Falling is a part of life for ataxians, including myself.  We can minimize how often we fall by slowing down and such, but it is bound to happen once in a while.  So the point is, there's no need to get mad or upset when it does happen.

I do know how hard it is to take this advice because I can obviously relate to it and how difficult it is to just 'move on'.  The other day when I was putting together my internet, I fell and busted my lip on the edge of my desk.  It hurt so much, that I just sat there whimpering and feeling sorry for myself.  I kept saying "why did this have to happen to me?"  First of all, there's no one to blame.  It was just a natural reaction.  I was mad and upset; all kinds of cuss words flew out of my mouth.  The crying was ok because my lip really did hurt, but everything else was inappropriate because occasionally falling is just what I do best.  Anyway, I got over it about 20 minutes later and continued on with my life.  My lip is fine by the way =)

Revelation?

I keep trying to act like I'm the average person and I can do normal stuff, and it really takes a toll on my body.  For example, I do activities at speeds the average person would do, when in reality I need to SLOW DOWN and take my time.  My symptoms didn't start until I was 17 so I know what it was like to live symptom-free.  In my day-to-day life, I act like ataxia doesn't affect me that much, when it does affect me more than I want to allow myself to think.  I am not denying anything about my condition, I just need to take things more easy.  I have a specific example to share.  When I was getting out of the pool last weekend, I kept telling myself I can get out without holding onto the rail (there were 2 steps).  I told myself 'I can do this.'  Yeah, I ended up falling, luckily back into the pool....lol.  So not a good idea to pretend I can do the "normal" things all the time.  Don't know why I think this way, but hopefully writing this blog will be a wake-up call to me that I need to do things that I know are safe for me (and not just telling myself I can do it) and at a different pace than most persons.  Because of thinking and acting this way, I really tire-out my body.  This makes me sick and drained of energy frequently.  I think it's time for a change.

Workout!

I got a huge workout yesterday, handling 5 kids jumping to me in the pool.  They kept wanting to do it over and over and over and over.  They jumped to me one at a time (well sometimes 2 at a time), and I would catch em.  All the kids are five and under in age by the way.  The youngest is two.  He was the crazy one that would jump when it wasn't his turn.  Cuz I told em to form a line, but he was so excited, he just didn't care....lol!  But I feel like I got a good workout in my arms; they are sore today.  By the way, I got a bunch of little bruises all over my arms too...lol.  I bruise too easily.  Just by poking my arm or leg, I'll have a bruise there the next day...haha.  My legs are sore today too.  I did alot of walking at the pool yesterday, plus the weight of the kids = tired legs.  I actually lost my balance and fell on my knee at the end of the day.  I'm ok and everything is just peachy :)

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.