types and signs of ataxia

This week I'm going to talk about something that I've already talked about a few months ago.Except this time I want to talk more about the different types about and less about my personal experience.The topic is ataxia,which is a neurological side effect and Greek for "lack of order".It causes lack of muscle control,most seen in walking.It's a dysfunction of the parts of the nervous system that control movement,a example of that is the cerebellum.

There are three major types,cerebellar,sensory and vestibular.I'm going to focus more on the first of these because that's the one most common with people with neurological disorders.People with cerebellar ataxia tend to have problems with muscle contractions,and problems with gait and eye movements.People with it may also have balance problems,which may be hard to figure out if it's ataxia or not because it's also common with brain trauma and brain surgery survivors in general.The common way that it can be determined by how someone walks is either by widened base and high stepping,or by staggering and lurching from side to side.Another common sign is speech impediments.some of the most common of these are slowed speech,stuttering, irregular rhythm and  of the voice.Another common sign is tremors which may include the head,torso and limbs.One of the more interesting ones is abnormal writing,which often include large uneven letters.

Sensory ataxia is usually caused by the spinal cord and signs include stomping gait and postural instability.Vestibular ataxia is caused by caused by the dysfunction of the vestibular system.Common signs include eye movements,problems with walking,,vertigo, nausea and vomiting.

The most common medical conditions that causes ataxia are stroke,brain tumors, multiple sclerosis, spinal cord disorders,niemann pick disease,chiari malformation,and wilson's disease.Other causes include exogenous substances,radiation poisoning.,and vitamin b12 definceny.Treatment includes both Physical therapy and ,occupational therapy and meds.

 Below are links to where I got my info and my own personal experience with ataxia.Next week I will have a guest blogger because I'll be busy at work  with the summer holiday.Thanks for reading :)


http://en.wikipedia.org/wiki/Ataxia

http://timothy-landry.blogspot.com/2012/01/ataxia.html

importance of brain trauma awareness/research

One of the main reasons I started my blog in the first place is to write about my experiences on how hydrocephalus has effected me,more than in childhood than recently.Unlike many others I've had the same shunt since I was first diagnosed as a toddler,so most of what I write about is about dealing my with brain injury and everything that came along with it.When I say that I have a brain injury you may think that it means I was in some kind of accident.For me and many others,it's actually something I was born with or acquired soon after.I have mine because of hydrocephalus,which is a build up of spinal fluid in the skull and brain.I have a shunt,which is a tube and valve that  drains the fluid.The shunt causes some problems as well,but the neuro disorder and the brain surgery that was done to help control it has effected me too.You can't poke at someone's brain and not have long term side effects,no matter the age.Even if the person hasn't developed skills yet doesn't mean they won't have problems with them when the time comes.It also effects each person in different ways,so not every case in the same.Below  is a few links,and thanks for reading :)

This is a link to a earlier post of mine that describes some of my personal experiences

  http://timothy-landry.blogspot.com/2012/01/neurological-side-effects-of-brain.html

the  next link is for a great source to anyone living  with a brain injury

 http://www.braininjuryforum.com/

the last is one of many hydrocephalus sources,but this one gives you the option of finding people in your area.

http://gabrielslife.org/

Self-Image/Self-Esteem

My hardest time dealing with my self-image was in high school,when I really started to realise what people think of me.Even though it's something I'm dealing with again lately it's easier because I actually understand what's going on now,and it helps that I don't have to deal with puberty at the same time now.I know other people who have to deal with the same things,and I've learned a lot from them during the last couple years.Getting to know people and going to the hydrocephalus walk last November that it effects who we are,but in different ways and different levels.Rather it's how our brains end up working,or with how well in learn in general.

Since at least when I started school I knew I was different then everyone else,at least when it came to being behind when it came to motor skills and stages.Also I knew that not everyone had a shunt like me,and that's why they could play contact sports and I couldn't and for years that's all it meant to me.I knew it would malfunction at some point but that's not something that I thought about at all.What I did know is that I wasn't potty trained yet and wouldn't be for the rest of the school year,no matter how hard I tried.I knew that I had a speech impediment and unlike everyone else,it was something that I had started a year ago.It was just something that I had to work at though,and that didn't really matter to me.There's other things that I was years behind than everyone else and other than the lack of depth perception and running like a duck I couldn't tie my shoes.Unlike with other things that was something I could hide,and I did my best to do so.I remember the thought of doing some activity at school where I had to take off my shoes would terrify me,because it's not something I wanted to admit.Instead of asking for help,I would just try to hide my shoe laces inside my shoes.

Because I was different in this way,I ended up getting picked on a lot more than I was able to make friends.I had little friends and it was a while before I was able to make new friends,but I managed to keep the same bullies until they finally got caught by someone who was willing to actually do something about it.Even if I knew how different I was,it was all normal to me so I would deal with it without letting it effect me much.By the end of elementry school I was sick of being different and being lonely.I was willing to do anything to just make friends,and I knew that "living the right way" wasn't getting me there.So I changed my behavior to get make people to like me,and I thought it worked.It was when I realised that all I was doing was making a fool of myself,and that a lot of those friends weren't even close to being my friends is when I really started to have problems.

I really began to hate the world,and I didn't understand why I was who I was.I didn't know anyone else with hydrocephalus,and I hadn't had any contact with my neurosurgeon since before I started school,so I didn't know how many ways it could effect me.So I thought for a while that there had to be something wrong with me.My bitterness against the doctors that had told my parents that I didn't have hydrocephalus didn't help either.The reason I could think of that I had a speech impediment and struggled with others,was that I was diagnosed late.

I'm realizing all over again now what people think of me,rather it's with how "worse off" people I think I am or who I actually am.Except this time I know how hydro effects me,and I have others to talk to people about it.I know what I could put my anger into.For example writing is something I used to deal with my anger,and it ended up working better than anything else.It also ended up getting me the help I really needed at the time,because of a couple teachers who realized that I really had a problem.

I'm going to try to work on my blog whenever I had a day off,but for now that's usually going to be different days,because my days off are when my back up person at work can cover shifts.Thanks for reading :)


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Memory

I haven't been writing much because of all the stress at work,so I've been forgetting to do a lot of things that I've struggled to do on a regular basis before.I'm going to talk about memory this week,because I know it's something that's hard to understand and more complicated than people may think.It's a common belief that it only happens with old age,and it doesn't help when it's something that's associated with a "invisible disease or condition".It's one of those things that don't always have to do with medical conditions and brain surgery either.For example one of my managers has similar memory as me,when it comes to excellent long term memory too but he has no medical history.
My memory is one of those things that I've always known was a problem,but I never associated it with having a neurological disorder because I don't remember having brain surgery and it was always just normal for me.I first realized that I have memory problems when I started going to a brigade type program when I was six.We each had to memorize a bible verse that was written on the white board,and they would erase one word at a time and we had to read it including the erased word.It wasn't a problem at first until more and more words were erased.By the end I couldn't remember what it said,and it would take me more help and at least a few more tries before I could remember it like everyone else.At the time I didn't think of it as having memory problems,because I wouldn't even have been able understand that.It was just something that made me different and made me struggle more,and I hated that.The second time  that my memory problems became more apparent to me was when I started junior high,at the same time that a lot of my other problems because more obvious.I had a hard time remembering what I had studied the night when I was taking the test,and if I managed to remember I couldn't remember it for much longer than that.After that the only major time that it has become real obvious is when I started working in Produce a little over a year ago,because of how much there is to remember.
When I say memory problems or short term memory loss a lot of people think of what I've already talked about or something similar.What people tend to not understand is that it can effect someone in a lot more of a major way,for me this includes constantly forgetting stuff,and having a very hard time trying to make and keep a routine.I've lost school supplies,a backpack,personal items and many many jackets because I tend to put something down,and then when I leave I forget I had it usually until it's to late,usually I don't remember until the next day.Up until a few years ago I only outgrew two sweaters,other than those I couldn't even making it one winter without losing a jacket.Some years I would lose two or three in one year.This included homework too,I would go home and I would just constantly forget to do it.Some habits that I couldn't keep sounds like it should have been really easy to remember to,like I would constantly forget to use my folders in school.I would just put it in my backpack and by the time I would remember about it,it would just be a crumpled up piece of trash in the bottom of my backpack.so I assume that's where my lack of organization skills came from too.
I assume that my memory has to do with my problems with learning new things too.when learning something new I usually can't do it at all until someone shows me one on one.
The good thing is that along with bad short term memory,I have a real good long term.there's things I remember from when I was a little kid,or even a toddler.I'm good at remembering info about people,and if given the time I can remember large amounts of info,at one point as a kid I would memorize tv schedules.it got to the point where my family started calling me the "human tv guide".thanks for reading,and hopefully I can write more sooner next time :)
 

working while living with a chronic medical condtion

Work has been keeping busy the last couple weeks and had a couple evening and graveyard shifts along with the normal morning shifts.I'm excited about getting more experience in Produce instead of just cut fruit and having little or no experience in everything else.But when I just do cut fruit then I usually always know what day of the week or at least the date because I pull everything in my case that's out of date when I first come in.It's not a big deal but it caused me to forget to start thinking of what to write about until just a couple days,so that's why I'm posting later in the week this week.I was having a hard time thinking of a topic so I didn't think I was going to post at all.This post is going to be more selfish than others,but I wouldn't be posting it if I didn't think it would help at least someone.I'll try to at least make it into something with more information than what I have already planned as well.

I've been thinking some today about how my job history would have been different if I would have decided to mention my hydrocephalus and my shunt in any of my job applications.It's not that I was afraid that I wouldn't get the job,but it I didn't see it as a issue.Up until a few years ago any problems I had with my shunt was few and far between,and not really something to be concerned about.By the time it did become a problem and when I started to think about it more I had been with my current job for a couple years,and I was working a second job.So I had already filled out all the job applications and at least started with all the jobs I've had.The company I work for is one that I know won't get rid of me no matter how many surgeries and recovery time I'll need in the future.I'm not saying that it's how my life will be,but hydrocephalus is very unpredictable and there's always a chance.I didn't realize the reasons why I should have put it on applications and there are several,but one is that it's usually more important to have a job where you won't risk getting fired or have the employer have no idea what's going on than to just get the first job that comes around.

Another thing that's important about working while living with hydrocephalus or any pre-existing condition that requires any kind of surgery is the work that you do.Although it's rare to get a job where you'll be in a good position during surgeries and then the recovery process it helps.The first couple of my jobs were fast food,and other than the risk of losing those jobs I can't really think of any other problems I would have had with them.But if I would have need surgery when I was working in a sit down restaurant that's where there would have been problems.The main one would have been trying to stay there without heavy lifting during recovery,because all restaurants jobs except for one include heavy lifting on a regular and then being a cashier/host can't always be a option.

I currently work a division of Kroger,and in August it will be 5 years.I've been in produce for a little over a year now and before then I was a courtesy clerk.I was stuck in that position for longer than normal because I had problems I had to overcome,because I don't always learn things as fast as everyone else,and because of people trying to keep me down because of disability in general.Produce is probably not the best department to be in with the risk of future surgeries or having a shunt in general but if I need to then I can switch departments.Then I can switch back to Produce when I can because that's where I really want to be and succeed in.But if that doesn't happen then there's several other departments that I can end up in and learn to love,that I can still work in even if I have a speech impediment.I know it might not what comes to mind when you think of produce but the reason why I may not always be able to work in produce is because of all the heavy lifting.The boxes and bags that produce is kept in can get pretty heavy,for example apple boxes and melon boxes are usually 50 pounds or more.I've always felt that health insurance has been good to have in a job,in general but when having a medical condition to be more specific.I don't know how much it will help exactly and I do need to work at least 80 hours a month to have it so when I need to go on leave that means that I will lose it before I'm able to work that many hours a month again,and it won't cover what happens when I don't have it.The other part of my job that I feel is important is the option of leave of absence,and it's not something where you risk losing your job after only a short period of time.There's sick leave,vacation and personal days too but it will only cover so much time and I'll only be able to have income still for about a month after surgery,and that won't save my health insurance.Also I'm a union employee,and I understand that people have mixed opinions about it but most people who don't think I should be involved don't understand the risks without them.Not only does it make it harder for people to mess with my job or even cause me to lose it just because of my disability it will help me when/if I need surgery.Because I'll be able to stress out less about medical bills,rather it means helping getting paid off or just stopping the harassment from bill collectors.Also if my health goes downhill,then they will be able to help me get on disability and have help with the transition.

I hope this helps more than I think,and thanks for reading :)

The future of Hydrocephalus treatment (video)

This would have fit in with last week's post but I didn't see it until right after I posted my last blog post..The video talks about new shunt technology.

Current studies on hydrocephalus

Instead of writing a longer post,I'm going to keep it short and provide some links.Before we can find a cure for hydrocephalus,we need to learn more about.Because in order to find a cure,we need to know what causes it.There's many people with the condition that knows why they have it,but a lot including me do not.Also it's important to find out how it effects our daily proof,and to find better treatment even if that means just improving shunts.

The first three links provide info on studies being done on three subjects,causes,how it effects children at school and a new shunt design.The last link provides less info but it's a overview of studies that HCRN (Hydrocephalus Clinical Research Network) is currently working on.Thanks for reading.





http://www.childrenshospital.org/chnews/05-01-07/latest_research.html#head

http://www.hydroassoc.org/ha-updates/new-hcrn-study-up-and-running/#more-6565

http://www.hydroassoc.org/hydro-in-the-news/in-the-news-njit-patents-new-shunt-design/

http://www.hcrn.org/research/