Friday, December 28, 2012

getting back into writing my blog..

This is the first blog post I've posted in two months.Unlike last year after melon season I continued to work a lot still and I was really getting burned out.On top of that I was in a stressful situation that at work that I won't go into detail about for respect for the company that I work at.I was having a hard time coming up with subjects,along with everything else that was going on I was having trouble coming up with new topics.I wasn't able to post on a regular basis so I decided to take a break until things got back to normal and so I could think of some subjects.

This week I'm changing positions but staying the same department,store and company.Instead of being the main person doing cut fruit at the store (parfaits,fruit trays,slices,cored pineapples etc etc) I'm going to be closing most of the week in the Produce department and doing back up for the person whose taking my place.It's not guaranteed it will be permanent yet,but I have faith in my co worker and high hopes.Along with the change of position,comes a lot of pressure off my back so I can focus on other things.It's less hours too but it would be good to have a break so I can focus on my health so I can feel better soon.

For the time being I plan to talk about the same subjects I have in the past,but any suggestions would be great.I'm going to post every other week and hopefully on the same days or before then.I'm gonna have to build up a following,and I feel bad for losing anyone who read this blog with the help of social media.

My purpose of writing is the same,and from talking to people I know I have been successful.If you haven't seen my first couple posts and started reading I was diagnosed with Hydrocephalus at 17 months,but have gone 25 years with no revisions.I wen't 22 years with barely any problems,and 18 years without having to have a CT scan. I've had to struggle with some things that's not exactly common with people with the condition,but also things that are that isn't really well known.My blog is to help get the word out about these things and other topics that have to do with Hydrocephalus that hasn't been put online as much as it should be.Also so I can do my part in raising awareness for Hydrocephalus. I've succeeded in doing this,and hope to make a even bigger impact this year and the years to come.

In the next couple months I'll be talking about Hydrocephalus related events I've participated in during the last couple of months and others and foundations planned for the future.Also guest posts and more about subjects I've posted about before,thanks for reading.

Thursday, October 25, 2012

this week..

This week 25 years ago,I was recently diagnosed with hydrocephalus and was having my shunt placed.I was diagnosed at 17 months and my parents were told multiple times that I didn't have it because of my lack of symptoms.A volunteer nurse ended up diagnosing me,and refereed us to a neurosurgeon.At the time my parents were told that I would probably need a revision every 2 or 3 years,and that it that my shunt *will* malfunction within about a 10 year period of time.He said if it didn't happen that it would mean that my hydrocephalus would have fixed itself and my shunt would have malfunctioned but I wouldn't have needed it anyway at that point.I made it past the 10 year point and this week I've had the same shunt for a quarter century.

I've found out since that both of those statements were wrong.50% of shunts malfunction or become infected within the first two years,so I had about twice the chance of my shunt malfunctioning as what they told us.70% of shunts malfunction within the first 10 years so although the risk is higher it's not impossible for it to keep on working.Also I know for a fact that my shunt still works because of a couple CT scans from a few years ago.At the point my shunt was working the same way it was 14 years earlier when I had my last CT scan done. I've had few problems with it until a few years ago,and the only time I really remembered thought of it was when I had to turn down playing contact sports as a kid.

I understand how blessed I am,and I doubt that it will be many more years before I need to finally get it replaced.No matter what happens in the future,I'll always be thankful for a "pain free" childhood and a normal life for several years out of high school.Thanks for reading..

Tuesday, October 9, 2012

not every case of hydrocephalus in the same

It's been a couple weeks again,and I've been busy or sick.During that time I've been having problems coming up with with topics as well.Something came to me as I was trying to fall asleep tonight.It's something I didn't grow up knowing,because I didn't grow up with other kids with and had little contact with anyone else with it around the time I was diagnosed and treated.It's something I didn't know when I was struggling with being "different" as a teenager.So I want to make sure that I can be a part of making sure this might not continue to happen.

Each case of hydrocephalus is different and many are not the "textbook case".For example unlike most babies born with hydrocephalus or diagnosed as a infant,my head didn't grow really any larger than normal.Then the average person with hydrocephalus end up having half their shunts last then two years.But since that's the average there's many who have shunts for decades,or need constant revisions there whole lives.Then there's the people who end up switching from one extreme to the other.

This is the same with many things to do with hydrocephalus.Many struggle to keep up with other kids when it comes to motor skills and some take years to keep up.Then there's kids who meet all their milestones without problems.

It also has to do with mental function,and not just with how well someone can learn.It also has to do with how much someone can understand things overall.If you get to know me you'll see where my problems are and how severe they are at times.But also if you ask to a lot of others with the same you'll learn how they can function etc etc and then compare them to me.

It seems like there's always a lot of people who are a lot better off or a lot worse with my medical condition in many ways.Knowing this it's helped me to understand myself a little more,not feel like such a poser,not feel so bad about myself and feel lucky to be where I'm at in life.Even though I still feel awkward and nervous that people won't see me,just the "disability".Sorry for the wait,and thanks for reading:)

Sunday, September 23, 2012

Brain fatigue and neurological disorders

Brain fatigue in a healthy person is when your brain has been over-worked for a extended period of time.Either that or by a decrease in oxygen,dehydration,or poor nutrition.The main symptoms are difficulty understanding new conceptions,impaired memory and slowed reasoning.

However with people with neurological disorders or brain injury survivors in general it's something that happens more on a regular basis without much reason behind it.There are common reasons like weather and allergies but many are not known.It doesn't always have the same signs as brain fatigue with healthy people either.

I can't speak for the person experiences of others,so this is based on personal experience.For me,it's something that I know I've always had because I remember experiences I had as a kid mainly without losing stuff or getting lost that wouldn't happen all the time.I've slowly become more aware of it among other side effects of brain injury/surgery overtime.It's basically whenever something changes where I end up needing to use my brain more.For example when I started elementary school and then again when I started middle school because how different it was.Then again when I got promoted at work from being a carry out for three and a half years to a job where I have to remember a lot.

Like with anything to do with a brain injuries everyone's experiences are different.But for me I know I have brain fatigue when everything that's connected with hydrocephalus for me just get's worse.Examples are memory,the ability to focus and organize,and knowing which direction I'm going when I'm walking down the street even if I've gone the same route many times.It's when I lose stuff the most or I manage to get lost.It's also when at work when I forgot routines that I've been doing on a daily or weekly basis for the last year and a half.

Thanks for reading,and sorry about not writing on the same day each week,with my schedule at work changing I'll try to pick a specific day to write.I might have a guest blog next week but I'm not sure yet,thanks for reading.

Saturday, September 15, 2012

Media views on hydrocephalus:Billy Graham

I'm posting about famous people with hydrocephalus or characters with it whenever I don't have anything else to write about,or when I don't have a guest blog lined up for the week.This is my second time writing on this subject,and my first talking about a actual person.By posting about this person I don't mean to try to push my religion on people.He's just one of the first people I thought of when it comes to people with the public eye who has hydrocephalus.

Billy Graham is a well known Christian Evangelist,and one of the first to be well known with the general public.He started holding crusades and revivals in 1947 when he was 28 and continued doing them until he retired 6 decades later.His crusades are still held annually but now by his children and the Billy Graham Evangelistic Association.He is also known as a spiritual adviser for several presidents.When he wasn't a spiritual adviser he still had some kind of personal relationship with many others from Harry Truman to Barack Obama.

he also had a friendship with Rev.Martin Luther King and supported the civil rights movement when many Christians didn't.He did a crusade with him in New York City with him in 1957,and bailed him out of jail after demonstrations in 1963.

Billy Graham was diagnosed with normal pressure hydrocephalus in 1992,but it still hasn't been well known in the  2 decades since.His shunt wasn't placed for several years,but when it was it helped with the symptoms of his Parkinson's.It was another several years before he had to have a revision in 2008.Since then he's continued to have health problems,but that's normal for someone his age.Unless it hasn't been in the news he hasn't had to have another revision in 4 years though.

I'm not sure what any future topics are going to be yet,so I may write more on this subject more during the several weeks,and I'm hoping to have others do guest blogs.Thanks for reading.

Friday, September 7, 2012

September is hydrocephalus awareness month :)

September is national hydrocephalus awareness month,which was helped passed in 2009 by the pediatric hydrocephalus foundation.Although I'm not doing as much as I want to or even as much as I did last year,I'm still taking some part in it.I changed my facebook cover photo and profile picture to hydrocephalus related pictures.Also I've been writing status updates and posting pictures.I'm also trying to use this month to start talking about my condition more publicly,instead of just online.The reason for that is to let people know why I act differently,what I really deal with,and that there might be a point where I'll need brain surgery again,and it might be very sudden.

Awareness is important for any medical conditions,and even more for conditions that are invisible.A "invisible" condition is one where you can't tell someone has it by looking at them.You can't see my scars and the only time someone could notice that I've had brain surgery was right after I had it as a toddler.You can see my shunt on my neck and collar bone,but it could be missed or mistaken for something else like a vein.The ways that it effects me are usually mistaken for normal problems,or even just not caring.

Another important reason for awareness is for people who are uneducated or just ignorant about medical conditions.Other than hydrocephalus some of these include down syndrome,and lupus.A common misconception about hydrocephalus that's it's been cured because of how well the treatment can work when it comes to being mentally function able.Also because the treatment usually shrinks the skull back to the normal size or close to it.It's something that's usually seen and made fun of because people think of hydrocephalus the way you would see it on google images.The majority of pictures on google that is tagged with hydrocephalus are other children and some adults with extreme hydrocephalus.Then most of them were from before sixty years ago when the first effective shunt was first invented,and in third world countries.That's what causes people to believe it's cured,and they wouldn't be able to spot someone with hydrocephalus because that's the only thing that comes to mind.Extreme hydrocephalus is also commonly joked about as "waterheads" or involved in urban legends.A well known comedian who has made a joke about "waterheads" is Larry the cable guy,who also helped give a lot of the impression that people with hydrocephalus are mentally retarded.

A personal and important reason for awareness for me is to make people connect my name with hydrocephalus,and I don't mean only think of me for that.So that when they meet someone else with it,or may have it,or if someone else that they known is dx'd with it they will know who will come to for questions and support.I don't mean coming to me and asking questions that they should ask a nsg.Instead having someone to talk to that knows what it's like to have the condition,on top of asking the doctor questions as well.

Thanks for reading,and I'm hoping to post more on a regular basis instead of skipping weeks because the melon season should be coming to a close in about a month.

Thursday, August 23, 2012

Merry Melodies/Looney Tunes and speech impediments

This week I'm writing about looney tunes and the speech impediments of some of the characters.This is a topic that I've seen on many blogs and other websites,and usually the same info with the person's opinion on it.I've noticed that most if not all of the opinions are negative.Some talk about how it encourages young children so pronounce words wrong on purpose,or how it's "annoying".None of the opinions are from personal experience,and that's where mine is different.

I have a neurological disorder called hydrocephalus.Hydrocephalus is when spinal fluid collects in the skull instead of draining.Since I was 17 months old,I've had a shunt to drain the spinal fluid.Hydrocephalus can effect people in many ways,but not in the same way for everyone.One of the ways it's effected me that may not effect a lot of others is that I have a lack of muscle control.I don't know what exactly caused it,it could be by the condition itself or the brain surgery I had as a toddler to fix the problem.The lack of muscle control caused me to have to work harder to learn and improve tasks that are either easy to learn,or at least not something that takes years.One of them is something that I still struggle with and has gotten worse again lately.I have a speech impediment that could be described as a slur more than anything else.I couldn't speak at all until I started taking speech therapy in preschool,instead I communicated with my parents and my sister with a form of sign language that I taught myself that only we could understand.It took a couple more years before I could speak in full sentences and I couldn't speak well enough to be understood my most people until I was ten.Then a few years after that I got to the point where although I still had a slur,speech therapy wasn't necessary because it was more important at then to stay in my classes during that time instead.

I knew I was different in childhood,it just that I wasn't aware of what people really thought of me because of it.It's not something that basically anyone whose written about this subject can understand,but watching looney tunes as a kid made me feel a little more normal.Even if they were cartoon characters,it was something I could relate to.That doesn't mean that it made me think they were real,or that it meant I shouldn't try to not get better.

If you watched you may think that most of the characters have speech impediments but in reality only a handful of them really do.Some of the characters that are commonly thought to have one but really don't are Yosemite Sam and Foghorn Leghorn.These characters have accents (Texan and southern) and they are mistaken for a stutter.The characters who are at least meant to have a speech impediment are Daffy Duck,Tweety Bird,Porky Pig,Elmer Fudd,and Sylvester.Daffy,Tweety and Sylvester  have a lisp,Porky has a stutter,and Elmer has rhotacism.Other characters that are thought to have speech impediments but have a accent instead are Foghorn Leghorn,Yosemite Sam,and Pepe Le Pew.The Tasmanian Devil may also be thought to have one,but his character doesn't really speak English in the first place,instead it's mostly grunts,growls and rasps.

The reason behind at least one of the character's speech impediments is that the voice actor really did have one.Joe Dougherty,the original voice actor of Porky Pig really did have a stutter that he couldn't control.Although it caused him to be replaced early on,Porky still had a stutter although it wasn't as severe.His speech impediment because a unique part of Merry melodies (now looney tunes) and the result was creating other characters with speech impediments or accents.

The first link below is a list of television characters with speech impediments,and the last two is where I got some minor information.Wikipedia may not be the best source,but it works when it comes to what I needed to find out.Thanks for reading :)

Monday, August 13, 2012

personal experience with P.E and a disability

I've still been working a lot lately,and for the last several weeks I've been working six days a week.So I haven't had time to write as I would when it's not "melon season".This week I'm going to talk about my personal experiences when it comes to physical education in elementary school,and compared to other's experiences.When my shunt was placed,along with malfunction symptoms my neurosurgeon told my parents that I wasn't allowed to play contact sports.The reason behind this is that even with a helmet it may have caused damage to my shunt.I didn't feel left out because I had no interest in sports anyway,and my siblings never played sports either.The only time I really felt left out was when my friends were playing,and I had it sit out and just watch instead.

Until my "hydro peeps" started finding me on facebook I never put to really thought about how my physical education teachers treated me,more the teacher I had for 5 years in elementary school than anyone else.I learned quickly than others living with the same condition as kids either won't told to not play contact sports at all,or even were told to sit out everyday.However most of the people that have told me that they need to sit out all together grew up in the sixties and seventies,the first generation after they came out with effective treatment.So very little was known about the condition,so people were scared to let kids with the condition do as much as they can now.

My physical education teacher had strict rules about contact sports.I assume they were for the safety of all the kids,but they made me be able to play the sports with everyone else,instead of having to sit out.The few times there weren't "no contact" rules she made it a option for anyone who wanted to,to sit out.There were sports that I was really bad at because of my depth perception and my ankles but when she could she would put me in a position or have someone help me.

There's one thing that did happen however that I didn't really understand at the time,but I've had problems getting over it since I figured out what people really think of me.My ankles caused me to always be the slowest runner so I didn't expect to be included in the track and field program they had my last year of elementary school.So I was really surprised when they had me pick up my shirt and told me I was going.They never explained to me why I was going until I we were there,and didn't really explain it when we there either.They never told my parents why I was going either,because if they did I know they would have disapproved and stopped the school from taking me.They had me run in a race with other kids with physical and mental disabilities.It may not sound like a bad thing but most if not all the other kids were a lot "worse of" than I was and am.The people who had me go probably didn't think much of it,and if they just wanted me to included me in it than I'm glad they thought of me.but if it wasn't than it hurts that they thought of me that way,and that it may have made my classmates think of me that way if they hadn't already.

Thanks for reading,and I'm hoping to start writing more on a regular basis soon.

Thursday, August 2, 2012

Not all disabilities are visible,and not everyone with ones needs a wheelchair.

I've been told a couple times lately that I'm not disabled.When I've been told this they mean they don't see it in the work,not so much that I don't actually have one.This is coming from people who know I have hydrocephalus and someone who doesn't.The first time I was kind of offended because my first thought that my "disability" doesn't actually exist.Then later on he mentioned why he thinks that,and even if he still doesn't understand how it effects me I still respect him for it a lot more than people who think the opposite of me.My disability is invisible technically compared to others,meaning that it doesn't effect me physically as much as others.A example of this is that I'm not in a wheelchair and unless people don't know me or are to ignorant to get over stuff like my speech impediment than people know that I don't have a intellectual disability The reason I ended up staying in special ed classes wasn't because I wasn't smart enough to take certain classes with everyone else.It was because I couldn't keep organized at all and didn't know why,and my memory failed me when it came to remembering to do homework.When I did remembered I struggled to remember what I had studied the night before when taking the test.It wasn't limited to these problems but most of it I know now is directly related to having a brain injury.

My disability is hydrocephalus and it's considered that because of the brain injury and condition itself,and everything that may or may result of it.Rather it's actual learning disabilities or just the side effects of brain injury.It's also considered a disability because of the pain it causes,and even if you can't believe it surgery doesn't "fix" it every time or even a option.Everyone has experienced pain and most have had migraines or at least headaches.Think of how it effects you and imagine how it effects people who have to deal with it on a constant basis,not just with hydrocephalus or other neurological conditions but with anyone who has conditions that have to do with constant pain.It isn't always obvious and a lot of the time daily routines can still be done,but that doesn't mean that it's doesn't make things a lot harder.

I've been working hard to overcome all the side effects of my brain injury and anyone who has known me for a long time,knows how much I've struggled.Rather or not they know what causes it,it's always been a part of my life in every way.It's not something that's just not going to go away and I've had to deal with certain things like worse again like my speech impediment,and if/when I need surgeries again than it will mean I would have to re-learn things again each time.With a lot of the side effects like organization skills I've improved a lot and you don't always notice it as much if you look at my work area compared to what my backpack looked like in high school.With others like short term memory loss I've learned to hide more than I use to.If you look at the work of others and look at mine then you won't always be able to tell I'm the disabled one.But also a lot of people don't try when it comes to things like that because they don't think it really matters,but with people like me we've been working hard to be "normal" our whole lives or starting when we became disabled.So remember that not disabilities are visible,and not everyone with one needs a wheelchair,thanks for reading.

Monday, July 23, 2012

Get to them before they get to you! (Guest blog by Keyt Harrington)

In the past few years a lot of attention has been given to bullies, what they do, why they do it and how to "fix" them. Unfortunately, not much attention is given to those who are bullied at the time it's happening, only when time has passed and the victim has had to spend a big portion of their life in therapy.

I spent my teens and twenties in therapy, but for various reasons. The majority of my bullies were my own family members because I wasn't the perfect child they wanted. That or whenever I was sick they thought I was faking it or looking for attention. Sure, I'm going to go up to a neurosurgeon and say "Hey, would you shave off all my hair, cut open my head and put plastic parts in it just so I can get a little attention around here?". I don't think that would work.
One time while in family therapy the doctor asked my dad why he seemed so distant to me. I'll never forget his exact words: "Because I wanted a normal child, not one that would cost me thousands of dollars to keep alive. I have better things to do with my hard earned money than that!". Yup, that's what I lived with!

Don't get me wrong, I had my bullies in school too. Not many because there's one important lesson I learned early on by having a messed up family; act like they don't bother you. You hear it a lot in discussions about bullies but it really does work! I learned some tricks by watching comedians on tv (this was long before YouTube!) and practicing in the bathroom mirror.

Here are some real examples of things that have been said to me and what I said in return:

Bully: "You're stupid!"
Me:  "At least I know I have a brain, I have pictures of it. Do have any of yours?"

Bully: "Everyone is smarter than you!" (said to me by my 12th grade English teacher!)
Me: "Oh yeah? Not everyone has a pump in their brain making it bionic!"

Bully: "What happened to your hair, did it catch on fire like Michael Jackson's?"
Me: "What happened to your face (pointing to her zits) did you fall in a rose bush?

Dealing with bullies is all about taking them by surprise. Laughing at and teasing a bully in return isn't easy but in almost every case they stopped teasing me as much or quit altogether. Of course a shy person will have a difficult time standing up to a bully in this way so a little practice with someone they know might be in order.

Most bullies act the way they do for two reasons: one is lack of knowledge. They may not understand how much it hurts the person they are attacking or, if that person is disabled they may not know why. Like with me, I don't look sick except for the times I was missing hair or had seizures in class. The other reason is they may have been bullied themselves so they strike out.
In 5th grade my teacher set up an assembly where I got up in front of the whole school with my mom and my teacher. She asked me questions about my hydro and my shunt and I answered them while facing all of the students!! I even went there with an IV bag and an old shunt for props (most docs will give you your old one if you ask for it!). At recess that day my biggest bully, Greg came up to me crying and apologized for being mean to me!! In middle school I had a really great counselor who brought me and a bully into his office to have a chat. It gave me the opportunity to explain how much his words hurt and to tell him why I did the things I did.

Believe me, even at 43 years old words still hurt me. For example, even when I act silly on purpose and someone says "That's retarded!", I get the heebie jeebies! They may use it as a saying but that word shouldn't be used in any situation! Yes I'm slow, can't remember anything from one hour to the next and I stutter. However I am a functioning human being...with different than those with less physical or psychological abilities than me! I have learned that those who want to act like children and bash and belittle me are not worth my time and I completely remove them from my life if I can. If I can't then they get the tried and true silent treatment and they don't hear from me unless it's absolutely necessary.

I'm sorry but the walking away from a bully thing that my parents always told me to do doesn't always work. Using a little comedy or explaining your situation does. In today's world it's a little easier with social media because it's easier to hide behind a computer and say what's on your mind that you couldn't say in person. Granted, it may not work if you see your bully every day like if you were in school. A few times I have been known to send emails to the people that were hurting me (as an adult because emails pretty much weren't in use when I was in school lol) and it did work. It might take a little help but there's almost always someone around you who is willing to help. If you can't ask anyone for help, go to a search engine and type in something like 'letters to send to bullies' and you will find some examples!

Now, all of that was speaking to those being bullied. Before I end, I have a couple of things to say to those who bully. Some day you may grow up and find out that person you are picking on is seriously sick, dying or God forbid, dead. Do you want that on your conscience? Do you really think picking on someone makes you a bigger person? Well I have news for you. It's rare that a bully doesn't say the wrong thing to the wrong person and not get hurt at some point. Just like some people who are bullied commit suicide, well some bullies are killed because of what they say. This goes for kids AND for parents!! Think of school shootings. Almost all of the people who did the shooting were bullied at some point. So, which would you rather have, a little temporary fun picking on someone or a bullet to your head? Frankly, I prefer keeping my mouth shut so I can live!
Oh, and you may think everyone likes you because you have a ton of friends? No, they're friends with you because they're scared of you and they feel like they don't have a choice. That's not friendship, dude, that's survival!!

Thursday, July 19, 2012

side effects of injury to each lobe of the brain

The following is a list of common side effects to the brain and categorized by each lobe of the brain,and all my information is from the video at the bottom of the screen.No brain injury is the same,and what me seem like the same brain injury (like a neuro disorder) doesn't mean that the same two people are the same either.So some of these may effect some people but not others.Also just because the brain injury occurs at birth or soon after doesn't mean that the person will experience these same things,it just means that they won't able to experience what it considered to be "normal".I gave descriptions for some of the side effects that I felt didn't explain enough,but others I had a hard time finding info on it so I just left it blank.Thanks for reading..
Frontal Lobe

Sequencing-Not being to sequence activities or achieve a goal.
Decision making-
Attention-distractibility and poor attention
Personality-Problem solving-
Verbal expression-the communication (in speech or writing) of your beliefs or opinions; "expressions of good will"; "he helped me find verbal expression for my ideas"; "the idea was immediate but the verbalism took hours"
Spontaneity-Spontaneous behavior, impulse, or movement.In responce to others and enviroment.
Emotions-Control of them or how they function
Movement Initiation-The lack of control of them,seen a lot in Parkinson's.
Changes in social Behavior-
Impared working memory-

Temporal Lobe

Spoken Word-Understanding spoken word.
Selective attention-the process by which a person can selectively pick out one message from a mixture of messages occurring simultaneously
Inhibitions-A feeling that makes one self-conscious and unable to act in a relaxed and natural way.
Facial recognition-
Locating Objects-
Short Term Memory loss-
Persistent talking-

Parietal Lobe

Object Classification-
Tactile Processing-
Academic Skills-
Cognitive Ability-
Directional Understanding-Knowing the difference between left and right etc etc..
Hand-Eye coordination-
Spatial Orientation-

Occipital Lobe

Vision Field-
Locating objects-
Color identification-
Word Blindness-Not being able to recognize words
Movement Perception-
Visual Processing-
Visual Illusions-Inaccurately seeing objects

Cerebellum Lobe

Gross and Fine motor skills-
Voluntary Motor skills-
Equilibrium-State of balance. Condition in which contending forces are equal.
Postural Controls-
Eye Movement-
Scanning Speech-also known as explosive speech, is a type of ataxic dysarthria in which spoken words are broken up into separate syllables, often separated by a noticeable pause, and spoken with varying force.

Brain Stem

Body Temperature-The lack of a control and keeping a normal body temperature.
Heart Rate-
Swallowing-Not being to swallow foods and liquids as well.
Vertigo-True vertigo is the sensation of moving around in space or of having objects move about the person and is a result of a disturbance of equilibratory apparatus.
Sleeping Difficulties-

Friday, July 13, 2012

Media views on Hydrocephalus:Jason Voorhees

While coming up with new topics I've decided to while still post about Hydrocephalus and neurological disorders in general,I've decided to start having people do guest blogs and write more about media and social views on Hydrocephalus.

Considering it's Friday the 13th,I'm going to write some about Jason Voorhees.If you don't know already,he's the serial killer in the majority of the Friday the 13th movies,with the exception of the first.It's rather hard to say if it gives a negative or bad impression because the movie is set in the days before shunts.

In the movie his untreated Hydrocephalus has caused him to be mentally retarded and disfigured.This  caused him to be picked on by the other kids at camp,where his mom was a cook.The outcome ended up being Jason drowning while the camp counselors were having sex.The rest of the movies had to do with Jason and his mom getting revenge on future camp counselors.Sorry about the short post and the lack of details.I'm hoping to get a more detailed post up soon,and posts about other movie and TV characters that are at least believed to have Hydrocephalus.Thanks for reading :)

Thursday, July 5, 2012

Hydrocephalus and autoimmune diseases (Guest blog by Keyt Harrington)

Hello! My name is Keyt (Kate) Harrington and Tim has asked me to tell you a little about my story.

I am 43 years old and it is believed that I was born with hydro, but sadly it wasn't diagnosed until I was 5. I spent my early years with terrible seizures, jaw and mouth issues, medication allergies and countless emergency room visits and hospitalizations. It wasn't until I was 5 years old when I had my first bought with cerebral meningitis (I've had it 3 times!) that doctors finally discovered why I had been so sick.

Since then I have had 20 shunt replacements or revisions and had my gall bladder, appendix and right kidney removed plus a full hysterectomy. I have also had multiple surgeries on my feet, mouth and several other exploratory surgeries.

All of that, believe it or not is not the worst of my battles.

Approximately 7 years ago I began developing strange thickness and curving of my fingernails. They didn't hurt right away but as time went on it didn't matter what I bought over the counter, nothing worked. About a year after that started, my scalp began to itch, and as I scratched it I had flakes fall like it was dandruff. I tried dandruff shampoos but it made it worse. I couldn't wear dark clothing, wear hats of any kind or use most shampoos. That was it, I gave in and asked my doctor. She looked at my fingernails and my scalp and just said it was an allergy.

It has been said often by those of us who battle hydro or any long term illness that we know our bodies better than most doctors. I knew this wasn't an allergy but my doctor wouldn't look into it further. That was when I surprisingly gave up too. I let it go for another year, didn't talk to anymore doctors and fell into a depression as my fingernails kept swelling and my hair began to fall out.

Then one day I woke up after only a couple of hours sleep because I was itching so much and I decided I HAD to do something. I had spent a lot of time reading about skin conditions and remembered that sunlight could help. I was a guard at the pool at my apartment so I thought it would be perfect! I had nothing to compare myself to all those photos I saw online except for my nails because I had no idea what my scalp looked like! So I asked my neighbor's husband if he could shave all my hair off. He looked at me funny but I told him it wouldn't be a big deal because when I was little, neurosurgeons would shave off all of my hair instead of just the area they were operating on like they do now!

The day Mike shaved off all of my hair, his wife, Justine invited a bunch of our neighbors and we grilled some burgers, had a few beers and made a party of it!

But...once my hair was all gone, I saw Justine crying. When I asked her what was wrong, she handed me a hand mirror. Before I even looked, I took a deep breath. I knew I was going to see something bad, but little did I know what I'd see!

It's called plaque psoriasis. Those little white things raise and sometimes fall off on their own. I eventually developed a habit of picking them off because they would pull my hair and really hurt! Plus notice how it's very close to my shunt scar? Well, this was 3 years ago. Not long after this photo was taken it did creep onto my scar and down my neck. I just assumed I would have to live like this forever.

That was until I met my boyfriend, Aric 7 months later. When we met I barely had any hair. He said it didn't bother him, but what did was the fact that I was so miserable. He called around and found a different general doctor for me and insisted that I make an appointment. I had already spent 2 years not seeing any doctor so I didn't have any interest, but he told me I already had enough going on that I didn't need this too. So I made the appointment and joked that the poor doctor will kick me out because I had so many health problems!

Dr. Coombs was shocked that one person could have as many health problems as me and still be alive or not in some mental institution from major depression! She immediately sent me to a dermatologist but after a few months there and only receiving a few injections, I wasn't happy. By this time I could barely walk, lift, bend over or anything and she knew it had to be something more than just psoriasis. She decided to send me to a rheumatologist because they deal in both skin and bone conditions. After a couple of blood tests Dr. Dinning confirmed  psoriatic arthritis. I cried because finally someone believed me and confirmed what I had known for 7 years!

Basically, psoriatic arthritis is psoriasis and arthritis together. It's much like other forms of arthritis but it can often be worse because of the skin irritations. It's an autoimmune disease. That happens when the immune system mistakes some part of the body as an organism and attacks it's own cells. Anyone at any time and any age can get an autoimmune disease, but usually people who have had surgeries (even just one!) or some other disease (trauma) will develop an autoimmune disease. Psoriatic arthritis is just one, there are other more common ones such as celiac disease, eczema, lupus and multiple sclerosis. 

Unfortunately since my official diagnosis last year I've gotten worse. It's harder to walk, I can't stand for long periods and my sleeping patterns are worse. In March, my doctor decided it was best that I try infusions. As soon as he said that word I cringed. Not because the idea of infusions bothered me, but the needle did. I'm not scared of needles, but when you've had as many surgeries and hospitalizations as I (and many of us) have, your veins begin to fight back!

This tatt gets a lot of attention. When in an emergency room I've had people come from all over the hospital to see it or people take photos with their cell phones!

The first two times I did an infusion it took 6 tries each to get a needle in a vein. Since I had to have them regularly (and will have to for the rest of my life!), my doc sent me in for an infusaport. It's like a PICC line but it's under the skin and can stay forever.

Now all it takes is a poke into a small little port under my skin and I don't feel a thing!

The infusions don't completely take the disease away. In fact, after I began them, I developed raised spots on my legs.

These are just as itchy and uncomfortable as the ones on my head! I have about a dozen more since this picture was taken a month ago. Wouldn't you know they develop during summer too! But, here's how I look at this; I'm alive. I can't work anymore but I have a wonderful boyfriend whom I live with in a home that's paid off. We build things to sell and make money plus I get Social Security so it's not all that bad. We have a small farm with approximately 80 animals so they along with Aric all keep my spirits up. I try to look at what I do have instead of what I don't anymore.

Plus I have wonderful friends like Tim who allowed me to tell my story and spread the word that things could be so much worse!

Wednesday, June 27, 2012

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 :)

Wednesday, June 20, 2012

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

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

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

Tuesday, June 12, 2012


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 :)


Monday, June 4, 2012


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 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 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 :)

Thursday, May 17, 2012

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 :)

Monday, May 7, 2012

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.

Thursday, May 3, 2012

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.

Wednesday, April 25, 2012

limitations including career paths

Sorry I haven't been writing on a certain during lately,but I have been making it a point to write during the start of the week or at least before Thursday.Also I had a problem coming up for the my topic this week.Lately I've been thinking about career paths or other activities that I wouldn't be able to do simply because I have a neurological condition and more than I have a medical device in me.I don't know if this post will help others as much as like others posts during the last few months though.But it's been brought up on hydrocephalus groups on Facebook somewhat and it's something that I've personally thought about once in a while.

I don't know if I've mentioned it on here or not,but growing up I knew very little about hydrocephalus.Actually the only thing I knew about it except for my shunt and knowing that I'll probably need to have it replaced at some point was my limitations.I knew that I couldn't play contact sports,and I knew that I wouldn't be able to join the military.By knowing my limitations I'm talking about everything that I had to work harder on and fall behind me on when it seemed to be so easy for everyone else.The everyday limitations didn't always make me think of my condition though.But when I had to turn down every playground game that what a contact sport it did make me think of it,and it was lonely having to sit out on games.Thankfully my elementary school P.E teacher only planned things that I could be a part of,and the few times that I couldn't she made it a option for the whole class so I wouldn't feel left out.I didn't think about it much until I started to hear other people's experiences with P.E,but I'm grateful for what she did for me.

I knew that I couldn't join the military for as long as I can remember,and it didn't really bother me until high school.Either though I still think about not having career paths that I knew I'll never be able to do with physical contact,and one that I never thought about that I'll never be able to do which isn't usually something that's realistic anyway is being a astronaut.Not only would there would be a danger when it comes to the physical training,but being in space would most likely mess up my shunt.Not only would the pressure be a problem,but my shunt relies on gravity,and there's none in space.None of these options would really be realistic options except for the military,with or without my shunt so it doesn't bother me.

What does bother me is the career paths I can have now that I may not be able to do in the future.I'm not saying that it will happen,but with the condition I have there's always that chance that my condition will become more severe and there might be things I can do that I won't be able in the future.I'm not going to talk much about the career options that I won't be able to do because it's something I haven't put much thought into and most of it hopefully is things I won't need to consider doing for a living.However hopefully I do write about it can be used as a example or other career paths too.I currently work in the produce department for a division of Kroger.You might not think about it when you think about a produce department in a grocery store,but my job involves a lot of heavy lifting.Most of the boxes fruit come in tends to be heavy and it's not uncommon for apple boxes,melon boxes etc etc to be about 50 pounds.When/if I need a revision it's going to mean that I won't be able to work in Produce,or at least not the normal way because it would be months before I could do heavy lifting,if ever.So at some point Produce might be a option,and though I'll miss it there are other career paths in the grocery business.What would be a problem if there's ever a day where I lose my job in the grocery business and have to go back to working in restaurants like before.In that industry there is little that wouldn't have to do with heavy lifting,cashier/host only.

There are also jobs where we/I could do that wouldn't  be a rise choice because hospital stays and recovery wouldn't be a option.Personally that job for me is retail management.It wouldn't be a risk to my shunt,and if I tried hard enough I can do it.But it's a problem when someone in that position calls in sick at all,let alone suddenly be on leave.These our usually jobs that we can't do because of safety reasons,and these are jobs that we could be offered.But it wouldn't exactly be always wise to have them.This is just my opinion,and I know there may be people who don't agree with me.

I know at least some people see the limitations of career choices as discrimination to us,but it's really not.It's for our safety,and I'm neurosurgeons would agree with the military,professional sport leagues,and NASA to not hire us for these jobs.It's discrimination when it's a job that we could do physical that they would't hire us for just because we have a disability,and some of those jobs just aren't worth fighting for.Thanks for reading :)

Monday, April 16, 2012

my teenage years dealing with a neuro disorder

I'm working really early this week so I'm not going to be able to be online so I won't have time to blog this week,so I might as well get it over with now.This week I want to talk about my challenges with being a teenager with hydrocephalus,most or even all of what I'm going to talk about I had no idea at the time that it has anything to do with having a neurological disorder.Also if your pretty new to reading my blog I want to give a reminder that I've never had any revisions yet,and my shunt is "24+years and draining.." so this post has nothing to do with surgeries.

I tend to be a pack rat and I managed to never throw away a bunch of papers from my last semester of high school until just a couple months ago.While looking through them one last time before getting rid of them I was reminded about what I struggled the most with because of papers from counseling or in class.For example I've always struggled with being able to focus,and the result in class would be unfinished notes.I would start but by the end I would usually lose focus and never get them done.

When going through my counseling notes I noticed that everything that I wrote down that caused me the most stress had to do with hydrocephalus in one way or another.I always had a hard time opening up my locker,partially because of my hands and also I couldn't remember my combination.It wouldn't take long before I just gave up for the whole school and started to carry it all in my backpack.Either way of dealing it would have sucked,but trying to mess with my locker would have just made me late to my classes even more.Another thing that I wrote down that caused me the most stress,was dealing with my emotions.It's something else that I've always struggled with,and it was the first thing I learned about when I started to meet others with the same condition online.Apparently it's a direct effect of "brain problems" and it's something that is likely to only get worse when shunt failure happens.

High school was the biggest point of my life when I realized what people thought of me,but I didn't understand that that's what was causing me to be so angry at the time.Dealing with that,puberty and other problems and not knowing what was going on at all resulted with a lot of anger and I didn't know how to control it or where to put it,so I ended up letting me get really down and let it out on myself.I was also very bitter toward the doctors who had told my parents for a year and a half and that there was "nothing wrong with me".From what I knew I had just figured that my speech impediment and lack of muscle control had to do with the late diagnosis,and I figured that if they would have just diagnosed me on time that none of those problems would exist.I've found out sense that it has nothing to do with it directly,although it might have still something to do with it.I'll never know for sure what caused it,but I'll rather not know.Thanks for reading :)

Thursday, April 5, 2012

history of hydrocephalus treatment and a hope for the future

I've tried to make it a point to write at least once a week,so I apologize for not writing in during the last couple weeks.

Although there really hasn't been much improvement in treatment in the last sixty years for hydrocephalus there has been some.Other than in the eighties there has been some development in shunts since when they first came out with them.The main reason that it took until then is because they couldn't determine what was causing it exactly because they didn't have the technology  to find out.Then they didn't have the technology to find out someone has hydrocephalus before they were born until decades later.The first treatment they tried for hydrocephalus was ventricular punctures,and it didn't work because he thought that it had to do with the outside of the brain rather than inside it.In ancient greece they attempted to treat hydrocephalus by wrapping bark around the person's head and in trephined holes.Several other treatments were tried to during the last couple centuries before shunt technology.Many were not successful due to lack of knowledge on what hydrocephalus,but some were close to knowing what the cause and wasn't successful for other reasons.One interesting treatment had to do with leeches,because a 19th century doctor thought that hydrocephalus was a inflammatory disease/condition.

The main two people who invented the first and still current shunt valve were actually not doctors.One was a toolmaker and the other is a famous children's author.They both were fathers of a son who developed hydrocephalus in childhood,and they both had the determination and the knowledge to make something that would not only save their sons lives.The inventor of the shunt valve is John Holter.His son Charles was born with severe spina bifida and after meningitis he developed hydrocephalus.This was 1950 and at the time the hospital they went to had developed a shunt but they didn't have a valve for it.After a failed attempt which resulted in the death of a young boy,he made the first shunt.Although it didn't save his son the shunt is still in use today.His model is the "Spitz-Holter" shunt.

With the first development in shunt technology was partially made by a engineer and a neurosurgeon the person who decided to make it and also had a huge part in developing the shunt itself was Roald Dahl.If you don't know who he is,he's a children author who wrote books who would later be turned into popular movies like Charlie and the chocolate factory.Although shunt problems are common and the need for revisions is far more likely than they should be,it use to be alot worse.After Dahl's son's carriage was hit by a taxi he developed hydrocephalus.Back before he created his valve shunts would jam more often and be more likely to cause brain damage and blindness than it does now.He ended up inventing the valve system that's still in use and at least at the time metal discs were invloved.His valve is no longer in use and his son didn't need a shunt anymore by the time he finished it,but it did save or at least made life easier for several thousand children.Kind of off subject but Roal Dahl was one of my favorite authors as a kid,and still is.I think it's pretty cool that he has a part in why I was alive and well at that point in the first place.

There was developments for shunt technology in the decades to follow nothing really worth mentioning.In 1997/1998 the programmable shunt was developed and released.The purpose of it is so that not every problem doesn't have to involve surgery and a new shunt.Instead the person's neurosurgeon can change the setting.The prolem is that even though that it makes that part of a person's life the programmable is likely to cause other problems,and just isn't worth it.Personally because of not having any revisions yet and having a shunt about about a decade older than the first programmables I can't talk about it from personal experience.

The newest known developed is endoscopic third ventriculostomy.It involves making a small hole in the third ventricle of the brain so having a shunt isn't needed.Although it was used pre-shunt for several decades and it was successful and replaced by shunts.It's more effective now but it still fails,and only a small amount of people are able to have it done.I already know without needing to ask a neurosurgeon that I'm not one of them.

There has been small improvements in recent years but nothing that's really well known or at least known to be effective.There is hope though,before 30 years there was no foundations for hydrocephalus so other than what was funded by the government which has never been much.Now more than ever with foundations,and social media with have more of a chance to raise money or just awareness.There working on new developments rather or not we hear about it alot.The way we're going there's hope for a cure,thanks for reading :)

Friday, March 23, 2012

how growing up with a neuro disorder effected my faith

By writing this I'm not trying to blame anyone or the church.I'm also not to try the force my beliefs on everyone.I'm writing about it because I know I'm not the only one to feel this way,and I want to share my experience with others so maybe they can understand what's going on earlier.

There are two mean reasons that ended up effecting my faith in a negative way.One had more to do with how people see me.The other has more to do with the side effects of brain surgery and having a brain condition in general.I'm gonna talk more about the second reason than that the first,because the first reason was more because of anger.When it comes to how people see me it was more than I just wanted to fit in,and that wasn't happening when I was living the "right way" so I made a choice to rebel.I still struggle because of making that choice,even if it was only on purpose for a few years.Now that I'm slowly getting back into read my bible,I've been finding alot of verses or sections that would have helped me alot back then.I know that at least a couple times,someone showed me verses that they knew would help me.But then again I don't know how many people knew what I was going on in my life at the time.

The second reason has to do with what I've been talking about,a mixture of side effects.This includes more than anything having a bad memory,and not being able to focus.Another one that I haven't talked about much is not being able to understand things at least at first,that others at least seem to be able to understand right away.As a kid I was taught that I should memorize bible verses,but that was something that I've never able to do.I'm sure that I can do it,but not in the time that was giving to me.For example when everyone in the same age group was given to verse to remember during the period of time,I always the last to rememeber it long enough to say it.I could do it,but it was discouraging to always be the last.Something else that I couldn't focus long enough in sunday school to finish the assignment that we had in class,and like the rest of my homework school,whatever homework I had in sunday school would never get done.The whole time I've never been able to remember to when my bible etc etc on a regular basis.Then later on it I started going to bible studies,and when sunday school was more in a bible study format I struggled with being able to focus,understand,and remember all over again.This seems to be worse in small groups than anything else.

Even if I was not told that I was,what I was not able to do made me feel like a bad christian.I'm now understanding that this is not the case,and I'm working on getting back to where I used to be when it comes to my faith and relationship with God.This time I've decided to base it on what it should be,not comparing it to anyone else.It's not that I don't want it to be like others,but I need to know that I'm not a bad christian because of this,and I'm not claiming that I am,because I'm not living the way I should be right now.With me it's more I can't or it's harder than me,rather than just not choosing to do it.Thanks for reading :)

Thursday, March 15, 2012

Effects of damage to different lobes of the brain

I've been really busy with work this week and I don't have much time and sit down and write,so I'm going to post a video I saw this week.It's a more detailed description of the side effects of brain injury.It talks about how it effects each lobe of the brain.

Thursday, March 8, 2012

2012 Phoenix Hydrocephalus Walk

Last year was the first that I participated in anything that has to do with my condition,other than a couple one on one conversations with people who also have the condition.Everything else has always been online.Last year other than signing up,I ended up putting everything off because of how much I worked last spring and summer.The result was going up to Phoenix,and going to the walk alone.This year I'm planning ahead,I've already signed up 8 months ahead of time.In the next few weeks I'm gonna start working on getting a ride up there,and getting other people signed up.Also I'm gonna try to figure out new ways of raising money while still in Tucson,and also using the ways that I was raised money last year.I encourage others to find a hydrocephalus assoc walk if you live in the states.It's not only a great feeling being able to raise money,but it's also a great experience to go to the walk itself,and be around people who know deal with the same things that you do.

If you don't have hydrocephalus or even if you do and you don't have a walk in your area,I'm asking if you could donate if you can.I won't ask too much on my blog,maybe again later in the year.Thanks for reading.

Thursday, March 1, 2012

sleeping in general,from person experience..

I don't much about this subject when it comes in hydrocephalus is general.I know it may or may not have something to do with hydrocephalus.I haven't had a sleep study yet personally,but I know that some have a sleeping disorder but some can't find anything with it.Having sleep problems is common with people with hydrocephalus,but not everyone.It all just depends on the person.

Personally it's something I didn't consider having to do with the condition until I started meeting others with it,and we began to learn about what we have in common.When I was a little kid I didn't have any problems,or at least none that I remember.For me it's a problem that started at the start of puberty,which is a whole different story and a more personal one.During that time I was a sleep walker,and did it almost every night.That wen't on for several years but it came to a sudden stop my senior year.Since then I've had problems falling asleep,and then once I do unless I'm in "crash mode" I can't get to the last step of sleep.This causes me to move around me,as in more than anyone should.Also more lately I can be woken up easily,then I have alot of trouble getting back to sleep.Not being able to get back to sleep isn't really new,but I was the kind of kid who could sleep thru,including a couple drug busts only a couple apartments down :)

I plan on going in for a sleep study,but I'm not sure when yet.When I do that I'll write about it,and then about the results.Thanks for reading.

Thursday, February 23, 2012

hydrocephalus assoc teacher's guide

I've already posted about how hydrocephalus has effected me in many ways.All these ways were unknown to me,my parents,and my teachers.I think it would have made the school experience for us (not just me) if more info was out there.Hydrocephalus Association has made a teacher's guide to it,I don't know who it gets sent to but it's out there now.I don't know when I'll be able to do it but I'll at least but at some point I'll like to help get this out to schools,maybe provided with more info.Below is the link for it,and thanks for reading..

Thursday, February 16, 2012

why I haven't been writing as much

Sorry for the lack of blog entries after the last few weeks,I haven't been writing alot because of the state of mind I was in,which was a bad one.I've been learning alot of hydrocephalus lately and also been understanding more of how people think of me,for the first time since I was a teenager.Thinking of my future dealing with the both was really making me feel down.When I'm feeling down tends to be the best inspiration,and I hate that but it always helps writing about it.During the last week I'm starting to finding peace in it and being able to know about it but not constantly think about.Dealing with how people think of me is a whole different problem and will take a while to fix that.There's also a couple things that will help with that and both are things I've always struggled with,I can blame both on hydrocephalus but I'm not gonna get too much into it.One is communication and that's hard for me because I've been self conscious about my speech since I was a little kid.I don't mean to sound preachy,but the other is getting closer to God again.It's been quite a journey and I've been backsliding since Junior high,sometimes worse than other times and lately it's been worse.No matter what's going on it always seems easier with him,so if you want have the need for something better just let me know and I'll let you know everything I know.Sorry if you believe the opposite or you really don't want to see this on my blog but it's something that needed to be said.

So while I continue to be at peace with this,it does mean that I'll probably not be writing every other week,for now it's something that I'll be posting whenever I can think of something to say and I'll try to figure out how often this will be so it can be on a regular basis again.Thank you for my patience with me even if I said I'll be writing twice a week.If you read this,and don't have facebook or twitter than I can send you a e-mail everytime I write something,just e-mail me at, and thanks for reading :)

Monday, February 6, 2012

ankle surgery in clubfooted children

Sorry I haven't blogged this week,I was sick so I couldn't make it to the library..

I'm gonna try to continue on talking about side effects of brain damage hopefully on Thursday.Today I'm going to talk about a surgery that my Dad got me out of as a kid,before this past week it's something I knew very little about.What I knew or at least understood was that because my wasn't straight,and the reason for that had something to do with Hydrocephalus but I never knew how.I also knew that the surgery would have involved shattering my ankles,putting in screws (or pins) so they would grow straight.

I found out this week that the correct term for him it "clubfooted",and it's more common with kids with Spina bifida,Cerebal palsy and dandy-walker syndrome.Two of the three (dws amd sb) are common causes of Hydrocephalus but that I know it's unknown how I developed it. I also learned this week that the cause is Abnormal muscle pull.I haven't had the chance to really look up what abnormal muscle pull exactly but it's better than not knowing anything.Some more info I've found out about the surgery so far is that in the early years of the surgery they didn't use screws or pins,they would just shatter the kid's ankles and then put a cast on it,and that even if it's been controversial (for obvious reasons) the entire time it's been around (50 years) they have yet to come up with a better way of fixing the problem so the surgery is still be performed currently.I also found it out it could corrected by braces,and the surgery should be a last resort.Also that it's common the problem will come back.

Below is a link for more info about the surgery,and thanks for reading.

Thursday, January 26, 2012

neuro side effects at work

Today I'm going to talk more about the neurological side effects of hydrocephalus and brain damage/injury in general.For more info read my last blog entry .I'm going to focus more on the ones that I've struggled with the most on how they've effected me at the different jobs I've had,hopefully in some way helping others. The ones I've struggled with the most are speech,vision,muscle strength,memory problems,balance,coordination,organization skills,keeping/breaking habits,and clumsiness.Out of these few of them have really made a impact on my work,but it's differents for everyone.I recently found out that alot of people with multi task for example but that's something I've personally never have had trouble with,it's actually something that I've been good at.

The ones out of these that I've struggled with the most while working is memory problems,organization,and not being able to keep a habit.Other than the ones listed above I've also struggled with are ataxia,the inability to focus,and also my emotions usually having to do with anger.It's hard to find info about what emotions has to with hydrocephalus online,unless it's about kids and adults dealing with emotions after or before surgery.The only reason that I know it has something to do with hydrocephalus is because of others with the condition that I've spoken to online.

The first job that I had that I really I really struggled at was Peter Piper Pizza,at least when it came to neurological side effects.Unless you live in Arizona you probably don't know what Peter Piper Pizza is.It's a Pizza chain in Arizona with a large dining room,and also a game room.Like it's main competer,Chuck E Cheese it's a place that mainly used for birthday parties,youth sports pictures,and for families with children. It was the only job I had where I couldn't focus sometimes.It would mainly be when what I was doing wouldn't keep me busy enough,and my reaction to that would usually be losing focus.At Peter Piper Pizza one of my main jobs was working the prize cabinet, which is where kids and and sometimes their parents would come trade in their tickets they had won from the games for prizes.It sounds really simple but I also had a problem keeping the toys and prizes where they belonged and they were just end up on the ground alot,and over time it would really start to pile up.This was mainly caused by my ataxia because my hands always shake so it's hard for me to do anything with my hands,and also not being to keep the habit of just picking it up each time.Something else that my ataxia caused me to struggle with was replacing the receipt tape for the ticket eater because you need to steady hand to be able to get it in correctly,I ended up having the same problem during the first several months that I worked in the produce department at my current job.A ticket eater is the machine that you feed your tickets into so it could count them and print up a reciept instead counting the tickets by hand.I also would bring the game keys often without knowing it until I got home,because I kept it in my pocket I wouldn't really think about it.

Except for my current job,my only other job was at a italian resturant where I was a busser for two years.My coordination and memory was a problem at times,for example the two years I worked there I never was able to memorize the table numbers.Also something a problem that me memory caused was trying to remember which customer I was getting something for,didn't help when they wouldn't make eye contact with me when I came back.Other than that the only other problem I had their that's worth mentioning had to do with closing.It was the closing busser's responsibility to be tipped out by the servers,write down how much I got from each server,keep that money on them and then split up the tips at the end of the night.Not only would I always forget to bring my pen to work,but I'll also forget to get change before closing,and on occasion I would lose track of money,something I've personally never been able to do well with my own money.

I've been working at my current job for 4 and a half years now,and I've been working in the produce department their for almost a year.organization,memory,ataxia,and keeping a habit.As a courtesy clerk I had trouble with the bags,they would stick togheter alot anyway but my hands didn't help either.I would also let empty bags pile up in my work area,but that was the worse of it.In Produce clerk I'm in charge of the cut fruit program which consists of fruit trays,melon slices and also "fruit cups".I've had problems making it a habit to do alot of the small things that has to do with the job like making it a habit to fill out my melon log.Another problem I've had is to remembering to let my manager know what I need for the order and once in a while that means going with out some supplies or getting it from another store.This is also my first job where I know what's causing these problems so it's alot easier to work on getting better,and I know I can overcome these obstacles like I've done or at least worked on for many others.

I plan to continue talking about this subject next week,but more about how it's affected other parts of my life.Thanks for reading :)