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..
Thursday, October 25, 2012
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:)
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.
http://www.ehow.com/facts_5254993_signs-symptoms-mental-fatigue.html
http://www.brainharmonycenter.com/brain-fatigue.html
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.
http://www.ehow.com/facts_5254993_signs-symptoms-mental-fatigue.html
http://www.brainharmonycenter.com/brain-fatigue.html
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.
http://en.wikipedia.org/wiki/Billy_Graham
http://www.wral.com/news/state/story/2433569/
http://www.billygraham.org/
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.
http://en.wikipedia.org/wiki/Billy_Graham
http://www.wral.com/news/state/story/2433569/
http://www.billygraham.org/
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.
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 :)
http://tvtropes.org/pmwiki/pmwiki.php/Main/SpeechImpediment
http://en.wikipedia.org/wiki/Tasmanian_Devil_%28Looney_Tunes%29
http://en.wikipedia.org/wiki/Joe_Dougherty
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 :)
http://tvtropes.org/pmwiki/pmwiki.php/Main/SpeechImpediment
http://en.wikipedia.org/wiki/Tasmanian_Devil_%28Looney_Tunes%29
http://en.wikipedia.org/wiki/Joe_Dougherty
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.
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