My experience with missing major hydrocephalus symptoms as an infant.

 My shunt was placed when I was 16 months old. But I was showing symptoms long before that, possibly as early as when I was born. But it only became obvious that something was wrong with me when I missed multiple milestones. My major symptoms were missing milestones that involved having to pulling myself up. I was eventually hitting them, but it was a very slow process. My other major noticeable high pitched screaming. But I was either missing the majority of the others, or they wasn't noticeable enough for my Parents to get a referral to a neurosurgeon. What got me my referral was a nurse at a free clinic noticing me. She showed up to my Parent's apartment did head measurements, and got me a referral to my childhood neurosurgeon. It all happened so quick that my Parents didn't realize what was going on in time to thank her. My developmental delays that I had as a infant immediately got better. I had other delays that I still struggle with, but most of them got way better with different therapies as a child. Most of them are normal with people with hydrocephalus, or other neurological disorders. But there are two that my parents were told directly involved my late diagnosis. Those two are my speech impediment, and my hand tremors. I couldn't speak until I started speech therapy in Preschool. It slowly got better, but it got to the point in high school where being pulled out of class was a bigger issue than not getting the last few years of speech therapy I would have gotten before finishing high school. My hand tremors started around the time I started puberty, and hasn't stopped since then. My current neurosurgeon told me that it's not necessarily because I was diagnosed late, but it may have been caused at that age because of certain hydrocephalus symptoms coming back, or starting later on in life. I'll talk about both more in future posts. I'm hoping to write another post this week, about my experience with a lack of shunt malfunction symptoms this week.

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

Self-Image/Self-Esteem

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

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

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

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

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

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


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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 :)

ataxia

I've decided that I'll be posting on Mondays and Thursdays on a regular basis.Thursday because it's usually my day off and Monday because it's about half way through my work week and I already know I won't be able to post during the weekend. However sense I have to post them from the library for right now I won't be able to post on bank holidays,but I'll let everyone know ahead of time.

Today I want to talk what has affected me the most,as least when it comes in hydrocephalus.It has affected how people see me more than anything,and sometimes it's affected how I function.It's also the main thing that caused me to take longer to learn things that other kids were able to learn alot earlier.It's also something that my parents were never told about when I growing up,causing them to wonder if it could be because of how long it took them to diagnose me or if it was something worse.

My topic for today is ataxia,which means "lack of order".It's a neurological symptom that usually stops after treatment (shunt placement or ETV for Hydrocephalus).However along with other symptoms it's not something that always goes away. It causes the nervous system to not work properly,and that results in a lack of Motor coordination.This may have been part of the reasons why I couldn't even hold myself up until my shunt was placed,but I know it has to do with alot other problems I have or had. I couldn't even speak until I was in preschool and it took years of hard work before I even got to the point where people could understand me,which is really disappointing now because of the chronic headache and daily migraines during the last couple years because my ability to speak is back to being worse as it was when I was about 10.So after all that hard work I'm back to the point where people can't understand what I'm saying.It also has affected my hands,to the point where I couldn't open door knobs as a kid,and that's something else that I've started to struggle with that again.It caused me to not be able to tie my own shoes until the fifth grade,something I was really ashamed of.The last thing it really impacted me as a kid was getting potty trained.I caught on while I was still young but it was after elementary,and it ended up being one of the things that started years of constant bullying.

Ataxia caused my hands to shake constantly started when I was about 8 or 9 something that was thought to be caused by early signs of Parkinson's,something that I'm very thankful that it's not.It was also thought to be caused by being hyper,I've always been borderline adhd.I was diagnosed in elementary school but I was tested again my senior year and found out that I don't have it.Something else that I thought that I had caused it was my late diagnosis,and that caused me to be angry with the doctors that had told my parents that I didn't have hydrocephalus,and that there was nothing was wrong me.I'll never know if ataxia would have affected me differently or if at all if I would have been diagnosed earlier but it's also something that I'll rather now know,thanks for reading.