Phoenix Hydrocephalus walk/Great Pumpkin Race

I was going to talk about these two events soon after they happened, but I was taking a break from writing when I attended both of them. This past November I participated in the Phoenix Hydrocephalus Walk for the second time. Also in October I participated in a local event in Tucson, the Great Pumpkin Race.

The Phoenix Hydrocephalus walk is one of many charity walks for Hydrocephalus that the Hydrocephalus Association puts together each year. Each walk is put together by volunteers who live in the area. I’m unsure of how much was raised all together in 2012 from the walks. But the Phoenix Walk alone raised 28k this year, over 10k than the year before. Like the year before, it was one of the first times I’ve been part of something where there were many people around with Hydrocephalus and I’m still getting used to hearing the word “Hydrocephalus” spoken outside of close family and doctors, even when it’s brought up when I’m with friends or coworkers. This year I had the opportunity to meet a “Facebook friend” and her family. She has two kids (twins) that both have Hydrocephalus.

The second event I attended was The Great Pumpkin Race. It’s an annual 5k race/walk that’s put on near Tucson at Bucklew Farm. It’s an event that has been held each year since 2006. It’s put together by another “Facebook friend” that I met for the first time in person during the event, Thomas Tronsdal.  His son has Hydrocephalus, and the money raised during the event goes to University of Arizona Medical Center’s Department of Surgery and Neurology. The race goes through the farm fields and ends in the corn maze. This year like with Hydrocephalus Walk, was a big success with over 700 people attending.

If you or a loved one has Hydrocephalus has it, and you live near a larger city in the United States, then I encourage you to participate in a Hydrocephalus Walk, Support Group or whatever is involved in your area. You don’t have to necessarily raise money, but it’s a great opportunity to do so. Just by meeting others with the same condition it will give you a whole different perspective on living with Hydrocephalus and going through what you have to. Thanks for reading :)

The first link is for the Hydrocephalus association where you can find events behind held near your area, and get more information about current studies, general information, and more.

http://www.hydroassoc.org/

The second link is for the Phoenix Hydrocephalus Walk.

http://walk4hydro.kintera.org/faf/home/default.asp?ievent=1018971

The third link is for the Great Pumpkin Race.

http://www.azroadrunners.org/races/detail/pumpkin

The fourth link is for The Arizona chapter of The Pediatric Hydrocephalus Foundation. It’s new so there’s no other link I could find for it other than it’s Facebook page. The Chapter Director is yet another person that I’ve met on Facebook, but it’s someone that I haven’t met in person, at least not yet.

https://www.facebook.com/pages/Arizona-Pediatric-Hydrocephalus-Foundation-Inc/410820155649236

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:)

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.

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 feelings...no 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!!

importance of brain trauma awareness/research

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

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

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

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

 http://www.braininjuryforum.com/

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

http://gabrielslife.org/