Saturday, January 26, 2013

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.
The second link is for the Phoenix Hydrocephalus Walk.
The third link is for the Great Pumpkin Race.
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.

Saturday, January 12, 2013

One year ago..

One year ago,I posted my first entry for my blog.A friend/co-worker had seen some of my facebook posts and he inspired me to go bigger,even write a book.It was the first time I was going to sit down and write something in at least a few years,and I didn't know where to start let alone write a book.I knew that writing a blog was the best option but I don't know much that I could write about on a regular basis.I ended up picking "neurological disorders",because rather it's recognized or acknowledged at all it's something that's effected me in every day my whole life.I may not know as much as others,but I have learned a lot about it during the last few years.There's also a lot I know about it that I didn't have to find out from other people with the same condition that I have,or other sources.While most of what I dealt with growing up was a mystery to me.I knew that a lot of it had to do with my neurological problems,rather I knew what it was exactly or not or even if I didn't have proof.I also want to continue to find out more about brain injuries and the specific neurological disorder that I have.I wanted to help others,and reach out to parents of kids with Hydrocephalus specifically but also others living with it.During the last year I've met my goals for this blog,and I hope to continue educating myself and others.I'll like to write a book eventually once I can focus on it,and gather enough accurate info for the subject that I've picked.For the time being I wish to keep the subject a secret,except for those that I'm the closest to.

If you haven't followed my blog at all and either recently or just now found it I have a neurological condition called Hydrocephalus.Hydrocephalus means "water on the brain" and it's basically a back of cerebrospinal fluid in and around the brain.1 or 2 out of every 1000 babies are born with this condition,and many others develop later on in life.Causes of hydrocephalus after birth include other neurological disorders,head injury,sickness or unknown causes.In my case,the cause is unknown and no one knows if I was born with it or not.I started showing mostly rare symptoms of it as a infant,but because of that I wasn't diagnosed until I was 17 months.Since then I've gone 25 years without needing a revision,22 years of barely any noticeable problems with my shunt and had a 18 year period where I had no CT scans.I only needed to see my neurosurgeon once in that period of time and wen't several years without any contact with him needed.The lack of surgeries or even hospital visits is the reason why I decided to do my blog on everyday experiences instead,because what most kids with hydrocephalus experienced was all foreign to me.

Before I stopped writing a few years before I started this blog,I had almost always wrote on a regular basis in one form or another since the 3rd grade.I had a teacher that changed my mindset on writing from something that I hated doing and always tried to get out to something that I could get really creative with and enjoy doing.Rather or not I was given a vague subject or if I could pick something out I was enjoyed it all the way through my senior year.I probably put the most effort in it than other subjects,and I was normally a overachiever when it came to writing.Near the end of high school and until I got my first job,I put a lot of the anger and other emotions into poetry.At first for English projects and then as a hobby after high school just because it was something that worked.For a few years after high school I continued writing either when writing e-mails or on my "Myspace blog".But as I started to get into Facebook I used my Myspace account less and less.Because of a lot of the people I knew joining it too,I no longer felt the need to contact on a regular basis with E-mail with them either.

Thanks for reading,I hope to have another year of researching and writing.I also hope that rather or not this is your first time reading or you've been keeping up with my blog for a while that you will be able to learn something,or a lot this year.