Phoenix Hydrocephalus Walk 2023

I've had a noticeable amount of views on my prior hydrocephulas walk posts recently. They had T-shirt pick ups for 2 years due to Covid. They had it at SkySong last year, where they'll have it again this year on October 28th. Unfortunately it's looking like this is the first year since I started going in 2012 that I won't be able to attend. The venue has a large parking lot where they have registration, booths, games etc. set up. The path they use for the walk itself is great. If you're coming from out of town there is a hotel right next to the venue, and a Motel 6 close by near the zoo. Last year I stayed at a affordable Air BnB that was a mile away. Public transit is available very close to the venue. The Great Pumpkin Race in Tucson raised money for both UMC/Banner Health Neurology department and the Hydrocephalus Association at certain points after I started attending around the same time I started going to the HA walks. The last one was in 2019. It was started for one of the Co-Host's Son. He is now a Uni Student it is highly unlikely they woukd start up again. There is a link to Phoenix HA Walk page below. Thanks for reading! https://secure2.convio.net/hydro/site/TR/WALK/General?fr_id=2051&pg=entry

Hydrocephalus awareness month, Phoenix Hydrocephalus Walk and Great Pumpkin Race (in Tucson)

I haven't posted in a month and a half, and I'm probably be going to write a little less frequently again. I have some backlogging done and a list of topics I'll like to research and write about in the near future. I'm not gonna be posting the backlogs yet because I want to go back and rewrite because I'm confident that I can make them better. When it comes to writing and rewriting posts I've started putting it off again because I don't want to rush through posts, and have them lack in quality. I also want to keep my mind on other things instead of Hydrocephalus, which includes losing the desire to write about. I'm going to try to start another blog about other things that interest me so writing about Hydrocephalus wouldn't be a buzzkill.

I've still been keeping up with my blog stats, so I still know which posts are frequently the most popular and which keywords people are finding my blog by. So I'm going to talk a little bit about each of the 3 main topics that people have been searching for and only finding older posts.

The first is Hydrocephalus awareness month which is the month of September. I usually post a lot this month on my personal Facebook but I've only posted anything Hydrocephalus related at all this year because of the same reason that I haven't been writing. There's several Hydrocephalus foundations that are doing some pretty cool things this month mostly via their social media pages. I'll leave links for a few of them below so you can check out what they're doing or if you need help from them.

There's many Hydrocephalus Association walks each year but I only post about the one in Phoenix because it's the one closest to me, and usually the one that I attend every year. In previous years it's be held at the Phoenix Zoo and last year it was held at Steele Indian School Park. This year it's going to be at Freestone Park in Gilbert on October 24th. If you're like me and you have to take public transportation to get there, there's about a one mile walk (it might be a little shorter) between the closest bus stop and the park. From what I can tell by Google Maps there's a sidewalk that goes all the way from the bus stop to the park.

The closest hotels are along Superstition Freeway and about 4 or 5 miles away. From what I'm able to find there's not really any hotels on the nearby bus routes but there are some over near the Superstition springs center in Mesa. There's a transit center at the mall that has a bus take will drop you off close to the park. There's also buses that stop at that transit center that will take you to and from the Mesa Greyhound station, one that will connect you to the Light rail and a express bus that will take you to Downtown Phoenix. There's a handful of hotels to pick from in that area with plenty of restaurants, grocery stores and a mall. There's plenty of hotels to pick from on the Superstition highway with restaurants spread out and there's a couple clusters in the same area that has several restaurants in one shopping center.

The Great Pumpkin Race has been held in Tucson every year since 2006, and this year it's going to be October 11th at Buckelew Farm, I found out about it after I connected with the organizer Thomas Tronsdal on Facebook after seeing a post he had made on a Phoenix Hydrocephalus Walk page. I had been speaking to other people with Hydrocephalus in other States and even other Countries but he was the first from the same city. In previous The Great Pumpkin Race has benefited the UMC Neurological department and the Hydrocephalus Association but this year it will benefit The Arizona Center for Autism.

The Great Pumpkin Race is held at Buckelew Farm which is West of Tucson on Ajo Highway. so public transportation isn't a option. Breakfast is usually included at the race and there's other food and drink that can be bought at the Farm. There's a fun kids race before the 5k, and a free pumpkin comes is included in registration.

There's a few restaurants close by on Ajo Highway between the farm and getting back into town. If you're coming from out of town and need to somewhere the night before there's no hotels that I can find in the area but there are many that you can choose from in Tucson.

Below are links to both events and their Facebook pages.

Phoenix Hydrocephalus Walk

Great Pumpkin Race Facebook event page

Phoenix Hydrocephalus Walk Facebook page

Great Pumpkin Race

Below are links for some notable Hydrocephalus foundations that have things going on this month,


Hydrocephalus Association Website

HA Facebook

HA Twitter

HA Instagram

HA Google+

HA Youtube

Pediatric Hydrocephalus Foundation Website

PHF Facebook

National Hydrocephalus Foundation

NHF Facebook page

Hydro Angels Over America

HAOA Facebook Page

HAOA Twitter

Phoenix Hydrocephalus walk 2014/ Great Pumpkin Race 2014

I haven't written any posts in about 6 weeks because I went out of state for a couple weeks for the wedding of one of my closest friends. I missed the first post for August because it was a few days before I left and I was busy getting ready and I missed the second because I was in Iowa and it would have been really difficult to write a blog post with my phone. I've been keeping track of my statistics and I've noticed that there has been a couple people looking for information on the Hydrocephalus walk in Phoenix next month (I live a couple hours away in Tucson). I'm also going to include another Hydrocephalus (neurology in general) related event the weekend following the Hydrocephalus walk in Tucson.

There has been at least a Hydrocephalus walks in Phoenix before but it's been a couple years since the last one and all the previous ones were at the Phoenix Zoo. This year it's going to be at the Steele Indian School Park at Central and Indian School Park (300 east Indian School Road). I've never lived in the area and except for family reunions I've only been there a handful of times so I decided to check out the area online and figure out where I'll be staying and how to get there. The Steele Indian School Park is at the location where the Indian School in Phoenix was for many decades and if you don't drive or want another option other than driving the Metro Valley Light Rail has a stop right at Indian School and Central. The walk is October 4th and registration starts at 8:30am with the walk starting at 10am.

The Great Pumpkin race is going to be in the Tucson area on October 12th. It's a 5k at Buckelew Farms that raises money for the Hydrocephalus Association too. The person that puts the race together each year is Thomas Tronsdal who has a son with Hydrocephalus. The race starts at 8am with a kids race at 7:30am. Buckelew Farms is outside of Tucson at 17000 West Ajo Highway.

The links below provides information for registration for both events. Also for information about the Valley Metro Light Rail. There's no public transportation that will get you to the Buckelew Farms area and there is no hotels/motels really close that I know of but there are many on the connecting interstates that's close by (I-10 and I-19). I used different colors for the link so there would be less confusion about which links are for which events. The Phoenix Hydrocephalus walk is in red, Great Pumpkin race is in blue and the Valley Metro light rail information is in purple. Thanks for reading.



 http://hawalk.kintera.org/faf/home/default.asp?ievent=1098504

https://www.facebook.com/Phoenix.Arizona.Hydrocephalus.Association.WALK

https://twitter.com/phoenixhawalk

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

 https://www.facebook.com/events/820005214699988/

 http://www.valleymetro.org/metrolightrail

 http://raillife.com/2009/07/phoenix-light-rail-map/

What I wish I would have known about Hydrocephalus as a kid

I've probably already covered this subject, but now that I've made it half way to 100 posts (this is my 50th) I've decided to go back and write about certain subjects again. Some reasons is knowledge that I've gained since started writing, or things that I thought that I knew that are actually false. I want to reach people doing this, that I necessarily could reach when I first started this blog. Also if I write the same thing in a different way I also have a chance to help people that might not have understood the way I wrote it last time.

When I was 17 I knew very little about Hydrocephalus, even if it was something that I had since I was at least a toddler. The main reason for this was because I had only had one surgery, the shunt placement when I was about a year and a half. I knew that I had a shunt and where it was. I understood that I was dependent on it and what I shouldn't do to protect it. Different neurosurgeons advise their patients their parents to avoid different activities, and for me it was only one thing. My neurosurgeon told my parents that I shouldn't play contact sports. I also knew what my major shunt malfunctions so if there was ever a emergency with it that my parents and teachers (in Elementary school at least) weren't around then I would know what to recognize so I could alert someone right away. Thankfully it didn't happen during my childhood, but I was better off knowing it than taking a risk. I knew that my motor skills, and lack of muscle control had to do with it and that's definitely the hardest part for me, both now and then. I also always knew that I would need surgery at some point but I also figured it would happen in my childhood, and it never did. It didn't really get me down; it was just always something that was in the back of my mind but not something that I thought to hard about it.

It was my senior year of high school that I started to look more into Hydrocephalus. The site that helped me begin to learn about it the most and gave me a glimpse into the lives of people of others with the condition was Hydrocephalus Association. Just ten years there were still very few Hydrocephalus foundations and at the time HA was the only major one I could find. I did some serious lurking on Hydrocephalus/brain forums and e-mail groups but very rarely said anything. My main reason that I was hesitant to post was that I was having no problems with my shunt that I knew of and compared to how long the average shunt lasts before it malfunctions in some way my shunt was (and is) older than dirt. I wouldn't find out about all the smaller daily problems associated with Hydrocephalus until a lot later on with social media. If I would have known about the daily problems, and that I'm not the only one who has a shunt that has lasted far long that expected than I'm sure I would have taken advantage of at least the forums. I didn't look much farther into condition for several more years after that. I had no major problems at all until a few years ago so I had no reason to.

I had a few people with Hydrocephalus add me on Myspace because I mentioned it on my profile, but we but I would avoid conversation because I felt like telling anyone else with the condition how old my shunt was would make me look like a poser. I'm not sure if he was my first Facebook friend with Hydrocephalus but he was the first one I could remember at least. Around the time I started to have problems with my shunt request I got a friend request. Even if I don't know the person, I usually like to give people a chance to tell me why they decided to add me. With this person, I ended up not needing to ask once I took a look at his profile. He had everything I needed to know to keep him around in his "about me" section. He mentioned in it in his about me section that he has Hydrocephalus and that his current shunt has lasted him over two decades so far, and that the shunt that he had before that was one that he got as a kid. He was born in the sixties, during the first decade after the first couple of shunts started to be used. At the time he was born only 5% babies born with Hydrocephalus survived. It's the opposite today, but without sugar coating it people still die from Hydrocephalus or complications. It's definitely not a death sentence but it's not a condition that cannot be taken seriously and it's something that has effects of people's daily lives. It may be because of pain, but there are many other complications from it as well.

Through this one person I started to meet several others, and over the last four years my Facebook friends has slowly became more and more people affected my Hydrocephalus than people that I actually know. It sounds really weird, to both before who don't have the condition and even some people who do but it's been great always have someone to talk to if it's just something that someone without the condition won’t understand. Almost right away because of seeing the Facebook activity and having people with Hydrocephalus seeing mine, I quickly started to realize that a lot of things that I didn't think had anything to do with the condition is actually really common with it.

There are things that I didn't know for sure that had to Hydrocephalus but in the back of my mind suspected it for years. Some of those things included my lack of organization, problems with studying and short term memory. It turns out that a lot of the problems that I've had have to do with Nonverbal learning disability (not just Hydrocephalus).

You can learn about a lot of what Hydrocephalus or neurological disorders in general can cause just by searching for it online, though it might take a while and you really need to know what to look for. You can also find out about it with any of my blog posts that tagged with "brain injury side effects". It might sound kind of harsh by just putting it all under the subject under that one subject, because a lot of people with neurological disorders hate being thought of as having a brain injury. But a lot of the problems that people with anything having to do with neurological disorders are the same for people with traumatic brain injuries. It might depend on how you think of it, but having pressure on our brains (at least people with Hydrocephalus) and then having a medical device placed in our brains has to have some kind of damage to our brains, no matter how minor it is.

Personally, I think it's great to understand myself from information that has either been looked up by a Facebook friend, what I appreciate knowing even more is the little things that you might only be able to find out about by talking to others.

It's all stuff that I would have really liked to find out a lot earlier, but it's still comfortable to know that quirks that I had as a kid, that I never knew anyone else who had deal with it wasn't just me. It's sad at the same time but it’s comforting to know that I wasn't the only kid who would constantly lose jackets, school supplies and unfortunately a backpack once in a while. It's comforting knowing that I wasn't the only kid that had a hard time telling right from left, and had a reputation from getting lost and being left behind on the occasional field trip (I hope). Also that I wasn't the only kid who took forever to learn how to tie my shoes, and desperately try to hide it until I finally caught on. It's comforting to know that I wasn't the only kid (and adult) to constantly got crap for dragging my feet and not "walking straight".

The last thing that I mentioned sounds kind of weird and probably something that I could and should probably have been able to control. At least with dragging my feet usually it's something that I could help but I would have to really constantly have to focus on it. It's not something that I can prove but the first "Hydro peep" that I met on Facebook has a "Tennis shoe" theory. He's always had a problem with dragging his feet too, and his shoes are proof that he drags one for more than the other. I've always known that I have a problem with dragging my feet but it wasn't until around the time that I started having more major problems with Hydrocephalus that someone pointed that I tend to drag my one foot more than the other. The theory is that the foot opposite of the shunt is the weaker side so the foot on the opposite side of the body is more likely to be dragged.

 When it comes not being able to walk straight, it has to do with my ankles. It's caused my abnormal muscle pull, the closest thing to it that is commonly known is being "clubfooted" but the only images you would find on Google is severe cases. The ankles and feet don't have to be crooked to be described at that though. My ankles still aren't straight though, and I would get crap for it because it was close enough to being straight, that people thought that I was doing it just because I was "lazy". Constantly dragging my foot along with that didn't exactly help my case. It's most common with people with Spina Bifida, Cerebral Palsy, and Dandy Walker Syndrome. I don't have any of these conditions that I know of at least though, just Hydrocephalus. It's not uncommon with kids with another condition (like Hydrocephalus) to have it either, and it can be caused by other medical problems that aren't necessarily common muscle or neurological disorders. It can be fixed by leg braces and surgery, but both of them might not work. Braces were never mentioned as a option, and I didn't find out it could have been until I had help finding out about the surgery. I personally didn't have the surgery to fix it, and I only regret not wearing the braces. The surgery is controversial but it's still a pretty common surgery, where the ankles are broken and screws are put in to straighten them. I'm glad that I didn't have to go through that and I understand why my parents made the decision more now than I ever did as a kid.

Edit: We weren't charged for the appointment. But my Parents would have had to pay for the braces, if that was a even a option at the time. There was a 23 year gap between when the surgery would have happened, and when I found the information on it.

I've already got in mind what I'm going to be writing for my next couple of posts, and I needed to write this post to make any of it make much sense. Thanks for reading, and if this is the first time you've read one of my blog posts or only have a few times in the past, I promise most of them isn't this long :)

More information on foot and ankle deformities

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3221758/

Pediatric Hydrocephalus Foundation

 http://www.hydrocephaluskids.org/wordpress/

Hydrocephalus Foundation

http://www.hydroassoc.org/

Information on shunts

http://neuroanimations.com/Hydrocephalus/Shunts/VP_Shunt.html

Teacher's guide to Hydrocephalus,including a lot of information I wish was more available when I was a kid

http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf

recognizing the differences between neurological disorders and Attention Deficit Disorder.

My intentions are not to claim that all kids diagnosed with Attention Deficit Disorder are misdiagnosed, because there are many children and adults who actually have it. However there are many more that are misdiagnosed either because the problems they have are even misunderstood or just not looked into. I am one of many kids with a nonverbal learning disability that was misdiagnosed as Attention Deficit Disorder. I ended up never taking Ritalin for it, but it was something that teachers and others had fought to try to get me put on. Even though they were fighting to put me on Ritalin years earlier I wasn't diagnosed until near the end of elementary school (at least that I remember). I remember testing for it a couple times but I don't remember for sure which time I wasn't actually diagnosed. I do know that I tested out when I was either 18 or 19 when I was transitioning from high school/college to the work force with vocational rehabilitation. I know many others with nonverbal learning disability was put on Ritalin, some tested out or were taken off it when they were young. But I'm sure that there are adults who were misdiagnosed with it as kids who are still taking it.

Nonverbal learning disability is something that's common with people with neurological disorders, either something like Hydrocephalus or a Autism Spectrum Disorder. It is also common with people with Attention Deficit Disorder, but shouldn't be thought to be limited to it. Putting it very basically, it’s when people have really hard time processing information when it's not in verbal form. For a much better description and for information that you would usually not find online I posted the Hydrocephalus Association's teacher guide. It explains a lot of what I had to deal with as a kid but the information wasn't available to my teachers, parents or me so it was thought that I wasn't trying or at least not trying hard enough to do some pretty basic things.

Also there are other side effects to Hydrocephalus and brain injuries in general that affect how well people can pay attention including just simply not being able to pay attention for long periods of time to certain tasks, memory and organizational skills.

I really do encourage anyone with Hydrocephalus, or especially a child with it check out the information Hydrocephalus Association has posted. The same if you're just interested in learning about it and you're a teacher with a student with it or may have one at some point. I think there's a lot more than could have been done for myself and others, if people would have had better access to the information in the past. Thanks for reading.

http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf

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

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.

http://walk4hydro.kintera.org/faf/donorReg/donorPledge.asp?ievent=1018971&lis=1&kntae1018971=B14B57C99C6A467697AE42B6B1EB6398&supId=353848382

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..

http://www.hydroassoc.org/docs/A_Teachers_Guide_to_Hydrocephalus.pdf