Friday, September 18, 2015

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

Friday, August 7, 2015

Media views on Hydrocephalus: Melon heads legend

Instead of a detailed description of this topic, I'm going to post a variety of links. In some versions of the legend of the "melon heads" are actually children with Hydrocephalus, but in others they are not. The legend dates back to before there was modern shunt technology so at that point it often went untreated. In a way I can see how some of the character traits of the melon heads may have been seen in people with untreated Hydrocephalus, which of course was exaggerated. I'm sure that it was insulting then but now that the description of the melon heads doesn't even come close to most who live with Hydrocephalus. I saw a pretty accurate of Hydrocephalus although vague on several sites there's no mention of current treatment and ways of life, so it could give people a bad description of people living with the condition. Even if they look more into it, or know someone with it, it might make them believe that's what we're like at least in a way, no matter what.

Friday, July 17, 2015

Writing therapy

At the point I have about 5 months of backlog, but there's some things that I need to get off my chest and personally the best way for me to do this is through writing. I've already started to tackle some of these issues privately through close and trusted friends and will continue doing that with matters that need to or I prefer to be private. At the same time I'll be using this blog for things that I don't mind being public. I don't expect to get much feedback when I'm using my blog as "writing therapy" if at all but it still helps a lot more than keeping it to myself, and I've figured out solutions just by writing my thoughts.

I'm going to start with a problem that was a bigger problem growing up in the church, and problem affected my grades in school than it has been in any part of my life (but thinking about it, it has probably had some kind of negative affect on every part of my life). My topic for this post is giving up easily and ended up not finishing a task, especially when it's something that needs to be done in writing. It's discouraging to think about it but it's something I've been working on reversing for a few years. It's also definitely Hydrocephalus related but it's a state of mind that can be caused by other underlying problems. It's a personal topic, but it's something that I know it's something people can relate to, with or without Hydrocephalus, or even a learning disability. I also mean it as a warning, so whatever it is they would cause someone to not do as well, rather it's grades in school or something else that at least partially they can at least start to overcome the problem earlier than later. I don't mean to say that it's a problem that everyone who see's this has, but based on prior research I've done for my blog and communicating with others with Hydrocephalus during the last several years I can say it's pretty likely.

Thinking back to school it was probably the biggest problem in the classroom, when it came to note taking. I couldn't focus on writing what I heard very well unless the teacher was very persistent about it, which I hated back then but I'm very grateful for it now. I could have gotten a late start to it but I wouldn't because I felt like a failure from the start. I had the same problem when it came to keeping up with planners and similar things, especially when we had to fill them at a certain time altogether in class but the idea was dropped a few days or a few weeks into the school year. That didn't matter though because I remember actually thinking from the very start that it wasn't going to work out so I didn't even try it out. I should have tried to think of a solution or approach someone for help, but at that point (6th grade), I had already grown to hate school. The transition from Elementary to Middle School ended up being a bombshell, and I made a personal decision to not really try at all, which didn't change until the last year or two of High School. I'm not sure how I ended up only being one semester late to graduating or how I finished at all. The result of not taking notes or trying to keep up with a planner was constantly forgetting homework assignments especially after I decided to not really care in the first place. The result of both not taking notes and not doing homework assignments were failing tests. The obvious end result was failing half my classes and having to take some classes up to 3 times. If I knew then what I knew now, I definitely would have pushed myself harder to write notes even when it wasn't seen as necessary (as in when reading a text book) because just by writing something down helps me a lot when it comes to processing that information. Like at work I need to write a list to remember what needs to be put out next (I'm a Produce Clerk for a division of Kroger). If I don't do it my memory fails me and I usually don't remember anything. If I do write down a list however I usually can remember everything that needs to be put out without having to go back and check the list. If I had done this in school I might have passed a few tests.

I grew up in the Evangelical church, and except for a 2 year period when I first really start to get fed up with the way my life was going, and how that related to God and Church. I've dug deeper on this subject before and I intend to again in the near future. Something that really frustrating me for a long time which really frustrated me as a kid, and in a different way as a young adult until I left the church a 2nd time was the note taking issue. When I was a kid it was filling out a little form in Sunday School, where there was a part typed up already and then a place that needed to be filled out. I recall started it usually but then I would lose my focus, and give up as soon as I missed something. There was a 2nd assignment that we had to do during the week that I always managed to not do, so that didn't help to encourage me to push myself a little bit harder.  When I got old enough to be expected to pay attention to a sermon, which was made worse when I decided to switch churches and taking notes was sort of expected. I couldn't process information from the sermon well, and I still had the same mind set that I had when it came to taking notes when I was in High School. Also when I got older everything switched to a bible study format which caused a lot of different other problems which I'll touch on at another time. 

There might be (and probably is) a bigger solution but what I know now that I wished I would have known earlier is being encouraged to (which usually means encouraging myself) to just pick up where I left track because it would help a lot more to miss a few points than to miss the whole thing. It's a really simple concept but if it wasn't obvious to me, I can assume that it might not be obvious to other people as well. I hope that the most recent time that it was mentioned to me wasn't the first, but it was better timing than any other time since I'm in the process against a lot things where the underlying cause is Hydrocephalus. It also fits in well with one of the major things I've slowly been working on, persistence. It's a uphill battle and I'll probably never get my persistence to the point where it could be if my skull wasn't a fish bowl and if I didn't have medical tubing pushed through my brain. If you're not aware of what any kind of brain damage or neurological disorders can and will do to your brain, I'll probably get crap for doubting myself and talking about persistence at the same time but unfortunately it's the truth. 

For anyone that's in school, or has a kid with Hydrocephalus or a similar condition that results in a learning disability I want to close with a tip. I'm not professional at all unless you need someone to pick out a good avocado or watermelon for you, but I'm writing this from my own experiences and what I've learned through personal research and paying a little more attention the last few years. My advice is to write down as much as possible (or at least when possible). I assume taking notes in class can be rough, but it might really help when it comes to studying at home. With notes it's might help to reminded that it's okay to miss some points as long as you try to focus again after you realizing that you're missing those points.

When it comes to church just being aware that it's okay to miss points during childhood Sunday School would have helped a lot. Taking notes will stick suck rather, and I'm glad that it's something that I don't have to worry about. The church I've been attending on and off for four years consistently has forms that is somewhat like the ones I described having in Sunday School class as a kid. I make it a point to always to fill them out, and just by doing that helps a lot. This is also something I wish I would have known a lot. I know that people who read my blog has many different views on religion but if you do ever attend some kind of religious service I definitely recommend trying to take some kind of notes, even if there's no form provided.If you have a kid with Hydrocephalus or a similar condition or are a Sunday School teacher or have a similar position to a kid with some kind of intellectual disability, no matter how small of one it wouldn't hurt to use a reminder if you see someone struggling. Again, I realize that not everyone can relate to the church part but I write a lot about personal experience, and it was a really big part of my life when I was a kid, and it's starting to become a big idea again but from a different perspective. 

Thanks for reading, I really hope you the reader got something encouraging out of this.

Friday, June 26, 2015

Pinky and the Brain's Neuroanatomy of the brain (video)

Neuroanatomy of the brain (song about the ventricles of the brain) from the Steven Speilberg cartoon Pinky and the Brain that was on from 1995 until 1998.

Friday, June 5, 2015

Hydrocephalus and sensitivity to noise

According to the Spina Bifida Association there's no studies related to this specific topic, and I couldn't find much information outside of that site and a similar site. This is something that I sort of realized that was Hydrocephalus in at least Middle School, a few years before I started looking more into my condition (Hydrocephalus). It's not something that everyone with Hydrocephalus experience but it's common, and I've met many others online who have Hydrocephalus who deal with it. The sources I found refer to it as something people with shunts deal with, so it seems like it's something that has to do with the shunt specifically. Both sites that I found have to do with Spina Bifida instead of Hydrocephalus though. The two most common noises according to the sources I found are high pitched and loud noises. There is a range of reactions to noises that people can have, and for those that have seizures it can be a seizure trigger. There is no known treatment for those that have it as a side effect to Hydrocephalus but in general audiologists and ENT physicians can use a desensitization technique. Personally I've had sensitivity to high pitched noises since at least around the 4th or 5th grade and probably longer but I can't remember any specific situations having to do with it before that point. Except for being skittish I wasn't really sensitive to loud noises until I was an adult and now I'm sensitive to most noises. Especially with high pitched noises my reaction has always been anxiety, but in a way where it's not really noticed. Thanks for reading, I'm planning on writing about similar subjects or asking others to do it in the near future.

Friday, May 15, 2015

Media views on Hydrocephalus: Hydrocephalus and Grey's anatomy (guest blog by Berkley)

If you’re like me and watch Grey’s Anatomy religiously, you may have noticed that, in the earlier seasons, they mentioned “hydrocephalus” quite regularly.
I’ve watched the show from the very beginning, and every time there was an episode with a storyline featuring a patient with hydrocephalus, it made me SO SO happy. This is my absolute favourite (sorry, Canadian ;) ) TV show, and so having such a popular show talk about a condition that many know very little about just amazes me.
The condition has gained a lot more attention in recent years, and I personally feel that Grey’s played quite a big part in that.
One of my favourite episodes that featured hydrocephalus was the one where Karev had children flown to Seattle Grace Hospital, and a little girl named Zola was one of them, and she had Hydrocephalus AND Spina Bifida. Her story was carried out over several episodes, so this made for a season that consistently mentioned Hydrocephalus, and, this was probably my favourite season, for that reason alone.

-Berkley (@HydroChica)

Monday, April 27, 2015

Drinking and Hydrocephalus

This subject is different for Hydrocephalus and alcohol and a lot of medications don't mix and if you have a seizure disorder drinking should be done cautiously if at all. This is from my knowledge and so it should be taken only as my opinion, but many if not most doctors will say they the same. I use to a lot heavier than I do now and before I had problems with my shunt I would barely feel it the next morning. As my health got worse I also started to drink even more, which I realize was a pretty bad idea. I would feel more of a hangover and notice it colliding with my shunt and Hydrocephalus so I stopped. I drink a little stronger liquor but very moderately, so most of the time when I drink I'll have a few beers instead. My neurosurgeon and other doctors know about it and I don't really get drunk or get hangovers considering I'm sticking to one thing. Others get hangovers that are similar to shunt malfunction symptoms which is normal for people without Hydrocephalus but is something that can be really scary for us. It can react with the "Hydrocephalus" itself as in cerebral fluid and our shunts, sometimes in bad ways but not always. This just always depend on the person. It's a good idea to drink in some kind of moderation, but that also applies to most people. My point is that if someone younger or is afraid to drink but wants to Hydrocephalus doesn't always mean not drinking.

Friday, April 3, 2015

(Guest blog by Mikayla) Weather and shunts

(Thank you for this opportunity.)

In regards to the shunt putting up a fight when the  weather changes, its plain and simple, your shunt is going to give you grief at one point or another no matter what the weather is doing.

I myself find that when it is really hot I have the most trouble and I tend to get reasonably troublesome headaches, I have also found that really cold temperatures bring on some pretty nasty headaches as well.

I can't really speak for anyone, I can't tell anyone what the weather may or may not do... I can however, and with pride might I add, say that no one is alone with this, maybe under other circumstances you are, but hydrocephalus is something we can work through together, and the weather, be it; rain, sun, snow or hail, can't stop us in our journey to be unique in a way that only few understand.

Friday, March 13, 2015

Traveling alone with Hydrocephalus (and getting back into writing my blog)

This is the first post that of several that I'm backlogging so when I do eventually post this it will be at least a month or two after I actually wrote it. I got burned out but kept on posting for a while after usually not actually posting something the day or even week that I had planned to. When I went on the adventure this post is about I ended up abandoning this blog altogether and have only written one substantial post since July. I enjoyed not having to think about it on a regular basis to keep on top of it and I plan on writing it now in a way that I don't have to anymore.

In August I spent two days traveling via Greyhound bus from Arizona to Iowa and then back two weeks later to be with one of my best friends for his wedding day. I wasn't told I couldn't fly and I haven't been given the impression from my neurosurgeon that it would be in the past. I am however having shunt problems and the idea of that and elevated pressure made me feel uncomfortable. Also not counting meals taking the Greyhound is usually half the price of flying. Some people with shunts have problems with flying but others have flown many many times without having a problem. If you want to know if you can fly or not your neurosurgeon would be your best source the majority of the time.

The other problem was that it was my first time traveling out of state (I've gone up to Phoenix a few times alone prior). I really didn't want to bring it up to random people I sat by on the bus or especially in stations so I got a medical id bracelet instead. If something went very wrong my bracelet would have been noticeable and I had all my contact info in my wallet. Of course it would be more risky for people with other conditions like epilepsy for example or if their shunt malfunctions more on a regular basis. I made it up there safe and really got to unwind for a couple weeks.

My anxiety level because of the smallness of the town and not knowing other people except for the two people I was visiting and a few others I met while up there, I'm sure it would have had the opposite affect with some people. I felt noticeably better when I was up there except for allergies because of the lack of pollen in Arizona, and I slept better. I made it up there and back safe and I took advantage of the medical id by going alone to the Hydrocephalus walk in Phoenix in October.