Friday, May 31, 2013

Media views on Hydrocephalus: Zach Roloff

If this is the first time reading one of your posts or haven't on a regular basis, my main purpose of writing is to talk about Hydrocephalus related topics that aren't easily found online. This can range from my own day to day experiences but also includes topics that aren't necessarily about Hydrocephalus, but about other neurological problems and brain surgery. Today I'm talking about a topic that I've written about several times already. I've been writing about people who are in the public eye (including film characters).

This week I'm writing about one of the first celebrities that I ever heard about having Hydrocephalus. Most of the public figures with Hydrocephalus that I've heard about has only been diagnosed during the last couple of years, or I didn't hear about it until the last few years.

Zach Roloff along with his family, are the stars of the Reality Television show "Little People,Big World". Zach along with his parents have Dwarfism, and the show focuses on living life day to day with it. Zach also has Hydrocephalus which was mentioned during a few of episodes during the first season, when he had to have a shunt revision.

Something that I noticed at that and really appreciate now is that not only was it mentioned on the show but his Dad was able to talk more about it. That's something that is normally not mentioned by other public figures who have Hydrocephalus normally wont or cant mention. If it is mentioned than usually there are few details mentioned,or wrong information is given.

I posted a few links below providing some more information, and a clip from one of the episodes where his Shunt and Hydrocephalus is mentioned.Thanks for reading :)

Friday, May 17, 2013

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.

Friday, May 3, 2013

Media views on Hydrocephalus:Chi Cheng (of Deftones)

This is the first time I've written about someone that has recently passed away. I had found some info about his brain injury, and I was trying to find more when he passed away on April 13th.I decided to put off writing about him because I didn't want it to seem like I was writing about him just to get views for my blog because of how many people must have been looking him up that week. While I have some other ideas for what I want to write about, none of them is anything that I would have been able to finish on time.

Chi Cheng was the original bassist for the alternative metal band Deftones, and played with them for two decades until his accident. Chi was seriously injured in a automobile accident in November of 2008. He had spent the last four and a half years slowly recovering. He had several surgeries and after being in a coma, he was recovering at home and was able to at least move his limbs and he was starting to be able to speak. He passed on April 13th when his heart stopped after being rushed to the hospital.

I had heard about his accident, but I didn't think about what the result of his brain injury could have been. Recently I saw that he had surgery to replace a bone flap in his skull that was removed shortly after his accident. What caught my attention about this was that this is the same surgery that former state rep Gabrielle Giffords had and she was later had a shunt placed and diagnosed with Hydrocephalus. I decided to look more into, and I never found anything about him ever been diagnosed with Hydrocephalus however he did have surgery that treats it. The surgery he had is a ventriculostomy (sometimes also called or referred to as a ETV, or a Endoscopic Third Ventriculostomy).

I don't want to claim that he had Hydrocephalus, but the surgeries he had and the descriptions of what was going on makes it seem that way. I don't know why it may have never been brought up, but it's common that people who to be treated for the condition without finding out what it's actually called. What I do want to do  is use this post to raise awareness for people who may have gone through the same but was never diagnosed. I hope that I can encourage those people to look into it, and find the help that they wouldn't be able to if they didn't have a name for it.

I also want to use this post to encourage people to donate or at least bring awareness to a cause. The "one love for Chi" site was put up soon after his accident by a Deftones fan, and posted updates on a regular basis on Chi. You can even help her out by going to her merch page or leaving a donation on her own page. All the money earned goes to whatever needs Chi's family has now that he has passed, and also the Chi Ling Cheng Special Needs Fund. Thanks for reading :)

The first link is to the "one love for Chi" site

The second link is the Hydrocephalus association ETV Fact sheet,so the procedure that he had can be  better understood.

The third is my source that I used that talks about the second procedure that Chi had,the first being the bone flap operation he had.