Media views on Hydrocephalus: Roald and Theo Dahl

This is my third "media views on Hydrocephalus" post. It fits well into the original subject that I had chosen for my blog, and my previous posts on the subject are the ones that are most often searched for on Google, according to my blog stats. I have a number of people I've been planning on writing about, and someone had searched for something similar and ended up reading at least one of my posts this week. So if it's searched again, I want this post to be seen. Hopefully it's exactly what someone is looking for.

Roald Dahl was an author more commonly known as a Children's author, but he also wrote adult fiction and non-fiction, screenplays, short stories and also wrote for television. Some of his children's books included James and the Giant Peach, Charlie and the Chocolate Factory, and Matilda. Some of the screenplays he wrote Chitty Chitty Bang Bang. Some television shows he worked on includes Way Out, which was similar to Twilight Zone and several Alfred Hitchcock movies.

Dahl was married to Patricia Neal, he had five children. In December 1960, his middle child and only son Theo's son's baby carriage was struck by a taxi. This resulted in him developing Hydrocephalus. At the time there were shunts available for treatment, but it was a very new technology. At the time the shunts had a much higher failure rate than it does today (and currently half of all shunts fail during the first two years).It also had a higher chance of resulting brain damage if they not replaced right away.

In Theo's case his shunt had blocked six times in nine months. Each time he would go temporally blind and they were never sure that his vision would come back after each revision, or how much brain damage had been done. 

This inspired Dahl to develop a new shunt other than the Holter shunt that had been used for a few years at the time, and was the first successful shunt. During the next couple years with the help of Toy Creator, Stanley Wade he would succeed in the development of a new shunt. The main differences between his and the previous shunt was that the shunt wouldn't touch the brain during the placement reducing the risk of cerebral debris getting in and steel discs, which gave the shunt a wider area to drain the fluid.

By the time the shunt was Developed Theo no longer needed a shunt, but for the next couple years after (1962-1964) Dahl's shunt was used in two to three thousand children worldwide. This was Dahl's first major influence in medicine, but not his last. After his daughter died from measles encephalitis, he became an advocate for immunization. Then after Patricia Neal had a series of strokes, he created his own rehab treatment to help her recover.

I've been looking forward to writing about Dahl and his son more than authors, because of my childhood interest in him that in a way continues on into today. My third grade teacher had us read many of his books, At least six of his them that I can remember. We watched at least a few of the movies that was based on his books as well, and then I saw another in the theaters when it came out the year after I was in his class (James and the Giant Peach). I knew very little about Dahl himself at the time, but it's interesting to me now that the author that wrote all those books helped developed a medical device that has kept me alive the whole time. Thanks for reading; I plan on writing more "media views on Hydrocephalus" posts in the near future. But I'll be including some others and more guest blogs from my friend Keyt.

http://en.wikipedia.org/wiki/Roald_Dahl

http://www.telegraph.co.uk/culture/books/biographyandmemoirreviews/7930233/Roald-Dahls-darkest-hour.html

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3029661/

Rosemary Kennedy's lobotomy

I've written a couple times about specific famous people who have hydrocephalus,rather it's a celebrity or a character. I have many more people to cover in that subject,but I'll also like to bring attention to well known people who have had some other kind of brain injury or brain surgery.Today I'll like to talk about someone from a well known family,who isn't exactly well known herself.

Her three brothers who lived passed thirty were well known politicians, her oldest brother died in the second world war. One of those brothers was John Kennedy,the thirty-fifth president of the United States who was assassinated in office. Another brother was assassinated while running for president in 1968.

Rosemary was disabled from early on in her life,possibly because of a delayed birth depriving her brain of oxygen. Her disability was intellectual,and she had a low IQ.During puberty she began to have violent mood swings that her family couldn't figure out how to control.

Now as we're learning more and more about traumatic brain injuries,we can identify these problems. We can pinpoint why certain side effects happen,and in some cases at least how we can recover from them and overcome. But this was several decades ago and very little was known about any neurological problem. Also  the Kennedy's were already popular figures,although nothing compared to who they would be a couple decades later. So how they were seen were a lot more important than most people,and again because of the lack of knowledge about TBI her family at least in a way was ashamed of her.

In order to try to control her mood swings,her father had a surgeon give her a lobotomy. A lobotomy is basically a brain operation removing part of the frontal lobe,cutting off most of the connections to the prefrontal cortex. The purpose is to help people with psychological disorders. It has become less controversial and more common in the last couple of decades. But at the time the procedure was only several years, and they hadn't figure out the "right" way of doing it. In Rosemary's case they ended up going "too deep" resulting in a much more severe disability, and wasn't able to care for herself, or perform daily functions like she had been able to do before, including even communicating effectively.

I had a hard time finding websites or blogs,either that seemed to have legit information, if anything more than basic information. It seemed like every website I've gone to lately looking for information for this blog post had different information than the other. Usually I don't like to do this, because of how the site runs it tends to not have accurate information. But I used Wikipedia just because,in this case it was my best way of getting the most accurate information for this post. Thanks for reading.

Hydrocephalus in Ancient Egypt

I had heard from some sources that King Tutankhamen had Hydrocephalus and Epilepsy. Although I found more sources about him having Epilepsy than Hydrocephalus, there are more sources proving that the main reasons that people thought this are actually untrue. I was going to write about him specifically thinking that I was going to find accurate current information on the subject. Instead I'm going to write about Hydrocephalus in ancient Egypt, but still focus on King Tutankhamen some.

The reason they thought that King Tutankhamen had Hydrocephalus and Epilepsy was because of a hole in his skull that was thought to be from a operation to treat the disorders. But more current studies have proven that it was part of removing his brain after he died, during the mummification process. He did have a larger than normal head, which is usually a obvious sign of Hydrocephalus. Even if it's a sign that he might have had the condition, I couldn't find any sources about what may have caused his large head. Another not so sign that he may have had neurological disorders is something that may not be obvious when it comes to figuring out if he had the disorders or not. King Tutankhamen was disabled with clubbed feet and a cleft palate. While I'm sure most of these of these cases having nothing to do Hydrocephalus the combination of the two made me think of Dandy Walker syndrome. Dandy Walker is a brain malformation that often causes the person to have Hydrocephalus as well. People with Dandy Walker are known to be born with deformities include clubbed feet and cleft palate but not always both, and not limited to them. Once again, it's not a fact because of the limit proof of it but it's still a possibility. Although there's even less information on her, Queen Nefretiti was also thought to have Hydrocephalus. Her large hat was supposedly to hide her large head,because of how ashamed her and her family was that she had it.

In Ancient Egypt Hydrocephalus was thought to be from the result of incest,which was common. So in result the families were usually ashamed of them which explains Queen Nefretiti's situation. Since the shunt system was only designed in the last several centuries, other treatments had to be used and often people with the condition never received treatment and suffered their whole lives if they even made it past infancy. The treatment used in Ancient Egypt was Trepanning. Trepanning is the process of drilling a burr hole in the skull, and it was believed to cure neurological disorders like Epilepsy. With Hydrocephalus it may have been at least some what effective because it would have at least relieved pressure around the brain.

I'm posting links to the sources that I used,for further reading and thanks for reading,


http://library.thinkquest.org/J0111742/Trepanning.htm

http://www.norajean.com/Biz-Archive/Egypt/Hydrocephalus.htm

http://www.ninds.nih.gov/disorders/dandywalker/dandywalker.htm

Something worth talking about (Guest blog by Keyt Harrington)

I've had something I have wanted to talk about for a while. I mulled it around in my soggy brain for a while wondering if it would be too controversial. Because it's something that affects my life and I know many others, I have decided to jump in and take the risk.

My mother died in 2000 after at least 10 years of various illnesses from Cancer to alcoholism. Now, by saying that some might say why am I talking about something my mom can't defend herself over because she's gone? Well, good question. But, it's something that bothered me while she was still alive yet didn't really hit me until I saw a program on tv about it and later discussing it in therapy; Munchausen by Proxy.

Granted, those who have long standing medical issues such as mine and Tim's might know what it is, but those that don't, the shorter term for it is medical abuse.

Someone who suffers from Munchausen By Proxy (MBPS) has a need to make someone close to them such as a child sicker so the abuser can get the attention. Munchausen was named after an 18th century dignitary named Baron von Munchausen. He was famous for lying about his travels in order to get attention. It's very rare that anyone is diagnosed with MBPS and even more rare that anyone is ever punished for it for the simple fact that those who are the victims of it either are afraid to say anything or they are too young or even too disabled to speak up.

In most cases, those who are the abusers are either in the medical field or well versed in medical knowledge. My mother was both because she was an RN who was also an avid reader. She was the smartest person I've ever known, but it was also her downfall. It wasn't until her death that I learned a lot of what she told me was a lie. For example, she told me she came here from Ireland when she was 2 and she would write stories about people who were supposedly relatives who were killed in war in Ireland. I found out a few years ago she was born in Colorado. This is the kind of person that is often afflicted with MBPS.

Growing up my earliest memories (ironic word since the name she went by was Memory) are of her doing most of my basic hospital procedures like IV's, catheterizations, stitch removals, etc. No matter what hospital I was in doctors would let her do these things because she was an RN. It was all I knew so I didn't complain. I was in the hospital often as a child, but having Hydrocephalus and a shunt, that was common.

It wasn't until 4 or 5 years after her death I was watching a tv program about medical abuse. They did a story on this lady whose daughter was always in the hospital with stomach issues. They ended up removing most of her stomach, her kidney and she was on a feeding tube. Some nurse had suspected something was wrong so they put a video camera in her room and the video showed this woman looking around, then putting stuff in the girl's feeding tube. The girl was later put in foster care where she miraculously got better and the lady was charged with abuse.

The story bothered me so much that I began talking about it with my therapist that I began seeing around the time of my mother's death. I told my therapist about all the things I suspected and she agreed that she might have suffered from MBPS. All I know is my mother had a deep seeded need for attention. 
I can remember being in the hospital and before my admission would be finished she would be on the phone calling everyone telling them I was in the hospital again! Even if my particular situation at the time wasn't that serious, she would put on the water works for anyone that would listen as if I were on my death bed! She also never, EVER left my hospital room. Some might consider that an attentive parent but at a young age I began thinking it was creepy. She would literally not take a shower, not even a "cat bath" for a week or more!!
At home I can also vividly remember her coming into my room with a brown bottle (like the hydrogen peroxide bottles) and a spoon and telling me she spoke with the doctor and he told her to give me what was in it. Because I would be so sick, and because she was my mother and an RN I always complied. 

Now, I can't sit here and say that I ended up in the hospital as soon as I took that "medicine", but it all adds up!

There were also other situations like if my IV had to be changed over, she would quickly tell the IV techs "Go on, I can handle this!" as if she was giving them a break. If the techs didn't want to leave she would scream at them, and a few times reported them to their bosses. My mom was very good at that, if she didn't get what she wanted she yelled and complained to someone! Also for at least 15 years I had to be cathed due to bad kidneys. Let's just say that often turned into something uncomfortable and almost always embarrassing! I guess I should mention here I no longer have a kidney...or gall bladder, appendix or reproductive parts!

There are many, MANY people who thrive on the attention of their sick relative, but very few who actually make their loved one's illness worse just for the attention. MBPS is extremely rare. I had a child who had open heart surgery at 6 months old and I cannot imagine doing anything to make her worse just for my own benefit. The thought makes me cringe! I do remember when my daughter was in the hospital wondering if my mom felt about me the way I felt about my daughter...devastated and frightened!

After discussing this for a year or so with my therapist she asked me one vital question; "If your mother was still alive what would you do with this suspicion?". I still can't answer that. All I know is I'm very lucky to be alive for many reasons, this being one. The point is, as long as you are able to say something, you have every right to say no to something you don't want to do. I can remember starting in middle school little things here or there that my mom did that made me uncomfortable. Maybe had I said something then I wouldn't have gone through as much as I did...like to this date I've had 49 surgeries, over half of which were done from the ages of 5 to 12. I'll never know. However, now if I don't like what a doctor wants me to do I will say no or even ask for a different doctor. Fortunately I'm one of the lucky ones where my trauma has made me stronger!

I have always been open and honest about my experiences just in case there is one person out there who may have gone through the same. Yes, I have had the funny looks, even laughs when no one believes me. I just never know if there's someone listening to me somewhere who has wondered if they were crazy for questioning what they have been through. Trauma of any kind is easier to deal with if you have someone to share it with.

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

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.

getting back into writing my blog..

This is the first blog post I've posted in two months.Unlike last year after melon season I continued to work a lot still and I was really getting burned out.On top of that I was in a stressful situation that at work that I won't go into detail about for respect for the company that I work at.I was having a hard time coming up with subjects,along with everything else that was going on I was having trouble coming up with new topics.I wasn't able to post on a regular basis so I decided to take a break until things got back to normal and so I could think of some subjects.

This week I'm changing positions but staying the same department,store and company.Instead of being the main person doing cut fruit at the store (parfaits,fruit trays,slices,cored pineapples etc etc) I'm going to be closing most of the week in the Produce department and doing back up for the person whose taking my place.It's not guaranteed it will be permanent yet,but I have faith in my co worker and high hopes.Along with the change of position,comes a lot of pressure off my back so I can focus on other things.It's less hours too but it would be good to have a break so I can focus on my health so I can feel better soon.

For the time being I plan to talk about the same subjects I have in the past,but any suggestions would be great.I'm going to post every other week and hopefully on the same days or before then.I'm gonna have to build up a following,and I feel bad for losing anyone who read this blog with the help of social media.

My purpose of writing is the same,and from talking to people I know I have been successful.If you haven't seen my first couple posts and started reading I was diagnosed with Hydrocephalus at 17 months,but have gone 25 years with no revisions.I wen't 22 years with barely any problems,and 18 years without having to have a CT scan. I've had to struggle with some things that's not exactly common with people with the condition,but also things that are that isn't really well known.My blog is to help get the word out about these things and other topics that have to do with Hydrocephalus that hasn't been put online as much as it should be.Also so I can do my part in raising awareness for Hydrocephalus. I've succeeded in doing this,and hope to make a even bigger impact this year and the years to come.

In the next couple months I'll be talking about Hydrocephalus related events I've participated in during the last couple of months and others and foundations planned for the future.Also guest posts and more about subjects I've posted about before,thanks for reading.