Thursday, November 6, 2014

Taking a break from this blog, but I plan to start back up at some point.

I've had a lot of traffic on my blog since I stopped writing regularly a few months ago. It's inspired me to keep at it, but I sort of burned myself out and if I do write a actual post I don't think I'll be able to do it on a regular basis. To anyone who had found my blog through a specific post and decided to look more into it or have been following my blog, I'm not going to end it anytime soon but it will probably be a while before I start posting again. I'm going to start backlogging before I actually start posting again so hopefully time won't sneak up on me so fast. In the mean time I'm focusing on another things and get myself in a better place physically, mentally and emotionally. I know this blog has helped others and it's helped myself as well, but it's also affected me negatively in a way, making me think of the condition more than I should. I'm gonna try to start writing about others things and possibly starting a 2nd blog along with this one.

Wednesday, October 8, 2014

I'm stumped..

For the first time in almost 2 years, and only the second time in the 3 years I've been writing this blog I'm stumped. I've cut down on how many times I post several times but have only completed stop once or twice since I started. I took a writer's block break and traveled cross country of a greyhound bus and went out of town last weekend hoping that if I cleared my mind some I could get right back into routine. That is not the case and I'm pleased with some of my more popular posts and I'm glad my blog have been able to help people I know in person, those I've only met online and those that I've never had any contact with before. I want to continue to improve my writing skills and improve the topics themselves. I have some ideas in mind but a lot of them will take some time. If you would like to write a guest post for me let me know or even if you have any ideas. I'll start brain storming and attempt to make a back log so I could post every few weeks again even if it's just for a while. I also have other ideas for other blogs that I intend on working on some, some of them on the same subject but others not so much. I'll still probably post once in a while once or twice every two months maybe). If you need help (even though I'm not allowed to recommended medical advice) please message me. my information should be on my page.

Tuesday, September 9, 2014

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/







Sunday, July 27, 2014

Medical ID bracelet

I'm going to be traveling across several states next month alone and on a greyhound bus so I decided to get a medical ID bracelet. It's something I've been planning to do for years but have never gotten around to it. The most common way of buying is through americanmedical-id.com or similar sites and also websites to chain drug stores like Walgreen's. The way I bought mine saved me time I would have spent waiting to get it in the mail and I wanted to made sure I had it before I left. It's always a better way to make sure your information and size of the bracelet is correct. I got mine at a local affordable jewelery store where I had seen them before. Even if they were closed for construction the owner let me make a appointment with me. She made sure it fit and double checked to make sure that she had my correct information, then she engraved it onsite while I had lunch and a couple beers next door (I had already finished work for the day because I started at around 4 or 5am and as long as I don't be stupid I'm allowed to drink without it causing anymore damage to my shunt or messing with meds.). Below is a picture of my bracelet, a couple links and links to social media pages of the store I got my bracelet at. I couldn't get a clear shot of the bracelet but it says "Hydrocephalus" and "VP shunt" with my name on the back. Other medical conditions and medications can also fit onto the bracelet, on a card in your wallet or purse, or you can get a usb medical id bracelet where you can store information on it that can be reached anywhere where there's a computer.


http://www.americanmedical-id.com/category/medical-ID-bracelets-62?gclid=CjwKEAjwxtKeBRDMzoeQmYn5uHcSJACGCF3DfyNXyIztd_t3sCmHUMI2DE8OUXd5sr1yjpGYxYWqPBoCSQnw_wcB

http://www.medicalert.org/promo/connect-with-medicalert?utm_campaign=SEM-medid&utm_medium=cpc&utm_source=google&utm_content=connectwithmed&gclid=CjwKEAjwxtKeBRDMzoeQmYn5uHcSJACGCF3Dx8XwhtS_qo6SCEU5meIdAtzyp_wvuTV3_3CgZ9h9PhoCEhvw_wcB

http://www.walgreens.com/q/medical-id-bracelets

http://www.cvs.com/shop/Health-&-Medicine/First-Aid/Medical-ID-Bracelets/_/N-3uZ13lr5uZ2k?pt=SUBCATEGORY

https://www.facebook.com/SilverSeaJewelry

https://foursquare.com/v/silver-sea/4c1953d04ff90f47b0c80f49?ref=atw

http://www.yelp.com/biz/silver-sea-jewelry-and-gifts-tucson

Wednesday, July 9, 2014

Reflection on journey in struggling with low self esteem/ self hatred with hopes it will help someone else.

At this point I've been writing for two and a half years, and I've covered most of what I've wanted to cover a long time ago. I intend on keeping it up until I manage to completely run out of topics, or if something happens that stops me from getting internet access. This along with other recent topics is something that's been bothering me for a while. Instead of venting I want others to get something out of it, especially if it's someone who younger or just not as self-aware yet.

Through several different stages in life I've become more and more aware of what people think of me and deal with self-hatred on different levels. I've known that I'm different for as long as I can remember but it was when I started school that I learned that my differences could and would be taken advantage and used against any different forms including physical. Over time in Elementary School I realized that my good friends were few and far between. I at least thought that it was because who I am and the major differences seen in me. I now know that people with Hydrocephalus even very young tend to be really socially awkward and anxious, so that probably part of the problem as well. Except for my speech impediment what hit the hardest at the time was in Physical Education when I was always the kid that was last to be picked and had to be forced onto a team. I wouldn't have wanted "me" to be on a sports team either, and I always dreaded having to play anyway. It was just a reminder of the differences I have/had because of Hydrocephalus. I had to acknowledge my shunt when I was asked to play a contact sport but it was almost something that went farther than that and it was almost always something that bothered me.

The second major stage was when I was in the Fifth grade and without my Parent's knowledge or letting me know what was happening I was sent to a Elementary age Track meet and had to race with other special needs kids, except what I thought at the time was obvious and still think to a certain point was that I was far more functioning than all the others. I don't mean disrespect to anyone reading this but except for a couple Special Education classes each year for my learning disability specifically and later on organizational problems I was in normal classes with everyone else and even the Special Education classes including mostly of peers where there's nothing different except for a problem with learning. Of course I don't know what most of my peers thought of me but that definitely caused me to really start to be paranoid about it. Someone that I've mentioned before and did the opposite was the specialist for Adaptive Physical Education when I was in the Fifth grade and Junior High. He really showed a difference in the way he spoke to and treated me compared to another kid with more major disabilities especially when it was a one on one session. I purposely act out more and rebel in the "goodie two shoes" way that I had before because it was obvious to me that it wasn't helping me making any friends. If I would have waited just more year, I would have realized that my good friends in Junior and High school would have accepted me the way I was before. It would have probably saved me a lot of pain later on.

Thursday, June 19, 2014

Importance of therapies early on instead of later from personal experience

I meant to write this on Friday but I've been keeping busy at work so I haven't had much time to put a post together. I've also been nervous about writing this specific post so I've been putting it off but I feel it's something that really has to be said. I spent the majority of my childhood in Speech Therapy and was given the option to stop my Freshman year of High School even if I was no where near finishing the program, and I definitely wouldn't have before graduation. I was given that option because I was pulled out of class for Speech Therapy and it that itself was a bigger problem than it was in Junior High and especially Elementary School. I sort of regret of not taking Speech Therapy for the rest of High School but now that I've been backsliding again it might not have mattered later on. My speech impediment hasn't stopped me from finding jobs. I went through a few jobs before settling with Kroger and got promoted during the time I've been having Hydrocephalus related medical problems and while my speech has been backsliding.

Even though I'm not willing to go into much detail about it writing on a public site, what I regret now is the lack of Occupational Therapy when a lot of the focus was on  Speech Therapy. I had it in Preschool and then during a two year period when I was in the 5th grade and into Junior High in the form of Adaptive P.E but I wish I would have been offered more. I'm not sure how much the school district offered though, and my parents wouldn't have been able to afford if it wasn't something they would have had to pay for. I'm able to do that majority of my job without a problem but I run into problems when I have to do something that has to do with fine motor skills. I've been offered Occupational Therapy recently but working 5 or 6 days a week and almost full time it's something I don't have time for. I need to keep my availability open as much as possible too so it would be tough to schedule it on a regular basis.

The point of this post is a warning to Parents of children with Hydrocephalus or younger people with it to consider Occupational Therapy if it's not already being provided because problems fine motor skills and other similar problems will just be worse in the work force. I know that there's a lot of people with Hydrocephalus and with some it's obvious it wouldn't be possible early on. But with many people with Hydrocephalus it is possible to lead a pretty normal life. Thanks for reading, and I helped and encouraged others. If you want to know about my specific struggles with fine motor skills at work feel free to send me a E-mail or contact me on the social networking sites where I post links to my blog.

 http://kidshealth.org/parent/system/ill/occupational_therapy.html

 http://kidshealth.org/parent/system/ill/speech_therapy.html

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


Friday, May 23, 2014

Media Views On Hydrocephalus: Fastball's "The Way"

This is mu 8th post with the specific topic of "Media views on Hydrocephalus". Each one is about a well known person or a character with Hydrocephalus, or someone that most likely has it. This post is kind of different but it falls underneath the same category. Some of the posts was about people I already knew about but a few like this one was because something sparked my curiosity and looking into it I found out it's probably Hydrocephalus related.

I work for a division of Kroger and each store's music is based on the typical ages of customers. So the music that plays at the store frequently might not be played at all or very rarely at other stores. I worked in the backroom for almost 2 years because my primary and usually only job was doing prep work. Ever since I started working on the sales floor again during the last year and a half I've been paying a lot more attention to the music my store plays. It's seems like they've changed the music they play but it may also be that I can focus on the music that I don't work in the front end of the store anymore. The music that catches my attention the most is from the late 90's when I was in Junior high. Most of the bands and songs I recognized right away but there's a few that I had to look up either with the Soundhound app on my phone or looking up whatever lyrics I could remember on Google. One of those bands is Fastball, and this band specifically I never would have remembered them if my job didn't play their music. They had one song that reached the top of the mainstream rock chart in 1998 which is the one this post is specifically about. "The Way" and another song from the same album "Out Of My Head" reached the billboard top 40. Two others charted as well but not in the top 40 and probably aren't recognized as well. Those two songs are "Fire Escape" and "You're An Ocean". The first 3 songs were all released around the same time from their album "All The Pain Money Can Buy". The 4th "You're An Ocean" was released a couple years later in 2000 off their album "The Harsh Light Of The Day". Their 2000 album was the last to be released on a major record label and didn't do very well compared to their success of "All The Pain Money Can Buy".

I've brought up this band and a couple others recently and while most don't remember them at all, I was reminded that there is a back story to their more successful song "The Way". I looked more into it and the song is about a elderly couple Lela and Raymond Howard. They left their home in Salado, Texas in June of 1997 heading to the Pioneer Festival close by in Temple, Texas. Lela had Alzheimer's and Raymond had brain surgery recently and was started to show problems from that including memory problems and becoming disoriented. They were found 2 weeks later dead in a ravine near Hot Springs, Arkansas. The bassist for Fastball, Tony Scalzo read articles about the couple and came up with the song. He already finished by the time he learned that the couple had passed away. Scalzo said that "It's a romanticized take on what happened" and that he "pictured them taking off to have fun, like they did when they first met."

What sparked my interest in the story was the mention of brain surgery. When I looked into it I kept on finding the same article about the song and the story of the couple just posted on different sites. I decided to try to look even deeper and found out that the surgery was to relieve swelling his skull after the car accident. The first thing that came to mind was Hydrocephalus but since I can't find any more information on it I still can't be sure.

Thanks for reading, I've mentioned this before but I plan on writing more about this specific topic again soon. The problem is that most of the ideas that have to do with this subject are ones that involve a lot more research.


 


http://www.songfacts.com/detail.php?id=3701

http://articles.chicagotribune.com/1997-07-14/news/9707140050_1_found-festival-dense-brush

http://www.texnews.com/texas97/coup071497.html

Friday, May 2, 2014

Message to Bruno Mars

I'm going to do something a little different for this post. I got a message on Facebook from someone asking me to help her to try to contact Bruno Mars so her brother can meet him. I'm using my blog for this instead of the domain name I share with a friend because of plans to switch over to a different domain host in the future. Below is the message I received word for word. People can either contact me with the e-mail address provided on my blog or to Erica at monie62713@gmail.com

To whom it may concern, My name is erica ramirez I am trying to contact anyone who is willing to help my brother nicholas he is 14 years old who is currently going through the process of getting dialysis due to renal failure since the day he was born he was faced with many challenges being diganosed with hydrocephalus (flatting of the head) at 4 mo had a shunt placed and many reconstructive surgeries to round out his head. At the age of 5 he had a stroke and was diagnosed with moyamoya this disease is a rare progressive cerebrovascular disorder caused by blocked arteries at the base of the brain can be described as a “puff smoke” because the look of tangle of tiny vessels formed to compensate for the blockage. at this point he has one kidney that is shutting down which brings me to my point his only wish through this all is to meet bruno mars and I'm not sure how to go about making this possible but my family and I are trying everything possible to help his wish come true even a simple phone call would be great if there is any resources that you can provide to help would be greatly appreciated!

Friday, April 11, 2014

Guest blog (Berkley's life story)



Hi, my name is Berkley, I'm 18 years old, and I'm from Ontario, Canada. So, I was born with hydrocephalus, which is caused by an accumulation of fluid in the ventricles of the brain. I have a shunt that drains this excess fluid from the ventricles to my abdomen where it can be absorbed properly. I have had 21 brain surgeries, and 27 all together because of it. 15 of those surgeries have been in the last 3 and a half years. Before I was even one year old, I had 9 shunt malfunctions until a second shunt was placed. I was fine from my first birthday to around my 15th birthday. I had shunt tube lengthening when I was 9 and ended up having emergency surgery because I was playing soccer at school and was pushed into the ground. This caused my stomach incision to come open. In October of 2010, because I had been feeling nauseous in the morning since about July of that year, I went into the clinic to have a shunt series, and a CT scan done. In November, I went back to review the results with my neurosurgeon. She then informed me that the shunt tubing was disconnected at my neck, so I had surgery the next week to reattach it. My shunt tubing was worn on both sides (I had 2 shunts at the time) so my neurosurgeon decided to take out the tubing on both sides and replace it with new tubing. 

In the months following, I developed symptoms of chest pain when I was breathing deeply, a constant headache, abdominal pain, and shunt pain. In March of 2011, I went into emerg with pain in my side. They suspected appendicitis so they took my appendix out. On April fools day of 2011, a constant headache started. A few weeks later it hadn't let up so my mom took me into emerg again and they admitted me to do some tests. They did a shuntogram (basically a spinal tap in the shunt rather than the spinal column) and a couple of days later, they put an ICP (intracranial pressure) monitor in my brain so they could monitor the pressure in my head. Right when I came out of the operating room, my neurosurgeon found out that I had a shunt infection. She finished the monitoring and then gave me the options I had for treatment, and I opted for the surgery over 2 months of IV antibiotics. I was absolutely terrified because this was a surgery I had never had done before, and I didn't know what to expect because they'd have to drain the fluid outside of me into collection bags. I was expecting something completely different from what it was actually like. 
They put the drains in, and gave me heavy doses of IV penicillin over 13 days. When it came time to put my shunts back in once the infection cleared, my neurosurgeon decided that she was only going to put one shunt back, remember, I had issues when I was a baby until they put the second shunt in, then I was fine until all of this. A few days after they put the shunt back in they discovered that the tubing was balled up in the wrong place in my stomach so they had to go back in and fix it. I was discharged the next day.

 Over the next few months I had developed more symptoms; dizziness when standing, nausea, the headache and a bunch of other things I had with the infection were still there. I had been admitted over the summer a few times for observation, and a different neurosurgeon finally decided to try a VP programmable shunt. They didn't believe it would make a difference, but they still put it in, and did another ICP monitoring at the same time. This all happened to be on my 16th birthday. In the months following that, I still had the dizziness, constant headache, now shunt pain, and trouble sleeping with the new shunt. I went to see a different neurosurgeon in November of 2011 who did nothing for me, and said that my headache would go away once my body got used to the new programmable shunt I had placed. I had been on multiple different medications to help with the headache and nothing touched it, and still doesn't. 
In January of 2012 they did another ICP monitoring because I developed papilledema (swelling of the nerve in the back of the eye). It is also a sign of increased pressure in the brain. The numbers were fine (typical for me) so they still have no idea what is wrong or what they can do to fix me.  
Since the pressure monitoring, I had still been dealing with these medical issues. I was sent to a new neurosurgeon in December of 2012, who, in the beginning, was unsure of what to do for me. He originally thought of once again doing an ICP monitoring due to the fact that he's at a different hospital from my original surgeon, and wanted to see readings on his own equipment. After this appointment, we did not hear from him for more than 6 months. When we finally did in July of 2013, it was because of the fact that the headache had become even worse. I was admitted the same day, and had an MRI the next morning. My neurosurgeon, upon reviewing the results and comparing them to past CT's and MRI's, realized that my ventricles were slightly larger than at times when I was well. Although there was very little change, he decided to go with this idea, and opted to do exploratory shunt surgery. Through doing this surgery, he discovered that my shunt was blocked, and had likely been since shortly after it was placed in August of 2011. He replaced the component of the shunt that was blocked, and I was sent home a couple of days later.
After this surgery, once I had healed a little bit and the pain from the surgery was gone (about a week later), I realized that my headache was no longer there, I was so happy! Life felt like it was beginning to go back to the way everything was before all of this started. On August 4th (A day after my 18th birthday), the headache returned. I went back to the hospital the next day, and had another MRI done. This came back with very clear results, showing that my ventricle that did not have a shunt placed in it anymore, had blown up to be almost 2 cm in diameter. This made diagnosis very easy, and led to another surgeon who was working while my original surgeon was on vacation, to decide on placing a second shunt back into this ventricle. It was successful, and my ventricle went down in size right away. After the surgery, my headache was still there. My neurosurgeon was once again unsure of what to do for me, as I had my second shunt back, and my ventricles had shown to still be very small (slit-like at the time) based on MRI's I was having done monthly since the second surgery that summer.
The incision from the surgery in July had never healed properly, so on January 21st of this year, I went in to have an incision revision done to reclose it. After this was done, I was sent home on antibiotics. When I was in the OR, a shunt tap was done. A couple of days later, we got a call from my neurosurgeon who told us that my shunts were infected, along with the area around where the incision that never healed was. They asked us to come back that same day to re-do the shunt tap to make sure it wasn’t just a contaminant that interfered with the culture results. The next day, we received another call from my neurosurgeon because the results had already come back with a fast-growing bacterium. I was told to come back to the hospital the next day (January 31st) for emergency surgery to have external drains placed. I had a PICC line placed on February 3rd, and was put on vancomycin and meropenem to treat all of the 3 infections that I had (2 in the shunts, and 1 in the incision). The meropenem was stopped a couple weeks later because they didn’t think that it was helping with anything, but I was kept on vancomycin for 6 weeks.
On February 12th, I had the ETV (Endoscopic Third Ventriculostomy) procedure done in hopes of not requiring a shunt once the infections had cleared up. It basically involves burrowing a hole into the floor of the third ventricle to allow fluid to flow through it, and this theoretically allows for the CSF (cerebrospinal fluid; the fluid that protects the brain and spinal cord) to absorb within the brain like it would in a normal person. After this surgery, I ended up with aseptic meningitis (blood in the CSF), which is extremely painful. I was on steroids for a couple of days, and was left to let the blood clear from the CSF on its own, which was not a pleasant process. Over the next couple of weeks, my drains were clamped and unclamped a few times to see if my body could handle absorbing CSF the way a normal, non-shunted persons body does. Even when the drain was open, I leaked CSF from the drain insertion site. I had to have extra stitches put in, and this didn’t seem to fix the problem. We were told that when this happens, the only real solution is to have a shunt put back in. So, on February 27th, when Infectious Disease had finally cleared me, I was booked in to have a new shunt placed. This time, it was going to be just a regular fixed pressure VP valve (this is what I had up until my 16th birthday), rather than a programmable. After the shunt was placed, I was unable to sit or stand without getting sick, and had severe neck and shoulder pain. They figure that it was caused by there being a lot of swelling and blood along the shunt tract due to a reaction from where the shunt was placed, as I had never had a shunt in this ventricle before. The only relief I had from this pain came when I was lying completely flat. I was sent home on March 1st on PICC line antibiotics. A week later I returned to the hospital still in as much pain as I was before I was discharged. They did an MRI, shunt series (x-ray along the path of the shunt tubing), abdominal ultrasound, and shunt tap. These all came back to be normal, so I was sent home after consulting with the pain team who told us to try a muscle relaxant, which didn’t help with the pain at all. I had to lay flat as much as possible for just under 3 weeks before the pain finally subsided enough for me to function.
I have now been transferred to an adult neurosurgeon here in my city, and am waiting to see him still. I'm hoping that with this new surgeon, something will finally be figured out, and that my headache will go away.

 My Life With Hydrocephalus: Berkley

Friday, March 21, 2014

Outcomes of Hydrocephalus




I'm not writing this claiming to be in the medical profession at all, and any research I do is not scientific in any way. I'm writing this from the view point of someone who personally has Hydrocephalus and have spoken to many others with the same condition via social networking or in a few occasions in person. Any research I do is done by browsing through articles online, and is usually for this blog.

The outcome for people with Hydrocephalus varies from not being independent at all to living normal enough lives. The outcome for people with Congenital Hydrocephalus growing old is still pretty much unknown territory because the current treatment has only been around 1950's and 60's. So the oldest survivors are only in their 40's and 50's. It was very unknown for people with Hydrocephalus around that time what their futures would be like because they were the first generation. The problem is and the reason I'm writing this post is that at least with some infants and children being diagnosed with Hydrocephalus is that they are still being given little hope for a good long term outcome.

It's really hard or impossible to know the outcome right away or in childhood, and again there are some that will never be independent, almost at all in some cases. However there are many people with Hydrocephalus who have been able to accomplish things like having a family of their own, working a good enough job to support themselves financially, and going to school. There are people I've met on here that has not only accomplished higher education but have double majors or have gotten their master's degree. Learning disabilities but a lot of the time it can be overcome. It depends on where people are at cognitively, but it also depends on surgeries and how they end up affecting the person. There's some of us that deal with pain on a regular basis, and that can or cannot stop us from having a certain long term outcome.

Personally I struggled in school to the point where except for getting a office certificate which took me several months at a Community college when I was waiting to get my high school diploma, I decided to not go to College or at least not right away. Things came up including shunt problems and I haven't had the chance to go back but I still hope to eventually. What I have been able to do is keep a job for several years so far, and work up to a position where even if it's not part time I'm making a liveable wage doing it. I'm a Produce clerk for a Kroger division and I have been for 3 years. There's a lot of heavy lifting which I most likely won't be able to do at some point, but if the time comes that I'll need to switch positions to a less physically demanding one I'll be able to do that.

Thanks for reading, I hope that I accomplished my goal and encourage someone by this post. Below are some links that will hopefully help people further. If you want know more about my personal experiences there are labels that will bring you to other posts I've written about the subject. You can use the labels on this post to bring you to posts about the same subject.

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

http://www.hydroassoc.org/

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

http://projectbraindrain.org/

You can contact me easily via the social networking pages for a domain name I share with a friend "gotshunt.com".

https://www.facebook.com/gotshunt?ref=hl

https://twitter.com/gotshunt

http://gotshunt.tumblr.com/


Friday, February 28, 2014

What I wish I would have known about Hydrocephalus as a kid (part 2)




This is the second part of a post that I wrote several months ago, and intended to finish a lot sooner or not at all. Part of the reason why I'm writing a second part to it now is so that I could refer to it later on instead of writing a post that will end up being several pages long. The link below is the first part.

http://timothy-landry.blogspot.com/2013/07/what-i-wish-i-would-have-known-about.html

If you're someone I've known for more than 5 years you its most likely to never have known that I have Hydrocephalus. It was someone that my teachers knew about but wasn't spoken about unless it was somehow brought up or on a need to know basis. Especially at church, I'm not sure who was told about and who wasn't. I assume that more of my caregivers were told about it when I was younger and my speech was still pretty limited. I only started to tell people about it when my actual started to become a problem in 2009. I started talking to other people with Hydrocephalus on Facebook at the same time, and everyday challenges with Hydrocephalus were brought up early on and it sparked a interest. It wasn't until then that it's normal for people with Hydrocephalus to have the same problems learning as me.

My source is the Hydrocephalus Association's teacher's guide's third section which explains a lot of the problems I had in school and church, most of them I didn't think of having to do with Hydrocephalus. The first couple of things that I could really relate to in the guide have to do specifically with Nonverbal learning disability. It mentions that problems seem to become more noticeable around junior high and children (and of course adults) with Hydrocephalus or just nonverbal learning disability tend to have problems with math. I did start to really struggle during the last couple years of elementary more than before, and it got worse during the transition from Elementary to junior high. With math I had a few setbacks but I did pretty well until high school Algebra. I ended up graduating high school without ever actually passing Algebra or Geometry. They would have me take a lower math class and I would do great, but when I would try Algebra I bomb and fail the class every time.

Something else that's mentioned in the guide is Fine motor skills, which I'm sure which a problem was because how big of a problem it was outside of school but it's something that was easier to deal with in school than anything else. It's something that's mistaken less for a lack of effort, and it's something that I always knew had to do with Hydrocephalus. I remember it being a bigger problem at church specifically for the mid-week Boy Scout type programs for elementary school aged kids. During the first couple years it just meant that I had to ask someone to help me cut paper for projects, but later on when the projects were more about learning to tie different knots and building birdhouses I knew that I wouldn't be able to handle it. I was getting really frustrated a few weeks in and the amount of issues I had with fine motor skills was beyond just asking for help once in a while. The one specific experience having to do with fine motor skills that I have to do with school is when they had all the students tie a ribbon to a fence to make some sort of design or to spell something. I got anxious knowing that I wasn't able to and ended up having to admit that I couldn't do when I was questioned about it by a staff member and watch her tie it for me in front of my peers. It also mentions handwriting which I got a lot of help with from a teacher in elementary but it's something I still have some problems with especially if the paper I'm using doesn't have lines. It's eligible though and usually when I have to write a lot it's done on a computer.

The first thing that comes to mind in the visual motor skills section is finding my place in a book which was a problem then and still ends up being a problem once in a while in the workplace. It's also probably what caused me to not be able to space things out very well when I had to draw.

The next part of the section is organizational skills which automatically think of struggling to make and break habits, which would result and still does end up resulting in things not being done either because I would constantly forget to do something day after day or because of letting things, specifically assignments in school get organized. The few times I tried to use a organizer to write down my assignments it would last a few days but as soon as it was something that wasn't strictly in forced I would begin to forget about it which pretty much killed the purpose of having it in the first place. I would also consistently not use folders and toss stuff into my backpack which would result in a black whole effect and by the time I would find it again it would be crumpled up or not even in one piece. I think this is one of the major things that would have helped a lot if it was known about. It was the major reason why I was kept in special education classes. I don't know if it could have been handled differently, but if it could have it sure would have helped. The section also mentions not being able to follow a set of instructions which definitely was and still is a problem, especially if it was verbal instructions as a group. I would get stuck on something and get a few steps behind and not be able to complete the assignment.

Memory was something that was clearly a problem very early on at church when each of the kids would be asked to memorize a verse and they would erase one word at a time. I would always be the last to remember and be able to recite it. It was frustrating especially in front of everyone else but it meant a lot to me that the group leader wouldn't give up until I got it or get noticeable frustrated with me. It became a problem in junior high when I couldn't answer questions or recite something right after I read something in a text book or essay. It continued to be a problem in all through school but it was so frustrating my first year that I didn't put much effort into it and get by with really low grades and ending up not finishing high school on time. It's something that's even more frustrating in church small groups which have made me try to avoid anything where small groups are part of it.

The last section I'm going to mention is attention problems. There are a few sections that I've skipped but this is a long enough post without them, so I just picked the ones I could personally relate the most to. If you're interested I encourage you to check out the guide or even just that specific section. Struggling with attention ended up resulting almost has to go on Ritalin and being misdiagnosed with attention deficit disorder. This and memory effected my school performance too more than other things, and if it was possible it would have really helped getting more help in these two areas.

Thanks for reading, I hope that I've hope you understand me, yourself or whoever you may know that has Hydrocephalus or nonverbal learning disability. I hope that I've helped someone get something out of this, and make things easier for you. I'm going to write more about this subject in the next couple of months and my next post will be the one that is going to refer to this one. Below is a few links to Hydrocephalus foundations and the teacher guide I've been referring to and also a sample of my handwriting that I sent to a friend.


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

http://www.hydroassoc.org/

Pediatric Hydrocephalus Foundation--> http://www.hydrocephaluskids.org/wordpress/

This is a sample of my handwriting that I sent to a friend. I decided to make my handwriting more creative to entertain a couple of teachers in the process of doing my work. It worked and it's something that stuck, but ended up getting more sloppy over the years. Notice how the spacing is off? The size of the letters is kind of too but that's the main thing a teacher in Elementary school helped me with.