Wednesday, April 25, 2012

limitations including career paths

Sorry I haven't been writing on a certain during lately,but I have been making it a point to write during the start of the week or at least before Thursday.Also I had a problem coming up for the my topic this week.Lately I've been thinking about career paths or other activities that I wouldn't be able to do simply because I have a neurological condition and more than I have a medical device in me.I don't know if this post will help others as much as like others posts during the last few months though.But it's been brought up on hydrocephalus groups on Facebook somewhat and it's something that I've personally thought about once in a while.

I don't know if I've mentioned it on here or not,but growing up I knew very little about hydrocephalus.Actually the only thing I knew about it except for my shunt and knowing that I'll probably need to have it replaced at some point was my limitations.I knew that I couldn't play contact sports,and I knew that I wouldn't be able to join the military.By knowing my limitations I'm talking about everything that I had to work harder on and fall behind me on when it seemed to be so easy for everyone else.The everyday limitations didn't always make me think of my condition though.But when I had to turn down every playground game that what a contact sport it did make me think of it,and it was lonely having to sit out on games.Thankfully my elementary school P.E teacher only planned things that I could be a part of,and the few times that I couldn't she made it a option for the whole class so I wouldn't feel left out.I didn't think about it much until I started to hear other people's experiences with P.E,but I'm grateful for what she did for me.

I knew that I couldn't join the military for as long as I can remember,and it didn't really bother me until high school.Either though I still think about not having career paths that I knew I'll never be able to do with physical contact,and one that I never thought about that I'll never be able to do which isn't usually something that's realistic anyway is being a astronaut.Not only would there would be a danger when it comes to the physical training,but being in space would most likely mess up my shunt.Not only would the pressure be a problem,but my shunt relies on gravity,and there's none in space.None of these options would really be realistic options except for the military,with or without my shunt so it doesn't bother me.

What does bother me is the career paths I can have now that I may not be able to do in the future.I'm not saying that it will happen,but with the condition I have there's always that chance that my condition will become more severe and there might be things I can do that I won't be able in the future.I'm not going to talk much about the career options that I won't be able to do because it's something I haven't put much thought into and most of it hopefully is things I won't need to consider doing for a living.However hopefully I do write about it can be used as a example or other career paths too.I currently work in the produce department for a division of Kroger.You might not think about it when you think about a produce department in a grocery store,but my job involves a lot of heavy lifting.Most of the boxes fruit come in tends to be heavy and it's not uncommon for apple boxes,melon boxes etc etc to be about 50 pounds.When/if I need a revision it's going to mean that I won't be able to work in Produce,or at least not the normal way because it would be months before I could do heavy lifting,if ever.So at some point Produce might be a option,and though I'll miss it there are other career paths in the grocery business.What would be a problem if there's ever a day where I lose my job in the grocery business and have to go back to working in restaurants like before.In that industry there is little that wouldn't have to do with heavy lifting,cashier/host only.

There are also jobs where we/I could do that wouldn't  be a rise choice because hospital stays and recovery wouldn't be a option.Personally that job for me is retail management.It wouldn't be a risk to my shunt,and if I tried hard enough I can do it.But it's a problem when someone in that position calls in sick at all,let alone suddenly be on leave.These our usually jobs that we can't do because of safety reasons,and these are jobs that we could be offered.But it wouldn't exactly be always wise to have them.This is just my opinion,and I know there may be people who don't agree with me.

I know at least some people see the limitations of career choices as discrimination to us,but it's really not.It's for our safety,and I'm neurosurgeons would agree with the military,professional sport leagues,and NASA to not hire us for these jobs.It's discrimination when it's a job that we could do physical that they would't hire us for just because we have a disability,and some of those jobs just aren't worth fighting for.Thanks for reading :)

Monday, April 16, 2012

my teenage years dealing with a neuro disorder

I'm working really early this week so I'm not going to be able to be online so I won't have time to blog this week,so I might as well get it over with now.This week I want to talk about my challenges with being a teenager with hydrocephalus,most or even all of what I'm going to talk about I had no idea at the time that it has anything to do with having a neurological disorder.Also if your pretty new to reading my blog I want to give a reminder that I've never had any revisions yet,and my shunt is "24+years and draining.." so this post has nothing to do with surgeries.

I tend to be a pack rat and I managed to never throw away a bunch of papers from my last semester of high school until just a couple months ago.While looking through them one last time before getting rid of them I was reminded about what I struggled the most with because of papers from counseling or in class.For example I've always struggled with being able to focus,and the result in class would be unfinished notes.I would start but by the end I would usually lose focus and never get them done.

When going through my counseling notes I noticed that everything that I wrote down that caused me the most stress had to do with hydrocephalus in one way or another.I always had a hard time opening up my locker,partially because of my hands and also I couldn't remember my combination.It wouldn't take long before I just gave up for the whole school and started to carry it all in my backpack.Either way of dealing it would have sucked,but trying to mess with my locker would have just made me late to my classes even more.Another thing that I wrote down that caused me the most stress,was dealing with my emotions.It's something else that I've always struggled with,and it was the first thing I learned about when I started to meet others with the same condition online.Apparently it's a direct effect of "brain problems" and it's something that is likely to only get worse when shunt failure happens.

High school was the biggest point of my life when I realized what people thought of me,but I didn't understand that that's what was causing me to be so angry at the time.Dealing with that,puberty and other problems and not knowing what was going on at all resulted with a lot of anger and I didn't know how to control it or where to put it,so I ended up letting me get really down and let it out on myself.I was also very bitter toward the doctors who had told my parents for a year and a half and that there was "nothing wrong with me".From what I knew I had just figured that my speech impediment and lack of muscle control had to do with the late diagnosis,and I figured that if they would have just diagnosed me on time that none of those problems would exist.I've found out sense that it has nothing to do with it directly,although it might have still something to do with it.I'll never know for sure what caused it,but I'll rather not know.Thanks for reading :)

Thursday, April 5, 2012

history of hydrocephalus treatment and a hope for the future

I've tried to make it a point to write at least once a week,so I apologize for not writing in during the last couple weeks.

Although there really hasn't been much improvement in treatment in the last sixty years for hydrocephalus there has been some.Other than in the eighties there has been some development in shunts since when they first came out with them.The main reason that it took until then is because they couldn't determine what was causing it exactly because they didn't have the technology  to find out.Then they didn't have the technology to find out someone has hydrocephalus before they were born until decades later.The first treatment they tried for hydrocephalus was ventricular punctures,and it didn't work because he thought that it had to do with the outside of the brain rather than inside it.In ancient greece they attempted to treat hydrocephalus by wrapping bark around the person's head and in trephined holes.Several other treatments were tried to during the last couple centuries before shunt technology.Many were not successful due to lack of knowledge on what hydrocephalus,but some were close to knowing what the cause and wasn't successful for other reasons.One interesting treatment had to do with leeches,because a 19th century doctor thought that hydrocephalus was a inflammatory disease/condition.

The main two people who invented the first and still current shunt valve were actually not doctors.One was a toolmaker and the other is a famous children's author.They both were fathers of a son who developed hydrocephalus in childhood,and they both had the determination and the knowledge to make something that would not only save their sons lives.The inventor of the shunt valve is John Holter.His son Charles was born with severe spina bifida and after meningitis he developed hydrocephalus.This was 1950 and at the time the hospital they went to had developed a shunt but they didn't have a valve for it.After a failed attempt which resulted in the death of a young boy,he made the first shunt.Although it didn't save his son the shunt is still in use today.His model is the "Spitz-Holter" shunt.

With the first development in shunt technology was partially made by a engineer and a neurosurgeon the person who decided to make it and also had a huge part in developing the shunt itself was Roald Dahl.If you don't know who he is,he's a children author who wrote books who would later be turned into popular movies like Charlie and the chocolate factory.Although shunt problems are common and the need for revisions is far more likely than they should be,it use to be alot worse.After Dahl's son's carriage was hit by a taxi he developed hydrocephalus.Back before he created his valve shunts would jam more often and be more likely to cause brain damage and blindness than it does now.He ended up inventing the valve system that's still in use and at least at the time metal discs were invloved.His valve is no longer in use and his son didn't need a shunt anymore by the time he finished it,but it did save or at least made life easier for several thousand children.Kind of off subject but Roal Dahl was one of my favorite authors as a kid,and still is.I think it's pretty cool that he has a part in why I was alive and well at that point in the first place.

There was developments for shunt technology in the decades to follow nothing really worth mentioning.In 1997/1998 the programmable shunt was developed and released.The purpose of it is so that not every problem doesn't have to involve surgery and a new shunt.Instead the person's neurosurgeon can change the setting.The prolem is that even though that it makes that part of a person's life the programmable is likely to cause other problems,and just isn't worth it.Personally because of not having any revisions yet and having a shunt about about a decade older than the first programmables I can't talk about it from personal experience.

The newest known developed is endoscopic third ventriculostomy.It involves making a small hole in the third ventricle of the brain so having a shunt isn't needed.Although it was used pre-shunt for several decades and it was successful and replaced by shunts.It's more effective now but it still fails,and only a small amount of people are able to have it done.I already know without needing to ask a neurosurgeon that I'm not one of them.

There has been small improvements in recent years but nothing that's really well known or at least known to be effective.There is hope though,before 30 years there was no foundations for hydrocephalus so other than what was funded by the government which has never been much.Now more than ever with foundations,and social media with have more of a chance to raise money or just awareness.There working on new developments rather or not we hear about it alot.The way we're going there's hope for a cure,thanks for reading :)