Cerebral palsy what is it you ask!

March is cerebral palsy awareness month so I thought I would write about it as I understand stand it! Yes I know it’s not March just yet on the day I’m posting this but March may become hectic so I wanted to write while I had the time!

Please remember I’m not a health care professional so I did the best I could at explaining everything!

Well cerebral palsy is brain damage either before,during or after birth The brain damage it self is caused by a lack of oxygen to the brain! Cerebral palsy is an umbrella term for a long list of movement disorders! The most common type of cerebral palsy is is spastic cerebral palsy! There are for main types of spastic cerebral palsy quadriplegic which effects all four limbs and some speech as well! The next type of spastic cerebral palsy is triplegia which typically 1 arm and both legs this the least common type of spastic cerebral palsy! The next type of spastic cerebral palsy is diplegic which mainly effects the legs! The last type of spastic cerebral palsy is hemiplegic which effects one arm and one leg on the same side of the body usually.There are many more types of cerebral palsy but it would take my hours to research and write them all down that why I did the four main types of spastic cerebral palsy and because spastic cerebral palsy is the most common type! Now you’re probably thinking what is spastic cerebral palsy the main characteristic of spastic cerebral palsy is spasticity (high muscle tone!) Spasticity makes it hard to control the movement of your body so everyday tasks are ten times harder because you have to not only focus on what you are doing but you also have to focus on making sure the limb is are using is doing what you need it to do to complete the task! No one really knows what caused spasticity in cerebral palsy it is thought that the brain sends out to many signals to contract the muscles and not enough signals to relax the muscles! I like to compare cerebral palsy to a snow flake because it effects everyone differently you can see two different people with the same kind of cerebral palsy but it will effect both individuals different for example they might both have spastic diplegic but one can use a walker for mobility but the other person uses a wheelchair for mobility! Cerebral palsy doesn’t mean people don’t know things so please don’t treat people with cerebral palsy like a two year old cerebral palsy effects our movements not our intelligence! Another thing is don’t just assume we can’t do something and do it for us please ask or if you see someone struggling with something let them ask for help don’t just do it for them! I’ll give you a tip the way someone with cerebral palsy does something may look odd but we learn to adapt because of our physical limitations and we get it done in a way that works for us! There are many other medical conditions that can go along with cerebral palsy and many treatments options but I’m not a health care professional and I don’t want to to give people wrong information so if you have medical questions please take to your doctor or other health care professional! If you have any ideas for what you would you want me to right about next or any questions of how cerebral palsy affects me personally please let me know!

The things I don’t tell people!

I always try and stay positive and say I don’t mind having Cerebral palsy but you know what sometimes I really Hate having CP! I don’t like to have to explain to everyone that I’m normal but different you ways you can see and post importantly ways you CANNOT see! Please always think I don’t like to have to sit a chair truth is I don’t mind my wheelchair I actually love my wheelchair the stuff I don’t like not being able to go out with friends! Having to doubt if people who say they like me but really just say that because they feel bad for me or they are my friend because it’s makes them look good! I hate having to make plans months in advance to hug out with my two best friends when I know that they have friends who call them up and ask them if they want to go out and they say yes see you a couple hours! I hate having to worry about weather there friends know about me or I’m I the well kept secret friend who they don’t talk about so they don’t get teased or judged because their friends with the girl in a wheelchair! I hate having to only go out for a few hours because they have to study but in reality they just want to go hung out with their friends they aren’t any work! I hate to have to take other people with my friends to mall because I can’t help get myself in and in and out of a suv or a truck! I hate that my moms has to drop me off to hung out when I need my power wheelchair for independence and because it’s more comfortable! You want to know what I really want I want to go out and party with my friends just like every other 22 amount 23 girls does I want to have a true sleepover at someone’s else’s house not a family member house! I don’t always want to be told that I’m fine just the way I am because in reality sometimes I really dislike the person I am! Please don’t tell me I’m like everyone my age (normal) because I’m NOT! I hate having to wonder everyone night before I go to sleep if I’ll still have friends in the morning! I hate that people tell me stories when I text them for example I’m studying or hunging will my family when they are really hunging out with friends and don’t want me to bother them! I mainly wrote this post for people (friends to know how I really feel about things) This post may have surprise you but please know I’m not oblivious and trying to fool me with different things don’t work at it’s my heart so very bad!

Do not leave judgmental or mad comments because I will delete them and report them!

selective dorsal rhizotomy

I'm putting this disclaimer at the beginning my other surgery that I talked about in this post also is part of the reason for my loss of functional ability! This blog has my story and opinion if you don't like it then don't read it! My parents did what they thought was for me and they never left a store unturned! Being in a wheelchair is the card I was dealt and I'm perfectly happy with it! I will NOT TAKE MEAN COMMENTS OR JUDGMENT my family and I do the best we can 

1. Selective dorsal rhizotomy surgery isn't all it cracked up to be! I had a selective dorsal rhizotomy at age 5 or 6 when I had to have the surgery done before age 7 because it was thought back then at 7 certain brain patterns set in so the surgery wouldn't be as effective after age 7. While initial a great success it has now caused me more problems! I had the surgery in I believe June of 2002 I spent a month or more in the hospital doing intensive physical therapy to get myself back to where I was before surgery because they cut my sensory spinal nerves I lost all my  spasticity which is the point of the surgery because if you don't have the spasticity it's easier to control your movements and have more control over your body (your not fighting your own body as much essential) but it also means I lost all my strength because I was using spasticity instead of my actual muscles! After the months of PT and hard work! I was still walking with a crouch. gait so my orthopedic doctor remembered that I should have my hamstrings and heal cords released so I could stand up straighter which was supposed to make walking easier it did at first! Then around 4th grade is when things started to go down hill around the middle of the school year I started having terrible knee pain! At the beginning of 4th grade I was using what I believe is a reverse walk because of the knee pain I was no longer able to support myself while walking so I started to use a rifton pacer gait trainer with arm chest and thigh supports that gave me more support which in turn gave me less knee pain! Then in the beginning  5th grade I began having more pain so I was becoming weaker so I ended up having to use the Rifton gait trainer with every support it came with! Using the gait trainer lasted from 5th grade though 10th grade! At the age of 15 I started out patient PT on top of school based PT (there is difference between those two PT I'm  not exactly sure what so if you want to know more about it you'll have to do your own research) My outside PT was able to get me walk with just a regular walker again but honestly that a whole other post because it's been an roller coaster of ups and downs that I'm still dealing with today! I gave everyone a ton of back story but it's to explain this next part! The reason why I said SDR surgery isn't all it's cracked up to be is because it a me to have a pretty big spinal deformations which can not be surgical fixed because it would involve moving my spinal cord I have the opposite of scoliosis which is called  lordosis basically my curves inward instead of sideways! Having lordosis has made it extremely hard to just sit in a regular wheelchair or anything other then my power wheelchair or a recliner! The other reason is it is supposed to be a permanent solution for spasticity but in my case that isn't the case and I'm currently in the process of getting a baclofen pump which my family wanted to try to avoid that's why I had to SDR surgery 17 years later and I have to get a baclofen pump anyway! Ps. Thought this entire journey I've the most amazing support for family, friends and of coarse my fantastic PT's and OT's! Thanks to everyone who takes the time to read this post! I will do some follow up post as my journey continues!
   

My Artwork examples all done by me!!!!

The process of getting a new power wheelchair part 1 (The trial of different wheelchairs)

Hello everyone,

I'm starting a series of blog posts that will walk everyone though the step by step  process of getting my new power wheelchair.

                     In this post I'm going to tell everyone all about my wheelchair trial on Friday the August 21st 2015!! My wheelchair trail was at 10:00 am I got there at 9:15am you could say I was a little excited!!! The 1st step was my OT supervisor ask a bunch of questions about my current chair and why I didn't like it . Step #2 was she took a bunch on measurements so the chair will fit me just right unlike my current chair that fit me very poorly. Another thing they do during step #2 is she took a very close look at my body to see if i have any deformities that might need custom things on my new chair. I did have so issues that needed to be addressed I have a spinal deformity and some leg a and foot deformities.The next step is the fun part trying out the different wheelchairs. The 1st chair I tried is called the Quickie QM 710 while I liked that chair a little I would have had to get custom seating witch we wanted to try to avoid if at all possible. The next chair i tried is called the Permobil F3 I really liked this chair because it fit me like a glove while their and some thing that need to 

be put on this chair to make it perfect they are relatively simple compared to getting custom seating. The biggest reason why I liked this chair is because my back touched with any added peaces. After testing both chair I came to that conclusion that the Permobil F3 was the right chair for me!!!
In my next post i will talk about the ordering and insurance approval process!!

I'm sitting in the Permobil F3!! 

Not letting my wheelchair stop me from living a regular life

Back in 2012 I met a wonderful lady she was covering one of my classes and we became friends over a TV show! Later in the school year I started to see her on a more regular basis and found out that she was the coach of the varsity girls lacrosse team! A couple weeks later I met one of the girls on the team and became friends with her then  between the coach and her I was asked to join the team! When  I went to my first game I was very excited and scared because I  didn't know what the girls would  think of me because I only knew the coach and one  of the star players it turns out they liked me for who I am. Being  on the lacrosse team let me have the normal high school experience to a point. It made me feel like there's nothing that I can't do! I was on the team for both my Junior and senior year of high school and they were the two best years of my life because I always knew that these girls  were really there me anytime I needed them!! I love being able to say that I am there number one fan!!!

My team at sectional championship

Friendship

I'm going to start  this blog out with the question what does friendship mean to you? Friendship means to me someone that's always there for you no matter what! When I  started school I never thought I would make friends because of the chair and most people just think you're not intelligent when they see the chair. That all changed in 2002 when I met who I thought was going to be my best friend for life I thought. Although we were friends for the seven years we went to the same school in 2009 when we had to leave this school  because it was inhibiting us from reaching our full potential we started to lose contact we kept in contact for about three years after we left the school today I barely talk to this girl. When I started eighth-grade in the mainstream classroomI realized that most people didn't want to be my friend. When I started my freshman year of high school I was back in special-education and I made some friends but not truly best friends and again I don't talk to them anymore. In 2012 when I moved into my new house the house  I am currently living in now I had a lot of trouble making friends that was until February of  2013. On February 4, 2013 I met the girl who is my truly true best friend she's always there for me through thick and thin. The best part about our friendship is that she doesn't see my wheelchair she just sees me for me and encourages me not to be ashamed of my wheelchair and be comfortable in my own skin and the people who truly like me will be friends with me no matter what! In March 2013 I was asked to join the my high school's Girls lacrosse team. I  was on the team for my junior and senior year high school I have also made some very close friends because of that and I love those girls with all my heart. Thank you to everyone mentioned in this post of course I did not use your names but hopefully you know who you are!!!