17
March

Happy St. Patty’s Day TeenCP

Hi Everyone!

Gosh, what a busy week! I started my new job as a receptionist at a hair salon…and let me tell you, working downtown Huntington Beach (bars galore) on St. Patricks Day is craaazy. People running in and out and the phones ringing off the hook… no wonder why they say girls are better multi taskers! Just kidding :p

I just wanted to stop in an say hi to all my TeenCP friends all over the world! I hope you had a fantastic week, and are looking forward to a great, relaxing weekend. Can you believe it is mid March already? Wow, I sure can’t..pretty soon it will be summer time and I will be off to France for the summer with my sis, yay! Any fun summer plans for you?

Ahh well aside from all the fuss about my busy life…I just went for a jog today, and I have been noticing that the top of my ankle (on my non-cp side) was killing me…I could not tell if it was my bone or muscle aching, but it was in the oddest spot, and the only thing I could possibly conclude is that my right leg is over compensating too much, and now all my different joints are feeling the effects off it. :( I think I should take up a consistent yoga class…that should do the trick. What do you think? Anything you could recommend I do to lessen the pressure on my joints, muscles ectt? It makes me sad that I cannot run the way I used to. Hmm…I think my soreness may also be due to the fact that I went on an extremely strenuous hike this past Sunday. (Pic up top is from the hike–so pretty– the scenery is a part of what keeps me going!) I don’t even know where to begin, I was so not mentally prepared for the inclines and the slippery gravel. But I did it, and I was limping around extra bad the rest of the day…it was worth the accomplished feeling I felt afterward though…because there were some people who were “normal” and they didn’t even finish. So ha! There’s dis-abilityfor all those underestimaters. ;p Haha I hope you know I am not completely serious…but I mean c’mon, you have to admit its at least 3x harder for us CPers to do any sort of physical activity, I can’t help but point out how great I feel when I am more physically able than someone who does not deal with CP. Empowering, almost…to accomplish something unexpected like that. It’s like when I saw the hill before me, I told myself there was NO way I was going to make it…but I surprised myself, and that is the greatest form of self-motivation ever. Have you ever had that moment where you just WOWed yourself? I hope so! It is an incredible feeling to push yourself past failure.

Well, I told myself I would not ramble on, I need some sleep before another busy day begins! Gotta love Fridays though…and speaking of tomorrow, I am going to meet with some great interns from UCP-OC to talk about some media awareness “stuff” for CP. I love to “represent” us teens and be apart of something big like that. How exciting this all is…even if it is just eing able to share my experiences with how this website has come to be what it is today..so honored!

Well, goodnight and stay lucky all you Irish TeenCpers! ;)

Happy Friday & Take Care.

-Katy

*Such an incredible view from the top of a park in Orange, CA last Sunday with my family and friends!*

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6
March

Thinking, Thinking…

Hey out there!

Just wanted to give a quick thank you to all my readers…TeenCP wouldn’t have been this wonderful without all you other teens and supporters out there that take time out of there day to read my posts. I LOVE your emails…keep sending them my way if you have the slightest desire. :) It really makes my day hearing your guys’ stories, and knowing that some of you feel comfortable enough to vent to me, and relate with me as well. I feel so lucky to be a part of what we have going on here, it has truly impacted my life more than most may think. So thanks TeenCPers…I smile because of all your support. :)

Anywho, just wanted to say I went on this GREAT hike this morning with a nice group of people from our gym. I got a pic, yes– but its from after the hike, off of Pacific Coast Hwy in Laguna Beach. So beautiful. The hike had a bit up an uphill, complemented with a downhill (thank goodness) and there were some slippery rocky pathways, but nothing my sturdy legs can’t handle. :p Although…come to think of it, I did almost trip over my own two feet in the market today out of no where. Clumsy me haha…I’ll blame it on the muscle fatigue from my hike how about that? Okay where was I…ah yes, so the hike went great and the weather was nice and cool off the coast. Perfect for a morning hike. On the uphills, I always have a problem with my shoe sliding off my heel if I don’t tie it tight enough, my foot just wont have it! Its frustrating but its a quick fix luckily. I would walk everywhere barefoot if it wasn’t so socially unacceptable and unsanitary! Haha, I would get around so much faster that way, wouldn’t you agree?

I was talking with my mom the other day about having CP and all that good stuff, and I rememer telling her that I sometimes that because I have CP as mild as I do, I wonder if there are some of you out there who feel almost “bugged” by me talking about my experiences with CP. Like maybe, there’s some one with CP more severely saying, “oh she doesn’t have it that bad, what’s there to talk about….” and I guess what I am trying to say is that, I want you to know that even though I may not have CP to the extent that you do, or whoever that may be, I still feel like it’s important that I relate to you all in some way or another. Maybe not in the physical aspect of dealing with CP per say, but the emotional, and mental health of it all is just as important to me. I am aware that some of you have CP 5 times worse than I do…and yeah maybe me talking about my hike is irrelevant to you, personally…but I still want you to know that I want to still be able to be on the same level here, and say that Cerebral Palsy is something we ALL can talk about openly. If you think about it this way, we are all humans and CP is just something that we happen to live with. Sometimes it’s our insecurity, and sometimes it’s our motivation to go beyond the norm. Without CP, I don’t think I’d ever be as intrinsically motivated as I am today…. and that goes for everyone in the sense that maybe their insecurity isn’t that they walk funny, maybe it’s that they have a nervous laugh or tick, or they don’t do well in school. We all have something to share, and its just as all as valid as someone else’s story, right? So I hope some of you don’t feel like I’m just some girl who wants to talk about my life…I’m just a girl who wants to get people thinking. I want you to see something positive about yourself you may have never noticed, just by your own self-reflection. I believe people who self-reflect become so much happier, and well rounded…because like I’ve said before, life is all about perspective. :)

Have a nice week!

-Katy

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17
February

Cerebral Palsy, Finding Resilience

Hello Friends,

So I heard the word resilience used by the health teacher I aid for, when describing pretty much the components of being a healthy person, and it just got me thinking.

Resilience” in psychology is the positive capacity of people to copewith stress and adversity. (Wikipedia)

Resilience is defined as a dynamic process that individuals exhibit positive behavioral adaptation when they encounter significant adversity, trauma, tragedy, threats, or even significant sources of stress. It is different from strengths or developmental assets which are a characteristic of an entire population, regardless of the level of adversity they face. (Wikipedia)

I felt l like I really wanted to break this word and its meaning apart because I think it applies to so many things in life, especially those who deal with some sort of disability, trauma, or set back. What I first noticed about the definition is that it continued on to say, “Resilience is most commonly understood as a process, and not a trait of an individual.” I wanted to stress this because even I mistakenly thought resilience was a personal character trait, not really a “process” or something that occurs due to the effect our environment has on us as individuals. Certain events, people, and other healthy stimuli lead us to not be resilient, but to have the stability and optimism that causes resilience to occur.

You may be thinking, Okay, so what?

What I am really trying to get at is, we are all capable of positivity, of emotional strength…but it all comes down to our environment. Agree or disagree, but I believe that we are who we are in part because of our nurture, who and what we surround ourselves with. Although CP may not be as adverse as Post Traumatic Stress Disorder (among many examples)  I do believe that to be able to deal with the challenges that CP brings each of us, we should really try to have a comprehensive understanding of how to go about that in a healthy way. By creating a world that brings forth all the good things about you, you’ll start to notice your stresses diminishing. This, I guarantee. It may be hard to admit that you feel depressed or stressed out because of how you walk or can’t do certain things, get a certain person to like you…but it is also another form of resiliency in process. To have the ability to take yourself outside of your situation and address your own problems and how to cope takes an immense amount of strength and skills many others who live a very comfortable, sheltered life simply cannot do.

In a way, I am writing this post just for me, these words are just my thoughts in second person…as weird as that sounds. I have to convince myself a lot of the time that I am capable of so much more that what my CP negates me physically. I figure, since the way I walk is not really going to change, I am going to have to change. I’ve become a pro at putting on a smile and saying I’m fine, but that is just not going to cut it. I am learning how to smile for myself and be proud of what I have ahead of me, the CP in me is just along for the ride. Life is exciting, life is a process and I think only time will tell how each of us will come to understand the possibility that life in itself holds for every one out there who feels like they are flawed or scrutinized.

So here’s to you, TeenCPers and all those times you saw your CP as a part of your downfall. Think of it in a way that it is all a part of your journey toward the process of finding resilience.

Happy almost Friday!

-Katy

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24
October

A Flashback on Cerebral Palsy

Hey all!

I hope you had a nice weekend, it went by way too fast (like always) in my opinion! I can gladly say I am DONE with testing for college! SAT’s and ACT’s, goodbye. :) I took the ACT this Saturday, and I think I did pretty well…such a relief! Onto my next big task: AP English Mid-term on Tuesday ahh! But my friend Melanie is coming into town from Oregon so that’ll be super fun to see her….not to mention Halloween now only a week away!! :) My friends and I have decided to be superheroes: Redline is my friend Katelyn, Purple Fire is Sara, Mr. & Mrs. Black is Melanie and her boyfriend, Andre and last but not least, Pink Ice is  yours truly! :) So that’ll be a blast and definitely something to look forward to after I knock out the craziness of school. We’ll venture out to a party or two and then head back to my place to munch on some candy and hang out by our firepit! :) I almost forgot, we have to carve pumpkins sometime this week… Do you guys still partake in that tradition? :) Or are there any other Halloween traditions that you have continued throughout the years?

At the request of a TeenCP Mama, Karin (her cute lil baby Mia has Cerebral Palsy) I’ve been asked to think back to when I was a little girl myself, and share how CP affected me and what I did to gain such an optimistic outlook on living life with a physical disability. Now keep in mind, this is solely my experiences with CP…there are different severities, cases, and all sorts of issues that arise when it really comes down to it. I am extremely fortunate to be in the state of health that I am today, when I look back on my “diagnosis”, if you will, of Cerebral Palsy.

I was born three months pre-maturely as a twin (one of the most common occurrences of CP) and the doctor informed my parents that I was almost doomed to a life long fate of wheelchairs, speech and communication problems… basically, all things that encompassed a worst-case scenario of CP, was what I was regarded as, by this doctor. I had a level 4/5 bleed on the right, and a level 5/5 bleed on the left side of the brain. My parents were dumbfounded, probably in a state of shock for days on end…wondering if i was even going to survive!

A few weeks after this news, my mom was informed by another doctor that the brain has extraordinary healing powers; that no one can truly, factually say that I was going to ‘be’ a certain way. And well, fast- forward a few years later and that doctor was right! My mom says to this day, that it was her’s and my father’s ignorance of what CP was that made me as strong, and as physically capable as I am today. Personally, I’ve come to believe that my parents “ignorance” was not a bad thing at all; on the contrary… it is their upbringing that forced me to adapt to a lifestyle where maybe my brain wasn’t truly ready for, in lieu of having CP. But that didn’t matter, all I knew was that everything just took a bit more time, patience, and effort. As a child, I never once thought I was a victim of something. It just is what it is. To be completely honest, I didn’t educate myself about CP until I was about 12 or so, when my dad asked me, have you ever looked up what Cerebral Palsy–the term– actually means? I just simply wasn’t aware of my condition. Yeah, there were times when I had to explain it to new people that I met, but it was always something I played off as just something that made me have to try that much harder to keep up with every one else. Instead of crawling my dad said I’d “army crawl”-literally. When I was three, I wobbled around with a walker. When I was eight, I learned how to ride a bike.  All that was on my mind was, “do what Sara does, ride a skateboard on your stomach if you must, so you can go off with Matt and Sara while they skateboarded ‘normally’ around the neighborhood…I really just did what I had to do to do the things that all my siblings and friends were doing at the time. It wasn’t ever a problem because I didn’t know any different.

As I got older I became aware that I walked different, that I was slower and less coordinated than my twin sis, that people may judge me…but that didn’t affect my all too much. I was still just like them, I could still have fun, laugh, and enjoy life as I am. I have days where I am down, but those are becoming less frequent because I have the quality of life that would not be possible, had I not been born with Cerebral Palsy.

I really believe that the human brain is your ultimate control center, that if you really NEED to do something, your body will adapt in miraculous ways so that you can accomplish what you set out to do. It’s definitely not easy, but it’s possible. That goes for anyone: “normal,” physical, or even mental disabilities aside…the brain has the power to adapt-if you allow it to. Does it sound absurd? Maybe. Why do I believe this concept? Because I feel that I’ve experienced it. Let me ask you this: have you ever had that moment when you just think, “wow I am done, I cannot possibly go any further, try any harder than this, stretch any longer. There is just no way.” Have you ever gone past that point? Beyond the limits? (as Mr. Bonner Paddock would know so well) *see resources* Because if you have not, I strongly recommend putting yourself in that position. Test yourself, go to failure, and I know you will be amazed at what you can do.

I could go on and on…and on and on, but I think I’ll stop here for now. :) There are so many things on my mind right now that I could go into, so many instances that I could bring up so we can just say “to be continued.”

I enjoy writing so much, especially about things that are so powerful as this. I also hope that my experiences feel relatable to some of you teens out there…or even to those have friends or kids with CP like Karin and her daughter, Mia. It means a lot to me that you continue to take time out of your day to read my posts.

Have a great Monday everyone!

-Katy

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19
October

“Rain and CP= Fail”

Hey out there!

My title is in quotes because these are words of truth spoken by a fellow TeenCP’er herself, Allison Cardwell of San Diego, CA! Props to her though, for having to roll around in a wheel chair in the rain! I can’t imagine, the water is unavoidable, no doubt! I nearly fell down today trying to dodge a puddle at school. Haha,we hope to get together one of these days, if time permits us to have any FUN! Lately its been school and college apps for the both of us….and I am sure many of you out there as well. Tiresome, but it’ll all be worth it in the end. I just hope I’m not too burnt out when my decision letters finally come. :p I am trying to get all my apps done by mid- November so I can enjoy my Thanksgiving and Winter Breaks! I take the ACT this Saturday again…the last of my tests that account for college. Yay!

Anyway, back to this post’s title…RAIN, wow. I have never seen it rain this hard in Southern Cal! Thunder and lightening…a bit of hail, the real deal! I felt like I was back in Michigan listening to the thunder cracking out there. So crazy…so crazy indeed, that having CP seems pretty hazardous with all the rain that pours down. Slipping, falling, soaked feet… I’m sure some of you guys know the drill. I remember last year when I had my cast on for the ‘brace’ type effect…. I had to wear a mens size 13 rainboot! You can imagine someone like me trugging around school in those bad boys haha. More funny than embarrasing I’ll admit. Ohh, some of the things we must do for ourselves. :p Any funny/noteworthy stories about having CP and dealing with heavy rainfall/inclement weather??

Well I’m off to read up on some sleeping patterns for AP Psych! Lovin that class by the way. We are doing a sleep/dream study on ourselves for the next 30 days…I’m definitely not a solid sleeper, I tend to wake up at least 2 times a night. I guess I’ll figure out why soon enough!

Hope you all are doing well and staying healthy as  we enter the winter months! Take care.

Halloween is creepin’ up :D

-Katy

p.s. does anyone else agree that mom’s homemade pumkin walnut muffins sound warm and delicious in this imclement weather? Mmm tomorrow morning’s breakfast, (with scrambled eggs of course!) you are planned.

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21
March

a Looking Glass into Cerebral Palsy

Hey there!

So I have been feeling like I am much more uneducated on CP than I should be, considering Im affected by it each minute I live! So here’s the deal, I did a little research and here is what I came up with, there are four types of  Cerebral Palsy…I let wikipedia break it down for ya :p I feel like they do a good job of encompassing all the FAQ’s. Hopefully it isn’t too much to take in, feel free to just skim over it…I bolded a few parts that caught my attention, as it applies to some commonalities of CP. I have a few more info to the right colums under “resources” that you maybe want to check out as well. I just thought you might want to go on here to read up on CP, as some other webs are a bit intimidating and hard to sort out. I’m not sure if you have already done any research on your own, nevertheless, this is here… who knows, maybe researching is how you came across my TCP web! :)

CEREBRAL PALSY

Spastic cerebral palsy is by far the most common type, occurring in 70% to 80% of all cases. Moreover, spastic CP accompanies one of the other types in 30% of all cases. People with this type are hypertonic and have a neuromuscular condition stemming from damage to the corticospinal tract or the motor cortex that affects the nervous system’s ability to receive gamma amino butyric acid in the area(s) affected by the disability. Spastic CP is further classified by topography dependent on the region of the body affected; these include:

  • Spastic hemiplegia (one side being affected). Generally, injury to muscle-nerves controlled by the brain’s left side will cause a right body deficit, and vice versa. Typically, people that have spastic hemiplegia are the most ambulatory, although they generally have dynamic equinus on the affected side and are primarily prescribed ankle-foot orthoses to prevent said equinus.[11] —-This is the definition of my case!
  •  
  • Spastic diplegia (the lower extremities are affected with little to no upper-body spasticity). The most common form of the spastic forms. Most people with spastic diplegia are fully ambulatory and have a scissors gait. Flexed knees and hips to varying degrees are common. Hip problems, dislocations, and in three-quarters of spastic diplegics, also strabismus (crossed eyes), can be present as well. In addition, these individuals are often nearsighted. The intelligence of a person with spastic diplegia is unaffected by the condition.
  • Spastic tetraplegia (all four limbs affected equally). People with spastic quadriplegia are the least likely to be able to walk, or if they can, to want to walk, because their muscles are too tight and it is too much effort to do so. Some children with quadriplegia also have hemiparetic tremors, an uncontrollable shaking that affects the limbs on one side of the body and impairs normal movement.

Occasionally, terms such as monoplegia, paraplegia, triplegia, and pentaplegia may also be used to refer to specific manifestations of the spasticity.

Ataxia (ICD-10 G80.4) type symptoms can be caused by damage to the cerebellum. The forms of ataxia are less common types of cerebral palsy, occurring in at most 10% of all cases. Some of these individuals have hypotonia and tremors. Motor skills such as writing, typing, or using scissors might be affected, as well as balance, especially while walking. It is common for individuals to have difficulty with visual and/or auditory processing.

Athetoid or dyskinetic is mixed muscle tone — People with athetoid CP have trouble holding themselves in an upright, steady position for sitting or walking, and often show involuntary motions. For some people with athetoid CP, it takes a lot of work and concentration to get their hand to a certain spot (like scratching their nose or reaching for a cup). Because of their mixed tone and trouble keeping a position, they may not be able to hold onto objects (such as a toothbrush or pencil). About one quarter of all people with CP have athetoid CP. The damage occurs to the extrapyramidal motor system and/or pyramidal tract and to the basal ganglia. It occurs in 10% to 20% percent of all cases. In newborn infants, high bilirubin levels in the blood, if left untreated, can lead to brain damage in certain areas (kernicterus). This may also lead to athetoid cerebral palsy.

People with hypotonic CP appear limp and can move only a little or can’t move at all.

***I feel they don’t touch on social development very much… in my opinion, I believe it is one of any parents biggest worries to see their child be socially inept. With that said, it is essential to help integrate children with CP into “normal” activities with other children, in hopes that they will feel as equally accepted, loved, and respected, regardless of their disability or insecurity. However, I do realize that there are serveral more severe cases of CP where social situations cannot be implemented in one’s therapy, or develpment program and growth, due to the severity of his or her CP. So, this could mean the simplest of activities toward progression– from learning how to tie their own shoes, to riding a bike, or painting a picture with their classmates. Anything that creates a healthy source of interaction among children will help the child feel important, and included. Yet in every human being’s life there comes a time when they just need to be told that they are loved and befriended.  Support is HUGE in the development of a child–with or without CP. A child needs nothing more than the love and acceptance of their parents, family, and peers. If you give them that– dont fret, they will grow into the beautiful human beings you always hoped they’d be. There will be times of frustration, confusion, and hopelessness, but you will get through those hardships. See that you really make an attempt to understand that person around you with CP–whether they be your child, friend, brother or mother, and know that that is all you can do. That is all they want. To be understood.***

  • Symptoms

All types of CP are characterized by abnormal muscle tone (i.e. slouching over while sitting), reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

Babies born with severe CP often have an irregular posture; their bodies may be either very floppy or very stiff. Birth defects, such as spinal curvature, a small jawbone, or a small head sometimes occur along with CP. Symptoms may appear or change as a child gets older. Some babies born with CP do not show obvious signs right away. Classically, CP becomes evident when the baby reaches the developmental stage at six and a half to 9 months and is starting to mobilise, where preferential use of limbs, asymmetry or gross motor developmental delay is seen.

Secondary conditions can include seizures, epilepsy, apraxia, dysarthria or other communication disorders, eating problems, sensory impairments, mental retardation, learning disabilities, and/or behavioral disorders.

Speech and language disorders are common in people with Cerebral Palsy. The incidence of dysarthria is estimated to range from 31% to 88%. Speech problems are associated with poor respiratory control, laryngeal and velopharyngeal dysfunction as well as oral articulation disorders that are due to restricted movement in the oral-facial muscles. There are three major types of dysarthria in cerebral palsy: spastic, dyskinetic (athetosis) and ataxic. Speech impairments in spastic dysarthria involves four major abnormalities of voluntary movement: spasticity, weakness, limited range of motion and slowness of movement. Speech mechanism impairment in athetosis involves a disorder in the regulation of breathing patterns, laryngeal dysfunction (monopitch, low, weak and breathy voice quality). It is also associated with articulatory dysfunction (large range of jaw movements), inappropriate positioning of the tongue, instability of velar elevation. Athetoid dysarthria is caused by disruption of the internal sensorimotor feedback system for appropriate motor commands, which leads to the generation of faulty movements that are perceived by others as involuntary. Ataxic dysarthria is uncommon in cerebral palsy. The speech characteristics are: imprecise consonants, irregular articulatory breakdown, distorted vowels, excess and equal stress, prolonged phonemes, slow rate, monopitch, monoloudness and harsh voice. Overall language delay is associated with problems of mental retardation, hearing impairment and learned helplessness. Children with cerebral palsy are at risk of learned helplessness and becoming passive communicators, initiating little communication. Early intervention with this clientele often targets situations in which children communicate with others, so that they learn that they can control people and objects in their environment through this communication, including making choices, decisions and mistakes.

Early Nutritional Support In one cohort study of 490 premature infants discharged from the NICU, the rate of growth during hospital stay was related to neurological function at 18 and 22 months of age. The study found a significant decrease in the incidence of cerebral palsy in the group of premature infants with the highest growth velocity. This study suggests that adequate nutrition and growth play a protective role in the development of cerebral palsy.

Physiotherapy (PT) programs are designed to encourage the patient to build a strength base for improved gait and volitional movement, together with stretching programs to limit contractures. Many experts believe that life-long physiotherapy is crucial to maintain muscle tone, bone structure, and prevent dislocation of the joints.

Occupational therapy helps adults and children maximise their function, adapt to their limitations and live as independently as possible.

Orthotic devices such as ankle-foot orthoses (AFOs) are often prescribed to minimise gait irregularities. AFOs have been found to improve several measures of ambulation, including reducing energy expenditure and increasing speed and stride length. —very helpful!

Speech therapy helps control the muscles of the mouth and jaw, and helps improve communication. Just as CP can affect the way a person moves their arms and legs, it can also affect the way they move their mouth, face and head. This can make it hard for the person to breathe; talk clearly; and bite, chew and swallow food. Speech therapy often starts before a child begins school and continues throughout the school years.

Hyperbaric oxygen therapy (HBOT), in which pressurized oxygen is inhaled inside a hyperbaric chamber, has been used to treat CP under the theory that improving oxygen availability to damaged brain cells can reactivate some of them to function normally. Its use to treat CP is controversial. A 2007 systematic review concluded that the effect of HBOT on CP is not significantly different from that of pressurizened room air, and that some children undergoing HBOT will experience adverse events such as seizures and the need for ear pressure equalization tubes; due to poor quality of data assessment the review also concluded that estimates of the prevalence of adverse events are uncertain.

Nutritional counseling may help when dietary needs are not met because of problems with eating certain foods.

Both massage therapy and hatha yoga are designed to help relax tense muscles, strengthen muscles, and keep joints flexible. Hatha yoga breathing exercises are sometimes used to try to prevent lung infections. More research is needed to determine the health benefits of these therapies for people with CP. –LOVE YOGA!

Surgery for people with CP usually involves one or a combination of:

  • Loosening tight muscles and releasing fixed joints, most often performed on the hips, knees, hamstrings, and ankles. In rare cases, this surgery may be used for people with stiffness of their elbows, wrists, hands, and fingers. —this is what serial casting did for me, yet a more mild, prolonged form of aid!
  • The insertion of a Baclofen Pump usually during the stages while a patient is a young adult. This is usually placed in the left abdomen. It is a pump that is connected to the spinal cord, whereby it sends bits of Baclofen alleviating the continuous muscle flexion. Baclofen is a muscle relaxant and is often given PO to patients to help counter the effects of spasticity.
  • Straightening abnormal twists of the leg bones, i.e. femur (termed femoral anteversion or antetorsion) and tibia (tibial torsion). This is a secondary complication caused by the spastic muscles generating abnormal forces on the bones, and often results in intoeing (pigeon-toed gait). The surgery is called derotation osteotomy, in which the bone is broken (cut) and then set in the correct alignment.
  • Cutting nerves on the limbs most affected by movements and spasms. This procedure, called a rhizotomy, “rhizo” meaning root and “tomy” meaning “a cutting of” from the Greek suffix ‘tomia’ reduces spasms and allows more flexibility and control of the affected limbs and joints.
  • Botulinum Toxin A (Botox) injections into muscles that are either spastic or have contractures, the aim being to relieve the disability and pain produced by the inappropriately contracting muscle. — Did this at age 10, more mild form of aid as well!

A new study has found that cooling the bodies and blood of high-risk full-term babies shortly after birth may significantly reduce disability or death.

Cord Blood Therapy: There are no published randomized controlled trials or meta-analysis of this treatment modality in cerebral palsy. In March 2008 a boy diagnosed with cerebral palsy appeared on the Today Show with his family. The parents noted that he could not walk on his own and appeared to be “swallowing his tongue” at times. He was eventually diagnosed with cerebral palsy and could only walk with the aid of a walker for a short time. Earlier that year he participated in a clinical trial involving his own cord blood that his parents had saved when he was born. His parents reported that within 5 days after the procedure he was walking on his own and talking, something his mother said he was not capable of on his own and it was doubtful he would ever be able to do on his own. They also reported that the doctors also told them that if his rate of progress continues uninterrupted until he is 7 he will be pronounced cured.

Conductive education (CE) was developed in Hungary from 1945 based on the work of András Pető. It is a unified system of rehabilitation for people with neurological disorders including cerebral palsy, Parkinson’s disease and multiple sclerosis, amongst other conditions. It is theorised to improve mobility, self-esteem, stamina and independence as well as daily living skills and social skills. The conductor is the professional who delivers CE in partnership with parents and children. Skills learned during CE should be applied to everyday life and can help to develop age-appropriate cognitive, social and emotional skills. It is available at specialized centers.

Biofeedback is an alternative therapy in which people with CP learn how to control their affected muscles. Some people learn ways to reduce muscle tension with this technique. Biofeedback does not help everyone with CP.

Neuro-cognitive therapy. It is based upon two proven principles. (1) Neural Plasticity. The brain is capable of altering its own structure and functioning to meet the demands of any particular environment. Consequently if the child is provided with an appropriate neurological environment, he will have the best chance of making progress. (2) Learning can lead to development. As early as the early 1900s, this was being proven by a psychologist named Lev Vygotsky. He proposed that children’s learning is a social activity, which is achieved by interaction with more skilled members of society. There are many studies, which provide evidence for this claim. there are however, as yet no controlled studies on neuro-cognitive therapy.

Patterning is a controversial form of alternative therapy for people with CP. The method is promoted by The Institutes for the Achievement of Human Potential (IAHP), a Philadelphia nonprofit, but has been criticized by the American Academy of Pediatrics.[The IAHP’s methods have been endorsed by Linus Pauling, as well as some parents of children treated with their methods.

Ok so that pretty much covers the mechanics of it, I think. Haha… I bolded some stuff I found interesting, as it applies to my life with CP. Seeing as Spastic CP ( I have that!) is the most common, I found this other article:

http://www.indianchild.com/CerebralPalsy/spastic-cerebral-palsy.htm

On a less informative note, I had another soccer game today! It was pretty awesome if I do say so myself. :) I almost scored a goal, except one girl got in my way. My my my it was such an inconvenience. :p I stretcheed really well afterwards, hopefully I’ll stay this limber, otherwise this running will do no good for me in the future. I feel like I have really kicked up the gears lately, I can run about 3 miles now at a steady pace without stopping, I am so happy. :) My parents, a few others ( and my sister!!) are doing a 200 mile relay race from Santa Barbara to Dana Point, alllll down the Pacific Coast Highway for about two days non-stop! It is a 12 man team, and each runner has 3 legs of different times and milage. I am so excited for them to kick some butt! I will be waiting for them here as they travel down the coast. Yay! :) I sometimes wish I could run that much, but it is just too hard on my body and I dont want to risk my health at this point in my life. Trying to be smart about it is all! Life is about keeping everything in moderation.

Hope all is well! Can’t wait for spring break, are you all counting down the days or what!?  Be on soon,

-Katy

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18
February

Feelin’ bueno

Hello Everyone!

I am in a good mood today. :) I just confirmed my attendance at this nice, formal luncheon that is held by the Dayle Mcintosh Center www.daylemc.org  this Friday….in recognition of me and my efforts with this website. :) Exciting stuff! I am being nominated for the “Apple of Our Eye”  Education award. It would be so cool to win! I’ll let you all know how it goes. :) I don’t feel the need to be rewarded for hosting this blog since it is something I love to do! I hope to keep this blog up for years to come, and maybe pass it off one day to a worthy TCPer! I hope that those of you who read about me and my life with CP, walk away with something. Maybe a new perspective on life, a new way to improve your body, mind, spirt ect. because even by just writing about my experiences, I feel so much more at peace with who I am. I feel like I am contributing something to the outside world..even if it’s something as small as how a hike I went on. Because maybe another kid my age can relate to me, or a young couple who struggle with their child who has CP can read about me and have a sense of hope, that everything will be ok. I love to write, and to be able to take what I love to do, and write about something that I live with everyday, is truly an eye-opening experience. I have learned so much about who I am as a person,  just by being honest myself…these past few months with the castings and all that, I have really tested my limits, and I know now that I can get through anything if I got through that rough patch. It’s a great feeling of satisfaction, and I hope that you all will feel that sense of self awareness sometime in your life.

Well I’m off to a nice dinner made by the mamcita. I hope you are all doing well in your lively endevours, feel free to email me about anything that is on your mind, anything you are going through…I’ll always be around!

Take care & Thanks for listening, Katy

Cerebral Palsy Help

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8
February

Yay for good news!

Hi Everyone!

I hope you all had a fantastic Superbowl Sunday! It was such a fun day here, my mom and sister both ran the half marathon held here every year, and then we hosted a huge party at out house for the superbowl! I’m not much of a football follower, but it was fun seeing everyone get together and have a good time. Did you guys do anything fun this weekend?

I just had my therapy appointment, andI left with such a positive attitude! My therapist measured by flexibility, and since the castings, I have improved tremendously! I almost have my foot at a 90 degree angle, and my ankle improved by 15 degrees, when I flex it. I go back in two weeks for a check  up, and get an update on wearing my brace, and doing my at home stretching. I am so happy, I didn’t realize that the casting did that much for me! I am walking more evenly, and able to exercise still, with a stronger pace and fluency. I can’t wait to keep moving forward and see more improvements on my own! Wish me luck.

I hope you all have a fabulous week, I am about to attack my load of homework since I’ve put it off this weekend, and get these next two Monday’s off with thanks to the past Presidents of our country. Wish me luck for this one too. Haha…I’ll be on again soon!

-Katy

Cerebral Palsy Help

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23
November

Hallelujah!

Hey guys!

Yay for Thanksgiving break!! I am so excited to be able to relax a bit and eat yummy food of course. :)

I hope you all have had a splendid week, and doing something fun for your time off!

Tomorrow I go for an appointment with my orthopedist, who did my last surgery when I was only 5 years old! I will be discussing my options– whether that be surgery, botox injections, cerial casting…I just hope to finds some answers! I feel like I need to do something, because lately I have been feeling the affects of my CP set in, as I am done growing now and I am probably as tight as ever, unfortunately.

I’ll let you know how that goes ;)

Enjoy your time off I know I will! I’m headed to San Fransisco for a few days this week, just to explore the city with my immediate family. I’m excited! I gotta get ready to head out on Tuesday, but I’ll be back on tomorrow so stay tuned. :)

I’m also in the middle of writing a story for www.teenshealth.com, so if you have any subjects you feel I should touch on, speak up! Thanks guys. Have a great week, and Thanksgiving meal!

-Katy

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18
October

TCP Survey!

Hello Everybody!

I hope your weekend is winding down and you can all enjoy a nice evening at home before another hectic week! I just took a great yoga class this morning with my sister and friends and I felt so relaxed afterwards, I think I am going to sign up for a membership when I go again! Unlimited yoga= rejuvination & flexibility time! Hopefully this will be new start for me on my way to becoming more self reliant with stretching. :)

Alsoooo….my friend Sarah Bram whom I met through TCP has kindly asked for me to post her survey on here for all of us with CP to take! I am excited for her to see some results, so please help us both by completing the survey. Who knows maybe you’ll discover something about yourself along the way! As a matter of fact, I am about to do it myself! :)

http://www.surveyconsole.com/console/gateway/596021-0-0

Enjoy, feel free to leave feedback on the comment button to the left. :D

-Katy

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