Stories of Adults, Parents, & Children with Cerebral Palsy

 

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Josh
Age 20

ok, well i’ve been busy but here’s my story: I was diagnosed with cerebral palsy on the right side of my body due to a premature birth but the disorder mostly affects my right hand- my right hand had a robotic, claw-like grip when i picked up various objects.

I was so young I never really understood why my right hand just wouldn’t work like i wanted it to but i went to therapy sessions and my hand got stronger and my fingers were more accurate, i was never good at video games but back then the controllers weren’t as complicated as today’s lol, i was a kid and never really cared about my cp situation- those were happier times.

As I got older i remember finding my old medical records and realizing for the 1st time that it wasn’t just my hand that was affected- my leg as well.

My athleticism made up for most things like sports although lil’ things like turning the pages of a book were slightly harder. It was wierd, I felt like I was keeping a dark secret because my cp case isn’t as noticeable as most other cases.

Now that I’m 20 going on 21, looking for jobs where I have to come to the reality of either hiding my secret because it may be detrimental to my success and the liability of the businsess or company if my case is known or take a risk and hope my honesty and character will allow my employer to look past my disorder and give me a shot. I also wish that i was as deligent and determined as i was when i was in therapy over the years i’ve become lazy with my hand and just simply using my other hand.

I feel bad knowing that other ppl with this disorder may have it worse than i do and are working on their problems nonstop and overcoming challenges, the only reason i actually try to get it better is because i don’t want atrophies or contractures-working as an intern in a nursing home showed me that it isn’t a good thing to have, I really think i need a personal trainer or therapist cause my cp problem isn’t a big enough priority to me but honestly it needs to be.

So that’s my story.

I hope you can post this on your site just as i typed it cause i feel that i’ve let down fellow ‘cp soldiers’ who have endured through their issues like soldiers and didn’t give up like i am slowly doing.

 

LiL Moe

October 19, 2009

I heard your baby is large and I am inducing you in the morning.

Let me say I was nervous, anxious and excited. I waited nine whole long months to meet my son. Not once did I close my eyes that night. It was finally time to arrive at the hospital and my whole family was awaiting our arrival. I got into my room and in went the Pitocin.

I was doing great and feeling even better. Within three hours of being induced my water broke. I was even more scared and anxious. A few hours went by and my sister kept asking why the lines were going below where they should be.

The nurse kept saying oh it’s ok and that’s normal. What my sister was reading was the Fetal Monitor Graph. This monitors the baby’s heart rate. As a few more hours went by I was put on oxygen and flipped in to all types of positions. The graph still showed lines dropping. As time progressed I felt myself get weaker and weaker.

I was not dialating and the lines were still dropping. Around midnight they decided if I did not dilate then it was possible for a c-section. I was nervous and scared to have one. I finally started to progress. I remember when it was time to push like it was yesterday. It was around 8:30am on October 21, 2009.

The nurse told me to find a focus on something in the room and keep my eyes on it. To keep breathing and push hard. My doctor came in and said he would return in ten minutes.

Well guess what in ten minutes I was screaming where is my doctor. They kept telling me he would come. My sister and sons father were my coaching partners. Now looking back its pretty funny because my sister would only look in my eye and tell me you can do it and my sons father was pulling my leg to the other side of the hospital trying to keep himself from passing out.

The nurse would tell me I see hair and I would yell back I do not care about hair do you see a head? Twenty five long hours of labor I was ready to pass out. I kept drifting away and coming back. I would start to cry and tell them I could not push anymore I needed to sleep.

No one listened nor did they care until the unthinkable happened. After an hour of pushing, about ten to fifteen nurses & doctors came running in my room.

It happened so quick, I went to push to STOP pushing, sign consent forms and something is wrong. All I remember was having a nurse yell at me to sign consent for something and me telling her I could not do it and them poking at me.

As the rushed me to the OR I kept crying I have to push and they would yell no STOP. When we got into the OR an anateshiologist came in introduced himself and put me to sleep. When I woke it was around 12:30.

I opened my eyes to a nurse on one side of me and my son’s father on the other. I then opened them again only to see my sweet baby in an incubator with a nurse and to EMS men telling me ok we are taking your baby. Mohammed was born at 9:52am, 9lbs 12ozs and 21inches long. You ask why the emergency c-section, well Mohammed’s heart rate decelerated in to the low 40 and 50’s for the first twenty four hours. The hour of me pushing and him losing oxygen made him die. He died in m stomach and they had to race against time to get him out.

When they finally did it took them about fifteen minutes to resuscitate him. Being separated at his birth was the longest & hardest three days of my life.

Only to ask what happened and no one had answers. I ended up having a blood transfusion before I was discharged because of all the blood I lost. Never imagined my labor and delivery would end like this. When I finally was able to see my son in the NICU at the hospital he was taken to, it was tears instantly. My baby was hooked to monitors, breathing machines and anything and everything they had there.

The first week was a lot of testing and monitoring for him. At six days old was the day we were sat down and explained what was going on with him. The doctor said your son has cerebral Palsy and will never walk, talk and probably die by the age of fifteen.

I held Mohammed so tight as they sat there and told us all these awful things. He ended up having no gag reflux and at one point and time the nurses could sick their fingers all the way down his throat. So at a week and half old he had surgery for a G-tube.

His days and nights were messed up and he was going through a lot. Finally after two and half long weeks in the NICU he was able to come home.

It was the roughest time when he came home. He just cried and cried and cried. I did not know what to do and neither did anyone else.

At each appointment for the first six months of his life were just devastating. No one had anything good to say about him. Neurology kept saying his injury was awful and he will not walk, talk, and sit alone, ophthalmology told us we think he is cordially blind, PMR doctor told us he will be confined to a wheel chair, his tone was unbalanced and with a feeding tube in permanently that he has a less of a chance to live.

Hearing all of that was gutrenching and hard.

We always questioned the what ifs, what if they would of listened when we said his heart was dropping, what if they would of did a c-section, what if the hospital would of used their brains better? But every day we strived just that harder to make sure he beat the odds. Mohammed is now ten months old and suffers from Cerebral palsy Spastic Quadriplegia, Infantile spasms, Hydracephalus, muscle dystonia, developmentally delayed and 100% G-tube fed.

With all of these diagnoses come along a ton of medications. Currently we are on five. But let me say before you start to feel bad or even cry my son is the happiest child ever.

He scoots all over the house on his back, his vision is GREAT, hearing is GREAT, he can hold toys, and he tries to reach for objects. His head control is getting much better and he is so social able. He loves to play, he lets you know if something is bothering him or of he likes/dislikes something. No one thought he would even be able to see and he has already overcome that.

As a parent of a special needs child it’s hard and hurtful.

But I must say I have looked at life in a whole new perspective and would not want life with him any different. He may not get up and walk or crawl or even sit, he may not say mama or dada but he has the biggest smile on his face no matter what is going on. Mohammed is no different than anyone else out there. He is a miracle baby and god’s gift to me and the world.

My advice to everyone is stay on top of doctors and never fear to question them, you know yourself & child better than anyone. I learned that very fast. Never give up and always stay strong.

 

Junior
24

Story of my life with Cerebral Palsy.

I was born early from my original day. The doctors pronounce me dead my cord was around my neck. however they bring me back. one of the nurse tell my parents. if i will live. i was basically going to be a vegetable. not going to move, walk, or talk.

I was crawling for my first nine years. then my family and i see a doctor that he specialist with Cerebral Palsy. he operate my both ham strings that was 1998. then in 2002 i have another operation back on my calfs. after all of those surgeries.

I am much better than before. now i am 24 moving around by myself with no walker. can talk as well. i guess that nurse was right after all. some times when i am giving up on my dream on driving and don’t believe in miracles.

I just look at myself in the mirror and i see a big miracle all the time. that my story with Cerebral Palsy.

Matthew

“Living with Cerebral Palsy and Fighting the Incurable – My Story”

BY: Matthew J. Powell

Cerebral Palsy like every disability has its challenges.  The stiff muscles during the day, the tremors which make it almost a chore to brush your teeth, and shaving well… lets not even go there.  This is a journey that has had its struggles, its cases of depression, and yes, even its shed of tears.

Some of what i have experienced has been some of my worst experiences of my life.  However, if it were not for these experiences I would not have memories in which I will never forget.  My name is Matthew Powell and I have Cerebral Palsy.

While I go about my day-to-day activities I will often hear the question, “Why do you limp?”  This is not a question that drives me away, nor is it a question that insults me.  In fact, I embrace these questions because it brings about awareness for this incurable condition.  I would tell the person that I have Cerebral Palsy, which is a disability that is caused by not gaining enough oxygen to your brain.  It can effect a person physically, mentally, or you can have a combination of both symptoms.

immediately, a look of concern and bewilderment goes across the person’s  face.  They will often times say I’m sorry to hear that.  I will often respond with a quick smile an say to them that “every day you spend feeling sorry for yourself is a day wasted.”  This is not to say that I have never had cases of depression.  In fact, it’s quite the contrary.  But first lets go back to the beginning.

I was born on December 20, 1990 three months before my due date.  I only weighed 2lbs and I was hooked up to all different kinds of monitors and respirators.  While most parents experience the joy of holding the miracle they have just created in their arms, my parents had to hold their breath in a waiting room where the doctors said I wouldn’t even make it through the night.

69 days later I was finally able to spend a night in my own home.  However, I was still experiencing symptoms in which a normal healthy baby doesn’t exhibit.  I was diagnosed with Cerebral Palsy in 1992.  My mother devastated took me to countless doctors and specialists who told her I would never read, write, or go to regular school.

My mom told me that not only will I complete these tasks; I will excel at them.  To this day I can still see the tears in her eyes when she tells me this story, which shows me the ultimate love a parent, can have for their child.  I have a countless number of people who make me the person who I am today.  If I mentioned all of them this story would be infinite.  These people are people whom I consider my guardian angels.

After 2 surgeries and countless therapy to keep my muscles loose, her I am.  For awhile after I graduated high school, I was in a lot of pain and I felt like this disability was bringing me down.  But then I remembered what my best friend Justin Hunter once told me, something that will last me a lifetime.  “People will only hold you as high as you hold yourself.”

In May of 2009 I created a group on facebook called “Living with Cerebral Palsy and Fighting the Incurable.”  This was a group created for anyone who has CP, knows someone with CP, or supports the fight for a cure.  It is a group that spreads and believes in optimism.

Our optimism comes from each other.  This group and the stories I hear from people all over the world are what keep me going.  I have made countless friends who help me deal with these everyday challenges.  Whether it is Karl Cremen, who shared the story about his son Oscar calling him daddy for the first time using technology, which helps him communicate with others.

Or Tom Samson from Scranton PA who has joined the group to help his best friend deal with CP, and lets not forget John Phistner, from Dunkirk Illinois who has helped me organize this group in hope to someday find a cure for his daughter.  We are 730 members strong, and still growing.

We each travel our own journey but together we know that nothing is impossible!  This is my journey in which I have traveled for 19 years.  It is one journey among thousands.  But with your help, if we keep spreading awareness combined with optimism, I along with many others can reach my destination before another 19 years pass.

 

Dave Dulin

I’ve had cp my whole life (ataxia, a rare form of cp)

Diagnosed at birth,  my Mother was told,   by the time I was 5yrs, if I didn’t walk,  I would never walk,  I walked when I was 11yrs old.

I am 34 now, while I still hsve some problem’s   balence,Tremmor’s etc,  I am still hopeful that someday we WILL find a cure for this.

But,  I do work out,  and evrything I can to make living with this rare form of cp a little easier to deal with.