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Old 08-18-2012, 06:54 PM   #1
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19 year olds, feeling like CP is taking over.

Hey everyone.

My names is Nick and i'm 19. I have had mild cerebral palsy of the right side of my body since birth. I've gone my whole life doing physical therapy, wore a leg brace during my younger years, though have never had any extreme surgery or anything. I used botox shots a lot when I was younger but began building an immunity to it, requiring triple the does, something my mom saw as unbeneficial due to the large amounts needed for such a slight change.

My cerebral palsy affects my right side, making my hand and arm stiffin up as well as making it difficult to control my hands and fingers creating the sort of "claw" look sometimes when doing things. My leg is also affected with the spasisity and extreme tightness.

Over the past 2 years now I believe my cerebral palsy has been getting worse. I dont know if it's all in my head but I feel more spastic, I feel as if I'm twitching more and more shakey. I am also suddenly becoming EXTREMELY self conscious around others and notice my cerebral palsy seems to take over when I get this feeling.

i know this could be just me but I'd love to chat with others and hear what you all have to say. It seems as if there isn't much knowledge on us older ones with cp.

I try to strecth and see and physical therapist once a week but I feel like nothings changing and if anything is getting worse. I know that there is no instant cure and that I need to live with this diagnosis but it's really starting to get at me, especially here in college where everyone is "normal". I absolutely dread meeting new people sometimes because I get nervous and my right hand tightens up making for quite an awkward hand shake. Always an awkward way to start off meeting someone.

So, I guess this is just more of a rant. I never get to talk to older people with cerebral palsy and this seems like a nice place.

Thanks for reading.

 
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Old 08-19-2012, 07:55 AM   #2
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Re: 19 year olds, feeling like CP is taking over.

Hi, Nick!

I am 19 and have mild cerebral palsy as well. I too feel as if my cerebral palsy has been getting worse. I have been having more pain in my joints and have more fatigue. I also can't seem to walk as as far as I used to (I use crutches) and been using a wheelchair more often whenever I go anywhere.

I know how you feel about being self conscious around others because I too have been struggling with the same thing. I've gotten to a point where I don't even want to meet other people and do not get out of the house much. I just feel so different from everyone else. The fact that I've never met anyone with cerebral palsy doesn't help either.

I recently graduated high school and have considered going to college, but I don't have the self confidence. I made good grades in school, but am still nervous about college. Did you feel the same way before you started college?

Last edited by Blue Dragon; 08-20-2012 at 12:03 PM.

 
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Old 08-25-2012, 06:02 PM   #3
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Re: 19 year olds, feeling like CP is taking over.

When you reach 20, the CP gets worse. Your muscles start aging "way" faster than the rest of you. You are not alone. A lot of us on here are experiencing the same thing. I know it can be a bit freaky at times.

 
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Old 08-26-2012, 03:51 AM   #4
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Re: 19 year olds, feeling like CP is taking over.

hey, i am 51, and it will get worse unless you continuously practise (e.g. exercise). but dont let that become your focus, enjoy life, it is the only one you get. if the disability becomes the focus, you'd never do anything and enjoy what comes. i've pretty much travelled the world, have the best job ever (self employed tai chi and martial arts instructor) and my own place, car etc.

 
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Old 08-26-2012, 03:55 AM   #5
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Re: 19 year olds, feeling like CP is taking over.

Quote:
Originally Posted by Blue Dragon View Post
Hi, Nick!

I am 19 and have mild cerebral palsy as well. I too feel as if my cerebral palsy has been getting worse. I have been having more pain in my joints and have more fatigue. I also can't seem to walk as as far as I used to (I use crutches) and been using a wheelchair more often whenever I go anywhere.

I know how you feel about being self conscious around others because I too have been struggling with the same thing. I've gotten to a point where I don't even want to meet other people and do not get out of the house much. I just feel so different from everyone else. The fact that I've never met anyone with cerebral palsy doesn't help either.

I recently graduated high school and have considered going to college, but I don't have the self confidence. I made good grades in school, but am still nervous about college. Did you feel the same way before you started college?
it has taken me a considerable time to become happy with life and i accept that people will stare or even not like you because of the physical condition you have. just say "go to hell" (in your mind) and go do what you want. NEVER let anyone or anything stop you. what right do they have? It's your life, go live it.

enjoy!

take up some tai chi or qigong it will help with the feelings you described...

 
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Old 08-28-2012, 07:17 PM   #6
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Re: 19 year olds, feeling like CP is taking over.

Hi Nick and Blue Dragon!

I just recently turned 19 years old(on 8/14). I have moderate spastic hemiparesis cerebral palsy that affects my right side, hydrocephalus and a variety of visual impairments. I have been going through occupational and physical therapy for 18 years. In 2002, I had a tendon transfer/heel cord legnthening operation, so that I could bend my knee when I walk. (I have also felt like my CP has been taking over) I have had many braces on my leg and splints on my arm. I graduated high school in May 2012, and I am currently going to my local technical school; especially because I want to stay close to home due to the fact that I cannot drive due to my partial visual loss. Hang in there! We all have a myriad of things that we can offer the world despite our limitations!

~CarolinaGirl814

 
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Old 10-10-2012, 05:00 PM   #7
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Re: 19 year olds, feeling like CP is taking over.

Hi guys,
I'm a little younger than you, 18, but I too have mild cerebral palsy. I have had a similar childhood as you, Nick, only mine is the left side. I have had physical therapy, leg braces, botox injections, and muscle extentions. By the age of 10 my parents felt that none of this was really helping and was tainting my childhood, so at the age of 11 they withdrew me from all treatments, except for check ups once a year. I wasn't allowed to do any sports either, in fear that I'd hurt myself worse, so my body has always been pretty tight and rigid. Every once and a while I would try to stretch out my muscles on my own from the stretches I remember, but I know I wasn't doing them right. Growing up has been a struggle, I have been completely isolated from the CP community, now, becoming an adult and making my own decisions, I have started to reach out, but the emotional damage I've recieved from the "normal" people in high school can never be undone. I have a lot of severe self esteem issues. I have no confidence either. I have been constantly ridiculed for being different and sucking at gym class.
Less about me, in regard to the physical changes as you age, I have felt them too, it might be a special case because I have gone so long untreated, but things do seem to get worse. Recently, I've noticed changes when the weather changes, when its rainy and dreary, my leg seems tighter for some reason. That sounds insane but it's what I've recognized. Also, I've notice I am losing movement. I can't walk as far as I use to without great pain, and my hip has been hurting me intensely. It doesn't seem to have the same range as my other one and I am convinced that I have a muscle tight there as well. I have gained more muscle spasms and terrible leg cramps. I know not everyone with CP has this symptom, but I have been noticing a mild speech problem where I mix up syllables, when growing up I've never had a documented speech problem.
I am very nervous and scared for what is to come. I have days now as a young adult where I feel fine the night before but when I wake up I go to walk and my leg gives out on me. "Normal" people,as they age, develop the problems we have from birth. I'm really scared to see what I'll be like in 50 years. I've been trying so hard to live a full life, but, when it comes to my CP, I can't find anyone that truly understands what I'm going through and accepts it. That being said, dating is a nightmare.
Nick, if you want to go to college, GO TO COLLEGE! Don't let CP hold you back more than it has too. I just started college this fall at a big university and its been quite an endearing experience, I haven't met anyone with CP, but I have met people with similar issues and I have truly found kindred spirits in them. COLLEGE IS NOTHING LIKE HIGH SCHOOL! You socialize with the people you want to, not have to, and MOST people have matured enough not to make fun of me.

Angela

 
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Old 12-20-2012, 12:10 PM   #8
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Re: 19 year olds, feeling like CP is taking over.

CP is diagnosed so broadly that it is difficult to relate to every person who has the CP diagnosis. I'll share my story for you -

I was born prematurely in 1990, and my physicians never thought that I would walk. My CP affects only my lower extremities. Luckily, my father is a physician, and I think that I can speak for him when I say, his medical expertise didn't stop him from trying to help me and seek out the best care for me, even if all of his colleagues weren't very optimistic.


I had my first major surgery when I was 3 1/2. I was told that I was one of the first people the surgery was performed on, so they are unaware of how someone with my condition will age with that particular surgery being performed. It was experimental, at the time. Later, I was also told that the surgery needed to be performed before I was 4, because after that time, it's too late to have any real affect. I have 8 scars up and down my legs as proof. I remember when I got out of surgery, my doctor came to visit me and he said, "when you get older and women ask you how you got those scars on your, you can tell them that you survived a war."

As I aged, I went to physical therapy, practically everyday from when I was 4 until I was 12. I used a walker everyday until I was 6, and crutches until I was about 8 or so. I also had an additional surgery when I was 9 that ensured a bone in my right leg would grow normally. I still walk with my leg braces, which go up to my knees. I can walk without them, but I choose to keep them on, because I'm more comfortable. I stayed very active as a kid. My father and I would go golfing each week, throw the baseball around at night or shoot the basketball to keep me moving. I don't know how much of a difference this made for me physically, but it certainly kept me smiling. Each time I would go see the doctor, he was amazed at how well I was doing. I remember him saying when I was 8, let's just keep him walking till he's 10, and when I was 10, let's just keep him walking till he's 15, and when I was 15, let's just keep him walking till he's 18. Once I turned 18, he told me that I made it through the hardest part, because keeping me walking until I was fully grown seemed impossible. I've stopped seeing him on a regular basis (medically, but I still have dinner with him from time to time). I don't think it's necessary to go see him in the office anymore, because at this time, I feel great, and he's just going to say... "let's keep you walking", so it's a waste of an afternoon for me to go sit in his office. Remember, they have no idea how someone like me will age, since I was one of the first to have the surgery performed.

I'm 22 now, and I have noticed some tightness. I'm still comfortable though. I don't attribute this to the CP "taking over". I attribute it to be not being as active. I used to get stretched everyday, and now I do not. I just cannot right now, because of my schedule. I've made school a top priority, and I will be graduating with an accounting degree and a 3.9 GPA in June, 2013. Currently, I have such a bad sleeping schedule and poor eating habits, because all I do is study, so I don't think it's realistic for me to go out and exercise right now. I don't think that it would make much difference. I plan to start exercising once I graduate though. I am not naive, I'm aware that something could happen where I lose some mobility, but truthfully, after what I've gone through, and how I wasn't even supposed to walk at all, I'm not really concerned about what could happen... I'm just enjoying life.

I also would like to mention that I was never ridiculed in school, and it makes me very sad that some of you had to go through that. For any parents of young people with CP who are concerned about this, I think that it just depends the kind of area you are in. I was raised in a great community, and I knew everyone I went to school with from K-12th grade, so it was never an issue. I was one of the first people in my grade to get their driver's license when I was 16, and I had a really great car, so that helped with dating... haha.

I thought that I was going to be miserable once I got to college though, because I wouldn't know anyone, and I feared how people would react to my leg braces, since they may not have ever encountered someone like me. Boy, was I wrong about that. Nobody has ever even questioned me. I've shared my story with my closest friends, and they women I've dated at my university, but the people in my class have never asked a question, which really surprises me. I really thought dating was going to be a nightmare too. I thought that the only women who would accept me were women who I grew up with, who have actually seen what I went through, but I was wrong about that too. I tell the women I date that there are a thousand and one reasons not to date me, and none of them have to deal with my CP... that seems to make them smile.

Anyway, I wanted to share my story, especially for young parents with young children who have the CP diagnosis. I didn't enjoy having surgery when I was 3 1/2. I didn't enjoy going to physical therapy everyday until I was 12, and it wasn't fun, and sometimes it was painful, and I cried because of that pain... but now, I'm 22, and I enjoy so much independence. I would not trade it for anything, so do whatever you can to help your child, even if it seems like an impossible road, because if my parents didn't do this for me, I would be confined to a wheelchair, and I'm not sure what I'd be doing right now.

Let me know if you have any specific questions -

 
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Old 01-09-2013, 11:59 PM   #9
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Re: 19 year olds, feeling like CP is taking over.

Hi Nick. I understand what you are going through. The best advice I can give you is to find a doctor who is a CP specialist. There are a couple that have been mentioned on here that are in CA so if you are still here I can send you that info. I'm sure the doctor will write you a physical therapy prescription. Try to find a therapist with CP experience who hasn't been out of school too long and knows the latest ways to help you, and someone who is keeping up with new developments/ideas in therapy. The more updated education you get, the more you can help yourself.

As I got older I noticed my balance was getting worse and it was getting more difficult to walk without holding onto anything. My walking is much worse when I know people are watching me, as you said for you. That is extremely difficult to overcome. I have yet to find any counselor who can change that part of me. But at least to take better care of your body, get to a good doctor who will steer you in the right direction with a therapist so you can get moving. Let me know if you need the names/numbers and I will get back to you. Good luck.

 
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Old 02-10-2013, 08:15 PM   #10
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Re: 19 year olds, feeling like CP is taking over.

Hello Nick,
I am 22 years old with mild CP and will successfully complete my bachelor's this spring in English. It is not always so physically noticeable for me but, it is noticeable in my speed and endurance levels. Yet, in my mind I was still born perfect. I don't care if I have CP, or some other disability in all honesty I wouldn't have it any other way. Yes, I've had to fight, and fight hard, but I am not my CP it is merely a part of me. Yes, I am a bit of a loner but, if I work hard I can do the same work anyone else can...maybe not in the same way but I can. And if they stare who freakin cares? I'll be the one laughing when their working at some drive thru asking if you'd like fries with that. Don't let anyone give you the impression your inferior or not capable of following your dreams because in all honesty...the only limitations are those you set for yourself.

Yes, some people will not like you, some will stare,etc. but letting yourself give into these feelings will only cause you pain. As some say haters are gonna hate no matter what you do, the only person you can control in this situation is yourself.

 
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