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Old 05-17-2012, 11:55 AM   #16
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pupollie HB User
Re: New here and don't fit in anywhere !!

i have a slight limp and a slight speech impediment. have always kept up with every else.
as i age people now assume i have had a stroke.
I keep on keeping on. I get TIRED.

 
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Old 05-18-2012, 12:03 AM   #17
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Re: New here and don't fit in anywhere !!

I am going through the same thing too.

Kim


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Originally Posted by pupollie View Post
i have a slight limp and a slight speech impediment. have always kept up with every else.
as i age people now assume i have had a stroke.
I keep on keeping on. I get TIRED.

 
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Old 05-18-2012, 12:09 AM   #18
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Re: New here and don't fit in anywhere !!

noone is the same....everyone has similar ailments but never in the same way.... dont worry about fitting in your ailment or to be the same as others with your desease... enjoy life your way and see your drs at regular visits....have good friends who know your problems but understand you want to have a life and live it fully in the best way you can....remember we are all unique and thank god for that or the world would be BORING....

 
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Old 05-19-2012, 09:20 PM   #19
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Re: New here and don't fit in anywhere !!

You are right about that, but you know what I am talking about.

Kim


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Originally Posted by dentalfairy View Post
noone is the same....everyone has similar ailments but never in the same way.... dont worry about fitting in your ailment or to be the same as others with your desease... enjoy life your way and see your drs at regular visits....have good friends who know your problems but understand you want to have a life and live it fully in the best way you can....remember we are all unique and thank god for that or the world would be BORING....

 
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Old 05-27-2012, 03:47 PM   #20
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maristrider HB User
Re: New here and don't fit in anywhere !!

Scott, what's your marathon PB? Long distance runners with CP generally don't get paralympic classified - no long distance events in our classifications. The on-paper Australian All-comers record for runners with CP is 5:16 for women, 5:36 for men. Get classified, and you might hold the CP marathon "record" in your country!

I'm a swimmer-turned-triathlete (swim, cycle, run). Limp, not much use of one hand, occasional falls, I've gone back and forth re using an AFO. I actually run more normally than I walk (many people with mild CP do). Have to be very good with stretches and physio tho - much more so than other athletes.

No, you're definitely not the only one. Not many marathoners amongst us, but not many in general population either!



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Originally Posted by scott8828 View Post
hey guys I'm new here my name is Scott i think the title pretty much says it all.. i have mild CP and i am kinda stuck i feel i don't fit in the CP world i am very active i swim , i race in marathons i lift weights ... I'm un affected mentally and pretty independent ... almost feel like i don't have CP BUT I KNOW I DO .. anyone else feel like this ?

its either ppl with CP are in wheelchairs and have to have help with their daily lives or ppl with cp that can't walk or talk

so where do i fit in ??? anyone else have this issue ?

 
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Old 05-29-2012, 07:09 AM   #21
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CPmomma HB User
Re: New here and don't fit in anywhere !!

Hi there, you don't know how excited I am to find your post. I've felt so lonely all my life thinking that I was the only one who has CP that is not in a wheelchair and/or mentally impaired. I have mild CP and wasn't even diagnosed until I was 8yo. I can walk but have a limp and I tire very quickly. It also affects my hands but im still able to use them. I just get a lot of cramps and they lock up on me. This is the first time I've come across people like me! :-) its weird because I'm 31yo and I'm just now researching and looking for more info on mild to moderate CP. I just always thought that everyone else with CP wouldn't be able to relate because even in the CP world I was "different". So, thanks for sharing your story and making me feel not so different. :-)

 
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Old 05-29-2012, 07:39 AM   #22
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scott8828 HB User
Re: New here and don't fit in anywhere !!

Quote:
Originally Posted by maristrider View Post
Scott, what's your marathon PB? Long distance runners with CP generally don't get paralympic classified - no long distance events in our classifications. The on-paper Australian All-comers record for runners with CP is 5:16 for women, 5:36 for men. Get classified, and you might hold the CP marathon "record" in your country!

I'm a swimmer-turned-triathlete (swim, cycle, run). Limp, not much use of one hand, occasional falls, I've gone back and forth re using an AFO. I actually run more normally than I walk (many people with mild CP do). Have to be very good with stretches and physio tho - much more so than other athletes.

No, you're definitely not the only one. Not many marathoners amongst us, but not many in general population either!
i use a hand cycle

 
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Old 05-29-2012, 11:10 AM   #23
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Re: New here and don't fit in anywhere !!

It is nice to have this message board to meet other people and not feel so out of place. Thanks for sharing your story.


Quote:
Originally Posted by CPmomma View Post
Hi there, you don't know how excited I am to find your post. I've felt so lonely all my life thinking that I was the only one who has CP that is not in a wheelchair and/or mentally impaired. I have mild CP and wasn't even diagnosed until I was 8yo. I can walk but have a limp and I tire very quickly. It also affects my hands but im still able to use them. I just get a lot of cramps and they lock up on me. This is the first time I've come across people like me! :-) its weird because I'm 31yo and I'm just now researching and looking for more info on mild to moderate CP. I just always thought that everyone else with CP wouldn't be able to relate because even in the CP world I was "different". So, thanks for sharing your story and making me feel not so different. :-)

 
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Old 06-21-2012, 12:19 PM   #24
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strattonshane81 HB User
Re: New here and don't fit in anywhere !!

I do not fit in either... Well, I've never been diagnosed with cerebral palsy. But i'm 99.9% certain I have it. I was always very active, playing sports, riding bikes. It effects my left side. Never could jump with my left leg to do a layup in basketball. My musculature is significantly less than in my right leg. A friend in high school called my limp "the pimp limp", i've stuck with it ever since. I also have a little bit of a learning disability, took RR (remedial resources) classes since 2nd grade. I'm now unemployed and am finding it impossible to get a job. I want to get insured, find out exactly what it is. I've smoked since I was 17 and have never had any of my organs examine, which I understand is pretty important for anyone with CP. I'm now 30 yrs old and I feel pretty hopeless and depressed these days. been dealing with depression for the past few years, actually. I dunno what to do.

 
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Old 06-26-2012, 04:21 PM   #25
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CarolinaGirl814 HB User
Re: New here and don't fit in anywhere !!

Hi! I have moderate spastic hemiplegic cerebral palsy that affects my right side. I was always in regular education classes all through school, but I had to be pulled out of class because I needed extra time to complete assignments. I am in the normal IQ range, and my cognitive function is that of an individual without cerebral palsy (normal). I have always been stuck because I cannot seem to find anyone that is dealing with CP. but they are cognitively normal.

 
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Old 06-28-2012, 11:14 PM   #26
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PMADrew09 HB User
Re: New here and don't fit in anywhere !!

Hey scott!

I understand where you are coming from i was very independent and had never met anyone with CP before... i used to run two miles a day with the ROTC...lift weights, body build and go to cycling classes when i was in college... i graduated and after years of abuse to my body (too much wear and tear and too much drinking in college) i am now losing my ability to walk and have to have help in my every day life... take care of your body everyone i always thought that i was immortal and that i would be extremely independent my entire life... you dont know what you have until it's gone
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Old 06-29-2012, 10:24 AM   #27
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scott8828 HB User
Re: New here and don't fit in anywhere !!

[QUOTE=PMADrew09;5009008]Hey scott!

I understand where you are coming from i was very independent and had never met anyone with CP before... i used to run two miles a day with the ROTC...lift weights, body build and go to cycling classes when i was in college... i graduated and after years of abuse to my body (too much wear and tear and too much drinking in college) i am now losing my ability to walk and have to have help in my every day life... take care of your body everyone i always thought that i was immortal and that i would be extremely independent my entire life... you dont know what you have until it's gone[/QUO

yeah theres not many ppl like us which kinda sucks

 
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Old 07-02-2012, 08:11 AM   #28
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enitharmon HB User
Re: New here and don't fit in anywhere !!

Oh my, I am so pleased to hear that there are other folks like me! I'm 34 and complications from my mild left CP have gotten progressively worse as I've gotten older. I had a lot of anger about it since my childhood doctors told me I wouldn't have any issues as I age. Now I don't walk as well, I have orthotics, I have lots of pain, I have more stiffness, and I tire out easily. I used to love taking long walks and bike rides--I'd spend an afternoon walking through a park, and I've been known to do a 30 or 40 mile bike ride in my younger days. Now I've gotten pretty inactive because of the symptoms I described above, and I feel like it's a vicious cycle. Don't feel good ---> don't exercise ---> continue to have pain and stiffness. Ugh.

I tend to feel pretty misunderstood with respect to how I struggle with the CP. I've managed to go to grad school and get a PhD, so everyone just tells me how lucky I am to be smart. It's not luck. It was a huge struggle, and it continues to be a struggle for me as I try to remain competitive in an academic job market that is cutthroat and expects 60-80 hour work weeks. It's probably obvious to the folks here that this is unsustainable for someone with even mild CP.

I am also new here--this is my first post. Glad to see that there are others like me and to potentially have a place to vent. Thanks for listening, and for letting me hijack your thread for a bit.

Cheers,
enitharmon

 
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Old 07-02-2012, 03:12 PM   #29
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Re: New here and don't fit in anywhere !!

Welcome to the board. That is the bad thing for some of us adults that are living with CP now, we thought we would have the same strength in our muscles like we did when we were younger, but then we notice things changing. Some of us are mad at doctors, because they either told us we wouldn't change or they can't do a thing. The information about the adults changing is a new information that has been out. I wish it was discovered decades ago. I am guessing it is that everybody is used to hearing about kids having CP, especially the ones that have it severely - and some of them don't make it to their teens. Sometimes, it makes me wonder if that is why the adults get ignored about it. Anyway, just to let you know - you are not alone.



Quote:
Originally Posted by enitharmon View Post
Oh my, I am so pleased to hear that there are other folks like me! I'm 34 and complications from my mild left CP have gotten progressively worse as I've gotten older. I had a lot of anger about it since my childhood doctors told me I wouldn't have any issues as I age. Now I don't walk as well, I have orthotics, I have lots of pain, I have more stiffness, and I tire out easily. I used to love taking long walks and bike rides--I'd spend an afternoon walking through a park, and I've been known to do a 30 or 40 mile bike ride in my younger days. Now I've gotten pretty inactive because of the symptoms I described above, and I feel like it's a vicious cycle. Don't feel good ---> don't exercise ---> continue to have pain and stiffness. Ugh.

I tend to feel pretty misunderstood with respect to how I struggle with the CP. I've managed to go to grad school and get a PhD, so everyone just tells me how lucky I am to be smart. It's not luck. It was a huge struggle, and it continues to be a struggle for me as I try to remain competitive in an academic job market that is cutthroat and expects 60-80 hour work weeks. It's probably obvious to the folks here that this is unsustainable for someone with even mild CP.

I am also new here--this is my first post. Glad to see that there are others like me and to potentially have a place to vent. Thanks for listening, and for letting me hijack your thread for a bit.

Cheers,
enitharmon

 
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Old 07-05-2012, 02:15 AM   #30
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PMADrew09 HB User
Re: New here and don't fit in anywhere !!

Quote:
Originally Posted by enitharmon View Post
Oh my, I am so pleased to hear that there are other folks like me! I'm 34 and complications from my mild left CP have gotten progressively worse as I've gotten older. I had a lot of anger about it since my childhood doctors told me I wouldn't have any issues as I age. Now I don't walk as well, I have orthotics, I have lots of pain, I have more stiffness, and I tire out easily. I used to love taking long walks and bike rides--I'd spend an afternoon walking through a park, and I've been known to do a 30 or 40 mile bike ride in my younger days. Now I've gotten pretty inactive because of the symptoms I described above, and I feel like it's a vicious cycle. Don't feel good ---> don't exercise ---> continue to have pain and stiffness. Ugh.

I tend to feel pretty misunderstood with respect to how I struggle with the CP. I've managed to go to grad school and get a PhD, so everyone just tells me how lucky I am to be smart. It's not luck. It was a huge struggle, and it continues to be a struggle for me as I try to remain competitive in an academic job market that is cutthroat and expects 60-80 hour work weeks. It's probably obvious to the folks here that this is unsustainable for someone with even mild CP.

I am also new here--this is my first post. Glad to see that there are others like me and to potentially have a place to vent. Thanks for listening, and for letting me hijack your thread for a bit.

Cheers,
enitharmon
Thank you so much! I thought i was going insane. I have been in sooooo much pain and I am angry too. My wife doesn't understand why I don't want to do much any more. Today i borrowed my friends Newport V5 which is a sort of deluxe AFO that cradles the lower back and thigh and for the first time in three months i could walk. so I took a walk round my complex! It felt so amazing and freeing i just about cried. The docs told me I'd never walk then I proved them wrong now in my mid 20s I'm so tired and in pain. I am a hermit i stay at home while the wife works wasting my 100,000 social work degree trying to muster the energy to clean house between rounds of baclofen and hydrocodone.
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