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Old 08-31-2008, 01:21 PM   #1
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nexxtlevel HB User
Talking I am new have questions, need insights, what is your life like?

I appreciate you taking the time to read all of this, this will be kind of raw so I hope you are able to follow along and if you read it all I would appreciate your thoughts If you have CP or are near to those who dear.

A little bit about me. I am 26 years old and for all those years I have never really talked to anyone who has CP about CP. I have only encountered 3 people growing up who had it and one other person in my adult life who had it. That said I have Spastic diplegia by definition it affects the way that I walk and that is about it. I have had a heel cord and hamstring lengthening, in the 80’s and early 90’s and that has helped a lot with my ability to straighten my legs. My posture is “abnormal” I have a “swayed back” due to a weak trunk (which is very irritating to me) and over the last few years I have taken to walking on the inside of my foot.

Growing up I heavily resisted the therapy the braces as I am sure many of you did because after all “other kids didn’t have to do it”. To some degree I still have that attitude and many days I forget that I even have it until I pass by a mirror or have to do something that highlights my limitation. This is both the result of a positive attitude but also largely denial, which is why I don’t think I talk about it much. As a function of this denial I haven’t been to Physical therapy since I was 12.

Since it is difficult for me to see past my own experience because I don’t have anyone to role model or any prior to draw from, I want to know more about you (if you have CP) or the insights you gain from helping your children who have CP.

For example have you attended PT most of your life or not, if so, how has it helped you? How were you able to afford it. Now that I am older I don’t get the benefit of being on my parents insurance and PT seems incredibly expensive. How do you do it?
What treatments have been most effective for you?

What is your life like, what is your experience with CP?
What has your dating life been like? I would especially like to hear about this from other males. This has always been an area of insecurity for me, over the years I have learned how to talk to females and gain their interest but underneath it all I think there is still that feeling of hey I have CP, I can’t get too close to this person. In essences I think a lot of the time I make CP a bigger issue than it actually is in the eyes of the other person.
However, I do think males have to deal with an extra issue that females may not have to. This is the subconscious desire of the female to have someone is a protector, which goes back to cave man times, survival of the fittest so to speak. I think this is especially true in my peer group, so I am curious how have you overcome this, especially out in the club?

*********Note to anyone who has just recently had a child with CP*********

I remember once when I was probably about 7 a lady was talking to my physical therapist for the first time because she had just recently had twins who both had CP. I had just arrived to therapy and wasn’t aware that she was there and I came storming in the room yelling hey…. And my therapist said Just like that…. I remember this ladies babies were crying and I started talking to them and they stopped crying, I later asked my therapist why she said just like that and what she was talking about. She explained to me that the mother was concerned what would become of her children, what would happen to them, what would they be like, how would they end up….. and when I came storming in the room excited at the time probably because I had a lemon drop from the front office lady, she told her that they could end up “just like that”.
Now I tell the story because of the distress of the mother but the point is, I have had a great life as I am sure many people with CP do. If I have any regrets it’s probably that I haven’t taken my situation as seriously as I could have but the possibilities for someone with CP CAN be just as limitless as someone without CP. I share this in hopes that it might bring you some peace as I know that when I was born my Father prayed nightly that I would be able to walk (the Dr’s said I never would) and I do.

 
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Old 09-05-2008, 10:12 PM   #2
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Re: I am new have questions, need insights, what is your life like?

I enjoyed reading your post, as it almost mirrored some of my life. I am 28 years old and had a hamstring lengthening when I 10. I remember the rehab after the procedure being difficult, but thanks to my strong and supporting family I pulled through and was much better off. Before the surgery I could walk only with crutches, whereas afterward I could walk independently, albeit with a modified gait and below average balance.

My teenage years were "normal", obviously I was not the popular jock, but I had some good friends who accepted me for who I was. I have a good job and live on my own so I can't complain. I've never really let my CP slow me down. Although as I get closer to thirty I've noticed I get winded when walking just short distances, and lots of lower back pain. Stretching my hamstrings helps this. Most of my struggles now are my own fault because I did no stretching or exercising throughout my late teens and early-mid twenties, just lots of drinking and partying.

To all the parents with young children with CP, don't treat them differently, and don't let them feel sorry for themselves. A strong will can overcome a weak body.

Keep the posts coming, its good to know I'm not alone!

 
Old 09-06-2008, 03:09 PM   #3
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Deborah7 HB User
Re: I am new have questions, need insights, what is your life like?

Hello Nexxtlevel, Welcome aboard. I have CP too. And my life is good. Enjoy your stay here.

God bless,
Deborah

 
Old 09-10-2008, 06:16 AM   #4
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open_the_door HB User
Re: I am new have questions, need insights, what is your life like?

Quote:
Originally Posted by yesac80 View Post
I enjoyed reading your post, as it almost mirrored some of my life. I am 28 years old and had a hamstring lengthening when I 10. I remember the rehab after the procedure being difficult, but thanks to my strong and supporting family I pulled through and was much better off. Before the surgery I could walk only with crutches, whereas afterward I could walk independently, albeit with a modified gait and below average balance.

My teenage years were "normal", obviously I was not the popular jock, but I had some good friends who accepted me for who I was. I have a good job and live on my own so I can't complain. I've never really let my CP slow me down. Although as I get closer to thirty I've noticed I get winded when walking just short distances, and lots of lower back pain. Stretching my hamstrings helps this. Most of my struggles now are my own fault because I did no stretching or exercising throughout my late teens and early-mid twenties, just lots of drinking and partying.

To all the parents with young children with CP, don't treat them differently, and don't let them feel sorry for themselves. A strong will can overcome a weak body.

Keep the posts coming, its good to know I'm not alone!
I like your quote "A Strong Will Can Overcome a Weak Body" You just made my day.......

 
Old 09-10-2008, 06:17 PM   #5
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Re: I am new have questions, need insights, what is your life like?

nexxtlevel,
Good question, what is our life like? When I went into first grade my father told me that if anyone picked on me to kick them with my brace. They were metal back then and packed quite a punch. He also told me, never carry a crutch because to carry one is to surrender yourself to defeat. He was speaking metaphorically of course. My life is like jazz music, indiscernible. Most women do like the man who rides in and saves the damsel in distress. When I was in the hospital 6 months into our marriage, after a diagnosis of MS, I told him to run, it was okay I said. He didn't run. November we will celebrate 23yrs of marriage. You are male and I am unsure of the extent of your disability, but my advice would be the same. Be who you are, don't hide or pretend. The man within you is proven through how courageous you are and that is evident in your refusal to give your disability power. Most women are looking for substance and sex for us is brain powered. Be true to yourself and it is likely she will find you.

 
Old 09-10-2008, 07:48 PM   #6
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open_the_door HB User
Re: I am new have questions, need insights, what is your life like?

Quote:
Originally Posted by kristine1 View Post
nexxtlevel,
Good question, what is our life like? When I went into first grade my father told me that if anyone picked on me to kick them with my brace. They were metal back then and packed quite a punch. He also told me, never carry a crutch because to carry one is to surrender yourself to defeat. He was speaking metaphorically of course. My life is like jazz music, indiscernible. Most women do like the man who rides in and saves the damsel in distress. When I was in the hospital 6 months into our marriage, after a diagnosis of MS, I told him to run, it was okay I said. He didn't run. November we will celebrate 23yrs of marriage. You are male and I am unsure of the extent of your disability, but my advice would be the same. Be who you are, don't hide or pretend. The man within you is proven through how courageous you are and that is evident in your refusal to give your disability power. Most women are looking for substance and sex for us is brain powered. Be true to yourself and it is likely she will find you.

Awesome reply. It is so nice to hear such positive reinforcement. Thank goodness for positive people like you.....you go girl

 
Old 09-11-2008, 07:46 AM   #7
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yonkersmom HB User
Question Re: I am new have questions, need insights, what is your life like?

Hi Everyone-

So, I'm new here and the reason I joined is I found this post during a Google search for "Bilateral Hamstring Lengthening". I do not have CP but my son who is now 7 (and not walking) does. Christopher had the bilateral hamstring lengthening surgery when he was about 2. 5 years later it is as if he's never had it. My son's orthopaedic doctor now wants to redo the surgery in addition to the heel cord lengthening and the muscle abductor thingy (helps him open and close his legs while on his back?). That's 3 surgeries in one. He's just a little boy. He's so happy and his PT is trying to teach him how to walk and thinks the surgery could impede his progress. Is this true? I dont' know what to do. I dodn't if I should get the surgery or not. It's scheduled for Sept. 23, 2008 and I have to make a decision quick. He has to do his pre-op on 9/18. There are so many unanswered questions at this point. I guess I should have asked them at the doctor's appt. I don't know what I was thinking.

Any advice, feedback on experiences etc, is MUCH appreciated.

Thank you
Michelle

 
Old 09-11-2008, 08:47 AM   #8
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Re: I am new have questions, need insights, what is your life like?

Ok I just spoke to my son's doctors and they are not going to do the heel cord release. they are concerned his hips will disclocate so they have to do the hips. they will do the hamstrings too. I guess the heel cords were a concern for the doctors at his school since they are working on walking.

does anyone who had the hamstring release had to wear a cast on the legs after?

 
Old 09-11-2008, 02:35 PM   #9
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Re: I am new have questions, need insights, what is your life like?

Hi nexxtlevel -

It's nice to see you here. I did read your post a few days ago but am just now getting back to give you a proper reply.

I'm 25, and have ataxic CP and I doubt there's a muscle in my body that doesn't have some degree of spasticity. For the first 6 years of my life I was surrounded by kids with every kind of disability. It wasn't until 2nd grade when I switched into a mainstream school that I figured out I was an oddity. That's when I decided that I hated therapy (well, except pool therapy – best summer of my LIFE, lol) and for a few years I wanted to be like everyone else.

Then in 6th grade my life got turned upside down and PT and my wonderful therapist were my refuge for the next 3 years. I met more people with disabilities and I decided that I didn't want to be like everyone else.

My PT discontinued my sessions when I was 15 and I haven't worn braces or saw a orthopedist since I was 9. I was OK with all of this and didn't resist: I was excited. The new PT that decided she didn't need to see me anymore wasn't very friendly and I was starting to fall back into the mind set that I wanted to fit in in HS and I didn't want to be different by dealing with PT (esp. because it was during school hours.)

At first I didn't notice a difference but now looking back 10 years later there is a HUGE decrease in my abilities since discontinuing PT: I fall weekly (if not, daily); my muscles are tight as ever, I'm constantly grabbing for anything to keep me steady when I walk and I'm a complete weakling (I used to do strength training in PT along with stretching and balance exercises.)

While I'm not a permanent resident of the state of denial, I vacation there often. But if I didn't have regular vacations into denial I wouldn't get the courage to do things like move out of my parents' house and into my own apartment and while I occasionally try to forget about my limitations they do exist: the biggest obstacle I haven't figured out is not being comfortable driving so I am reminded daily that I can't get further than a mile down the road without asking for someone to drive me somewhere.

Since it is difficult for me to see past my own experience because I don’t have anyone to role model or any prior to draw from, I want to know more about you (if you have CP) or the insights you gain from helping your children who have CP.

For example have you attended PT most of your life or not, if so, how has it helped you?


18 mos. - 15 years all provided through the local school system. Haven't been since. Regular PT kept my muscles strong and loose. It gave me more stamina to get through my days and I don't remember having a lot of pain while I was in PT. At least not pain like I have not.
What treatments have been most effective for you?
Regular PT a few hours a week. A basic home stretching program designed by my PT that I can do every day at will. Also pool/aqua therapy was FANTASIC. Mind you, I was seven but hot water is heaven to me.

I haven't had surgery or been give any medicinal intervention (drugs/injections) so I can't comment on those things but with every passing year I am becoming less resistant to the idea of medication.

What is your life like, what is your experience with CP?


My life is good. I've lived in my own apartment for 2.5 years, I've began walking to the grocery store since moving closer to it. I'm looking for a job, but it's very hard without having regular transportation and not sure of how I would cope physically with a job.

I've also had my ups and downs in my good life. I suffer from inherited mental issues (anxiety and depression) while my CP is not the cause of these problems, it does occasionally make them worse. Both issues come and go but it's been about six months since I've really had a problem with either.

I sometimes have pain from 20 years of walking with CP. It ranges from mild annoying pain to where I was yesterday where all I could do was lay flat on my back and not move because of back pain that was setting off series of horrible, painful spasms in my hips legs and back. That's really the only thing about my CP that I would change if I could.

CP is just a part of me, it's definitely made me more open, inventive and creative.

What has your dating life been like?


Non-existent? In high school I went out with groups of couples and other single people but the people I was TRULY interested in didn't know I was alive.

As an adult, I'm sure it wouldn't be so bad if I actually had somewhere to go to meet people. I live in the middle of nowhere and they only people around here are married, too old or creepy. Besides, contrary to popular culture, you don't meet your soulmate in the produce department.

I would especially like to hear about this from other males.


Sorry! I'm a girl...

In essences I think a lot of the time I make CP a bigger issue than it actually is in the eyes of the other person.


It think you are right, but I do the same thing.

However, I do think males have to deal with an extra issue that females may not have to. This is the subconscious desire of the female to have someone is a protector, which goes back to cave man times, survival of the fittest so to speak.


From the female perspective: I could make the argument that guys want to have a woman to nurture them, to take care of their needs. And not necessarily want to be taking care of my needs. So we disabled females have to overcome our own antiquated ideas.

I hope I've been able to be of some use to you, we're a quiet board here. I come on every few weeks and check up on things but there aren't enough active posters to come on every day.

Last edited by Malwm01; 09-11-2008 at 02:41 PM.

 
Old 10-04-2008, 11:04 AM   #10
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Re: I am new have questions, need insights, what is your life like?

Dear NextLevel and everyone else,

Just found this site and I'm looking forward to connecting with people. But first before I forget, to the woman with the 7 year who that may need the heel cord release, I've had many in my time, including one when I was six years old. Yes, it hurt like hell and yes I needed casts afterwards, though this was in 1985, but the surgeries did improve my life dramatically.

Nextlevel I know exactly how you feel, our medical cases sound rather similar. I have cp and after many surgeries I have a moderate limp and my hands tend to raise a little when I walk, but that's about it. I have a drivers license and lived a relatively normal childhood.

Dating was/is difficult for me, not only because of my cp but because I am very short (only 5'1) and oddly enough I found women care more about height than the cp. Maybe it goes back to what you were saying about women wanting someone to protect them. Generally, short guys are less sought after. I know there are many short women out there but that seems to be more socially acceptable, just as being an overweight man is more socially acceptable than an overweight woman.

Height + CP has made things difficult for me, but certainly not impossible. I've dated 7-8 women, had a good sex life and some long term relationships, but things never seemed to work out. At some point I realized that I really wasn't attracted to the women I was dating, either physically or emotionally, but I dated them anyway because deep down, I think I felt no one else would ever want me so I'd better latch onto to the first person I can find.

I repeated this pattern over and over again until I finally became aware of what I was doing and even then it is a hard pattern to break. There is no magic pill that cures insecurities, self loathing or learned behaviors, the road to being ok with myself is a long one and I'm just beginning.

For me the first step was the hardest: coming to love what was good about myself and believing that I was worthy of finding a person who would love me back. I also came to the realization that I was far harsher a critic of myself than anyone else could have possibly been. I had been making the assumption that no one would ever find me attractive. Even when people did, it was like it didn't register or I found a way to dismiss it. And then I guess, finally, I needed to be ok with being single until I found the person I wanted. I decided to be bold and even took a job in South Korea for a year to further my emotional independence from the familiar and the mundane.

These steps are still a work in progress for me, but my point is simply that so many times we reject ourselves to spare the pain of having someone else do it. Give yourself a chance and you may be surprised how quickly things can fall into place.

Hope that helps,

Todd

 
Old 10-04-2008, 11:36 PM   #11
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Thumbs up Re: I am new have questions, need insights, what is your life like?

Yesac80 : Thanks for the reply brother, I get the feeling our lives have been similar in some ways. My drink of choice is Vodka anything and in an effort to avoid procrastinating forever away I am looking into getting into therapy right now. We can’t change anything about our yesterdays but we own our today’s and honestly there is nothing that says you can’t feel like you were in your early 20’s or teens again. Heck I intend to feel even better than I did in my teens, seeing as I have never really been physically active.

kristine1: That’s an awesome story and I think you give sage advice. Someone once told me that I had to overcome a lot of obstacles in order to get to where I am to this day and within me I had something that could not be taught. The thing he was referring to he said was the will to win. I think this is the gift that CP gives all of us, if we choose to embrace it, from the day we are born we challenge the perceptions, the realities of every day. This in part speaks to the courage you speak of and I suppose, I do not acknowledge that enough as I am sure there are many others who do not.
I am sure the Juliet to my Romeo is out there somewhere, I have never lost hope… Thanks again…

Malwm01 : Thank you for taking the time to write such a thoughtful reply and diligently answering my questions. It’s sounds like you have done quite a bit to overcome your obstacles and that is awesome. After reading your response I realized I made a gross misstatement in my initial post. I was in a poor mood when I said I fall into denial about having CP. It is true that most days I don’t think I have it but that really isn’t the prevailing thought. You see the truth is I am not a label, you are not a label. I am not Nexxtlevel who has CP… I am just Nexxtlevel I forget the CP because it is part of who I am and it really doesn’t matter. It’s as relevant as my eyes being blue or my skin being white. To sit around and label myself with CP is only to put myself in the position of letting it own me of letting it matter and that’s the magic, we control it. Sure, I might run into obstacles that others may not but the truth is on a daily basis people run into obstacles, that’s not CP it’s life. So I am sorry for making such a poor statement and I wish to reveal to you that anything is possible not because you take vacations to the island of denial but simply because it is the truth. See yourself for who you are and who you are isn’t CP and when you aren’t thinking about CP it is because you are living your truth, not because you are in denial. That said, strive then to live your truth every day rather than occasionally.

I hope that makes sense and again thank you.

Todd: Thanks for sharing and for the great post. I think you are exactly right. I tend to project my own fears on to people, I decide that they can’t handle this or that before I have even given them a chance to. I love your story about your experience with women. I have had many opportunities that are like that which you speak of. I didn’t however partake in them because I knew what they were. In all reality though much of what you were doing to a large degree could be seen as common male behavior. But I think it is cool that you have reached a level of self-awareness that has allowed you to challenge your previous limitations and issues.
I am in the process of doing the same so it is great to hear about your mission to do the same. If you ever feel like it, I would love to hear about any breakthroughs or progress you make.

In general: I would like to thank everyone for giving real and genuine feedback and also for having such positive attitudes, that’s exactly what I was wanting. I made this post maybe not entirely identical in another forum and got to hear about how everything was going downhill and the entire forum was just full of negativity.
I am not saying that we have to wear rose colored glasses all the time. As I once heard if you look at your garden and say “there are no weeds, there are no weeds, there are no weeds” the weeds will over take your garden…. But what we do have is the choice to pull the weeds and nurture the garden or neglect the garden and let the weeds over take it.
So again thank you for all of that and if you make any progress or do anything great or break through any struggles I would love to hear about that. If this thread stays alive I would like it to focus on the positive, there are so many others that focus on the negative.
Also I am a big fan of the secret I imagine most of you have at least heard of it and seen it..
If not thesecret. Tv (no space) …

Be well, do well, live great!
Nexxt Level

Last edited by nexxtlevel; 10-04-2008 at 11:40 PM.

 
Old 11-10-2008, 09:37 AM   #12
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bg19 HB User
Re: I am new have questions, need insights, what is your life like?

I am a 60 year old born with right spastic hemiplegia. The right-side limbs are shorter and smaller than the left. The arm cannot be straightened and the hand is of limited use and cannot be turned palm up. The only "treatments" I received growing up were having a wedge on the right shoe, restricted use of tennis shoes, and annual visits to the orthopaedist.

I have had a normal life. Growing up I played sports year round with the kids in the neighborhood. Later on, I played tennis, golfed, and bowled. I have been driving for over 40 years without the use of any aids and have been married to a normal wife for over 30 years.

I have a B.S. degree in accounting and am the finance division of a multi-million dollar organization. Working one-handed, I handle all accounting duties and related financial functions using one finger for data entry and the calculator.

During my forties, I developed arthritis in my lower right back. This was caused by the accumulated effects of tourqueing placed on the smaller right side from years of physical activity. Prescribed daily morning exercises alleviates the stiffness.

 
Old 11-10-2008, 07:16 PM   #13
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nexxtlevel HB User
Re: I am new have questions, need insights, what is your life like?

Quote:
Originally Posted by bg19 View Post
I am a 60 year old born with right spastic hemiplegia. The right-side limbs are shorter and smaller than the left. The arm cannot be straightened and the hand is of limited use and cannot be turned palm up. The only "treatments" I received growing up were having a wedge on the right shoe, restricted use of tennis shoes, and annual visits to the orthopaedist.

I have had a normal life. Growing up I played sports year round with the kids in the neighborhood. Later on, I played tennis, golfed, and bowled. I have been driving for over 40 years without the use of any aids and have been married to a normal wife for over 30 years.

I have a B.S. degree in accounting and am the finance division of a multi-million dollar organization. Working one-handed, I handle all accounting duties and related financial functions using one finger for data entry and the calculator.

During my forties, I developed arthritis in my lower right back. This was caused by the accumulated effects of tourqueing placed on the smaller right side from years of physical activity. Prescribed daily morning exercises alleviates the stiffness.

This is one of the best posts I have read.. Thanks for sharing

 
Old 11-30-2008, 09:07 PM   #14
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Re: I am new have questions, need insights, what is your life like?

It's funny to me how similar your story is to my own.

I was diagnosed with CP, spastic diplegia, when I was three years old and not walking yet.

While I do not have a weak trunk (I don't think), I too had a heel cord and hamstring lengthening when I was about eight years old. I also refused to wear the braces and haven't done physical therapy since about 3rd grade.

As far as my life, I would say it is mostly normal. I have a really close group of about 5 friends and have many other friends. I believe my CP actually has equipped me with better social skills than many other people who have not had to overcome adversity.

I try to walk as much as possible, but I rely on a wheelchair much of the time because of the discomfort of walking. I recently have began walking on the outside of my right foot and inside of my left foot. However, I enjoy playing street hockey and football, and recently have learned to drive a car with a manual transmission, which was exciting for me!

Dating life? What dating life? I've been on two dates (three if you want to count the blind date bust) and nothing came out of either, although one of the girls was interested. But that's pretty much it - I hate to say it, but sometimes it feels like a first impression is made on the disability, which pretty much cripples (pun intended ) my chances with any girls.

Still, I have a good attitude most of the time about my disability, and am always told my my good friends the right girl will come along eventually. Well she sure is taking her time!!

Anyways, it's cool to here some similar experiences. Stick it to the man.

Last edited by gimphockey56; 11-30-2008 at 09:10 PM.

 
Old 12-01-2008, 08:56 PM   #15
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Re: I am new have questions, need insights, what is your life like?

Quote:
Originally Posted by gimphockey56 View Post
It's funny to me how similar your story is to my own.

I was diagnosed with CP, spastic diplegia, when I was three years old and not walking yet.

While I do not have a weak trunk (I don't think), I too had a heel cord and hamstring lengthening when I was about eight years old. I also refused to wear the braces and haven't done physical therapy since about 3rd grade.

As far as my life, I would say it is mostly normal. I have a really close group of about 5 friends and have many other friends. I believe my CP actually has equipped me with better social skills than many other people who have not had to overcome adversity.

I try to walk as much as possible, but I rely on a wheelchair much of the time because of the discomfort of walking. I recently have began walking on the outside of my right foot and inside of my left foot. However, I enjoy playing street hockey and football, and recently have learned to drive a car with a manual transmission, which was exciting for me!

Dating life? What dating life? I've been on two dates (three if you want to count the blind date bust) and nothing came out of either, although one of the girls was interested. But that's pretty much it - I hate to say it, but sometimes it feels like a first impression is made on the disability, which pretty much cripples (pun intended ) my chances with any girls.

Still, I have a good attitude most of the time about my disability, and am always told my my good friends the right girl will come along eventually. Well she sure is taking her time!!

Anyways, it's cool to here some similar experiences. Stick it to the man.
Pretty much cripples your chances... that was classic man, I laughed out loud... That's awesome, no man is greater advantaged than the man who has the strength and humility to laugh at himself. You are a cool cat.

 
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