Hi, I'm Kristi and I'm so glad I found this site.
YAY. I'm 36 and have spastic hemiplegia which affects my right side. I have learned so much and have been pouring through the messages here. What a great resource! This is truly the first place I've found that really has information on what real adults go through who have CP.
Some things I've read have really hit a nerve with me and my symptoms that I never realized had to do with my CP (such as sleep issues) seem to be pretty common amongst folks here. Also similar experiences with doctors, family, strangers who just don't understand, even if they really want to. And then a lot of times wont accept my explanation of why I can't do whatever. Can you say frustration? And there are the people who a just downright mean or cruel or thoughtless. I once had an employee of a business ask me if I knew I had parked my car in a handicapped zone. Uh...DUH! I told her "Yep", and walked on by. Or the guy who yelled at me and said I wasn't handicapped and I didn't deserve the space. I was not as nice to him and told him to go screw himself, except not as nicely.
So thank you
to those of you who have shared your (or your children's) experiences and I hope to be able to share mine (even if it's just to vent!)
A couple things I guess I'll share now (and a semi-response to random posts):
Regarding capabilities versus reality: Ok, so my folks were and are fabulous parents and I couldn't have asked for better. My Pediatric Orthopedist was the greatest and I know he truly cared and had my best interests at heart (in fact, I used to visit him just to say hi, and he felt like family). Now, with that said, they all told me I could (fill in the blank here) if I just tried a little harder, pushed myself a little bit more, etc. Made me feel like a failure and a letdown when I couldn't (this I'm sure was all in my head), and as I got older I really resented them telling me I could do whatever when I knew I never could. I know they had my best interest at hear, but I was felt like I was never going to live up to expectations.
Also, the ramifications of living with CP was never really explained to me. As I got into my 20s I no longer had access to a Dr I trusted (and still don't) and I had no idea it was going to get worse till it did. I feel like I'm 60 many days. Now I see a Kinesioligist once a week and feel 10 years younger! I tried massage, but this is better! I highly recommend it to anyone who is contemplating it.
Although I went regularly to therapy and had tons of surgery, I felt like my life growing up was pretty normal, but it has begun to depress me lately. I have a feeling that I'm going to end up in a wheelchair and the things I seem to be able to handle physically have dwindled. I can barely clean my own house anymore! Well, there is really no barely about it, I need lots of help now. A couple years ago, my Dr told me I needed to stay off my feet (well, my right ankle) as much as possible and I was not allowed any weight-bearing exercise. Bike (ha!, this year I finally got a trike but it's too heavy to get up and down the hills in my area, so it sits in the shed till I can afford to have it motorized) Swim (which is my favorite, but I'd need a gym membership) and Yoga (which I do on occasion but I suck at it, the whole no balance and all) are the only exercise he permit me, and I've now gained 50 pounds, which I know is just about the worst thing for me and my self esteem.
Also, although my self-identity has always included CP, I have never really known anyone else with it since I was a young girl. I had a really good friend with CP when I was little, but anything else was just a passing encounter. So I guess it's nice but a little strange to be surround (figuratively, of course) with like people. I'm glad you are here! Anyhow, sorry this post got so long, but I guess I really needed to vent!
And really, I'm usually pretty upbeat, I swear!