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Old 05-05-2009, 07:44 PM   #1
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Advice for a 16 Year Old?

Our son is a junior in high school. He has a moderate case of spastic dyplegia and walks on crutches. As a child he wore AFOs on his feet, but hasn't needed footbraces since he had his hamstrings lengthened two years ago. He gets along well and can walk a mile or two at a time. My biggest worry is that his CP might be causing extra wear and tear on his joints, particularly in his feet and legs. I am writing to ask adults with CP what they knew, or wished they had known, at his age to help to protect their mobility throughout their lives. (e.g. Is exercise helpful or hurtful?) Thanks for any advice you can give.

 
Old 05-07-2009, 04:24 PM   #2
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Re: Advice for a 16 Year Old?

I am almost 30, and I have a mild case of CP. I can walk without crutches. My advice for your son is to do stretching exercises regularly. I did not do mine as much as I should have when I was his age. I don't know if that affects anything directly, but I have noticed that I have started to lose my mobility over the last two years. I can still walk unaided, but I have been falling a lot more. I know my joints are starting to break down. My knees, hips and ankles crackle and pop all the time when I am walking.

I am still hanging in there though. I am going to enjoy my mobility as much as possible while I still can!

Good luck to your son!

 
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Old 05-07-2009, 10:31 PM   #3
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open_the_door HB User
Re: Advice for a 16 Year Old?

Quote:
Originally Posted by vermontcp View Post
Our son is a junior in high school. He has a moderate case of spastic dyplegia and walks on crutches. As a child he wore AFOs on his feet, but hasn't needed footbraces since he had his hamstrings lengthened two years ago. He gets along well and can walk a mile or two at a time. My biggest worry is that his CP might be causing extra wear and tear on his joints, particularly in his feet and legs. I am writing to ask adults with CP what they knew, or wished they had known, at his age to help to protect their mobility throughout their lives. (e.g. Is exercise helpful or hurtful?) Thanks for any advice you can give.
How long has your son been using the crutches? My boy used the walker until he was about 3 and a half. My son has cp dyplegia too.

 
Old 05-09-2009, 08:46 PM   #4
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Re: Advice for a 16 Year Old?

Quote:
Originally Posted by open_the_door View Post
How long has your son been using the crutches? My boy used the walker until he was about 3 and a half. My son has cp dyplegia too.
My son used a walker until second grade and has been on crutches since then. He had AFO foot braces until he was 14, when he had surgery to lengthen his hamstrings. After that surgery his heels were flat on the ground and he didn't need AFOs anymore.

 
Old 05-16-2009, 07:52 PM   #5
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Re: Advice for a 16 Year Old?

Quote:
Originally Posted by vermontcp View Post
Our son is a junior in high school. He has a moderate case of spastic dyplegia and walks on crutches. As a child he wore AFOs on his feet, but hasn't needed footbraces since he had his hamstrings lengthened two years ago. He gets along well and can walk a mile or two at a time. My biggest worry is that his CP might be causing extra wear and tear on his joints, particularly in his feet and legs. I am writing to ask adults with CP what they knew, or wished they had known, at his age to help to protect their mobility throughout their lives. (e.g. Is exercise helpful or hurtful?) Thanks for any advice you can give.
I've walked without crutches and afos since I was 9. When I was 15 PT was discontinued because everyone said there would be no more improvement. When I was 16 I could walk about about that (1-2 mi) taking a break half way through. Now I'm soon to be 26 and I can walk about a mile but I'm done for the day after that.

IMO, there is a connection between exercise and ability. There is also a very fine line between exercise and overdoing it and it's very easy to cross.

Also, a lot of people choose to give up walking because it does sometimes for some people get really difficult. Even as early as college age.

I don't remember the date (it's on this forum somewhere) but a few years ago I got a treadmill and would walk very slowly a few miles a week and after combining that with daily pilates and swimming (in the summer) I gained a LOT of energy and unless I was having a lot of pain I got to the point where I could walk for 4-6 hours (nature trails, zoo, mall, etc.) Over the last 3 years my treadmill has become a storage area and I couldn't tell you the last time I popped in a pilates DVD and it's been 5 years since I swam daily and it SHOWS I have NO energy or stamina and I fall ALL the time.

I also think that anyone that CP that walks does harm (sometimes serious) to their joints and we do get arthritis earlier, and we put stress on our skeletons that they weren't designed to take with our irregular gaits.

Something else that is a big problem for me that I get from having CP and walking is that my right foot and toes often get bloodied and rubbed raw from shoes. My toes overlap and the pressure often causes small sores where they do. (This is only something that happened after I stopped wearing afos.) If I wear the same shoe for more than a few days they also start to rub on my heel or anywhere really and then it takes FOREVER for them to heal.

Sorry if this is a bit jumbled... I've had a long day! I hope it helps.

Last edited by Malwm01; 05-16-2009 at 08:10 PM.

 
Old 05-17-2009, 10:35 PM   #6
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Re: Advice for a 16 Year Old?

Quote:
Originally Posted by Malwm01 View Post
I've walked without crutches and afos since I was 9. When I was 15 PT was discontinued because everyone said there would be no more improvement. When I was 16 I could walk about about that (1-2 mi) taking a break half way through. Now I'm soon to be 26 and I can walk about a mile but I'm done for the day after that.

IMO, there is a connection between exercise and ability. There is also a very fine line between exercise and overdoing it and it's very easy to cross.

Also, a lot of people choose to give up walking because it does sometimes for some people get really difficult. Even as early as college age.

I don't remember the date (it's on this forum somewhere) but a few years ago I got a treadmill and would walk very slowly a few miles a week and after combining that with daily pilates and swimming (in the summer) I gained a LOT of energy and unless I was having a lot of pain I got to the point where I could walk for 4-6 hours (nature trails, zoo, mall, etc.) Over the last 3 years my treadmill has become a storage area and I couldn't tell you the last time I popped in a pilates DVD and it's been 5 years since I swam daily and it SHOWS I have NO energy or stamina and I fall ALL the time.

I also think that anyone that CP that walks does harm (sometimes serious) to their joints and we do get arthritis earlier, and we put stress on our skeletons that they weren't designed to take with our irregular gaits.

Something else that is a big problem for me that I get from having CP and walking is that my right foot and toes often get bloodied and rubbed raw from shoes. My toes overlap and the pressure often causes small sores where they do. (This is only something that happened after I stopped wearing afos.) If I wear the same shoe for more than a few days they also start to rub on my heel or anywhere really and then it takes FOREVER for them to heal.

Sorry if this is a bit jumbled... I've had a long day! I hope it helps.
To be honest, your message here really depresses me. We work so hard with our boy that has CP diplegia, and I feel like maybe we shouldn't. If the outcome is like yours, then why should we work so hard if it will hurt his joints and he'll get arthritis anyway. It sucks that my child has CP. I've had a bad day, and I see him struggling, and I hate it. I needed to vent....

 
Old 05-27-2009, 03:07 PM   #7
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Re: Advice for a 16 Year Old?

Quote:
Originally Posted by open_the_door View Post
To be honest, your message here really depresses me. We work so hard with our boy that has CP diplegia, and I feel like maybe we shouldn't. If the outcome is like yours, then why should we work so hard if it will hurt his joints and he'll get arthritis anyway. It sucks that my child has CP. I've had a bad day, and I see him struggling, and I hate it. I needed to vent....
I'm sorry to have sounded like a regular Debbie Downer. CP isn't the end of the world, and I'm sure not everyone's experiences will be what I mentioned.

* Instructions for locating blog, and blog information, removed by hb-mod, moderator *

Last edited by hb-mod; 05-27-2009 at 03:47 PM. Reason: Please do not suggest internet searches or post anything about blogs, per Posting Policy.

 
Old 05-27-2009, 07:35 PM   #8
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Re: Advice for a 16 Year Old?

Quote:
Originally Posted by Malwm01 View Post
I'm sorry to have sounded like a regular Debbie Downer. CP isn't the end of the world, and I'm sure not everyone's experiences will be what I mentioned.

* Instructions for locating blog, and blog information, removed by hb-mod, moderator *
I'm glad that you wrote back. You are right, CP isn't the end of the world. I wished that I could switch places with my child. I really do. I know though(therapists always tell me this), as long as you do daily stretching, and exercise, and keep on a healthy weight, one can conquer CP. It is what it is, and one has to put extra effort into walking, climbing, lifting things, I could go on and on and on. You know that. We(people without CP)really take things for granted. It is so easy to bend down, and twist and turn, and carry things without thinking about it. I always talk to my son about his body. His left side and right side, when to left one leg or the other. He has gotten so good, that he will spontaneously do things that he never could do before. It is from repeating things, and he is very in tune with his body. That is another key for him and why he is so successful right now.

We do stretching everyday, wear AFO's, nightboots at night, we alternate with knee immoblizers. IT is crazy, but it has to be done while he is still young. I hope he always continues to want his stretches, and to exercise. I know when children become teenagers, they want to do their own thing. We'll see. Thanks......

 
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