Advice for a 16 Year Old? - Cerebral Palsy Message Board

vermontcp · 05-05-2009, 08:44 PM

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.

ozfan79 · 05-07-2009, 05:24 PM

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!

open_the_door · 05-07-2009, 11:31 PM

Quote:

Originally Posted by vermontcp

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.

vermontcp · 05-09-2009, 09:46 PM

Quote:

Originally Posted by open_the_door

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.

Malwm01 · 05-16-2009, 08:52 PM

Quote:

Originally Posted by vermontcp

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.