Discussions that mention botox

Cerebral Palsy board


Hi!

I am new to the forum and am interested in finding out more about SDR in older individuals that have CP

I have a very mild case of CP and otherwise lead a fairly normal life. The condition appears to affect only my lower extremities specifically: hamstrings, hips, quads and feet. I walk independently I have noticed however over the past 2 years I feel exhausted by the end of the day and having more difficulty walking for long periods of time and with stairs. Now that I am 39 I am really concerned what the next 5, 10, 20 years will be like given this level of trajectory.

I am very active and enjoy going to the gym to exercise. Since seeing Ortopaedic Drs in PA, I have more questions than I have answers right know and I am looking for different opinions / options. The Drs in PA would like to administer some form of “blockers” / botox in certain places and basically put me in braces for the rest of my life to limit “dorsi flexion” / foot slap. Supposedly since I have very weak calf muscles the whole leg breaks down and I walk slouched putting more stress on the hips and quads. Adding to this an overall tightness contributes to the fatigue. Again, the braces probably will allow me to walk better however, I am not sure of my alternatives. Their advise seems counter intuitive to what I know that is they would rather see me rest and not be so active. To me the muscles will only get weaker and range of motion diminished over time.

That said, SDR looks promising, however I would love to find out if anyone has actual experience with it long term
Hi,

Your CP sounds a lot like my son's. He lives a pretty normal life, but walks with crutches. He used to have Botox, but got off of that and out of footbraces when he had surgery to lengthen his hamstrings.
Just wanted to tell you that there are different ideas about exercise and CP. My son's physical therapist says that orthopedists used to think exercise put too much stress on people with CP. Now many of them think exercise really does a lot to keep people with CP strong and flexible. Maybe you should get another opinion.
You know your body better than anyone else, and you know what works for you. Trust yourself. Do whatever keeps you from tightening up. Good luck!