In the older child, teen or adult with established body habits, the first step is to restore alignment. In many, this can be accomplished in a few days of intensive work. The first 2 photos show the change in a 16 year old with Spastic Diplegia over 5 days.
The change in his body posture is obvious. Why can it be done so quickly? The key is to understand why the habit persists. From the child’s perspective, the way their body moves is their “normal”. To change, they have to become aware of what normal looks and feels like in their body. Most are too weak to maintain the change in body position and need supportive garments and practice. This is the alignment and awareness piece. Once they are supported in good alignment, they have learn to recruit and strengthen new muscle groups.
But it is hard to work to a goal without knowing what the goal is. “walking normally” doesn’t mean anything to a child with an established maladaptive habit.
Their abnormal walk feels “normal” to them. Mason became motivated for change when he could experience standing and walking a different way and look at his before and after photos.
In his mother’s words, “Mason’s posture improved, he was able to rely on his legs vs. his canes to walk, he disclosed “I have control over my body” on day 2 and we were all able to see how certain strengthening exercises help with certain functions and why. The therapists were able to get him to understand that what he does and doesn’t do will impact his life. He became more responsible, and willing as he saw results and saw the potential to accomplish more with harder work. We saw results on the first day and by the end of the week we are absolutely thrilled and ready to go home and take the “train like an athlete” program on! Exhilarating!
“Mason went home and continued his training with a personal trainer as recommended during his intensive at Step By Step Therapy Center. He had realized what was possible and a year later his is fit, happy and he has made incredible changes in his mobility.”
At the start, Mason scored as at GMFCS Level III. A year later he is at Level II and moving towards a Level 1. This amount of change took a lot of hard work, but the results are worth it. Experts who say that child or teenager has plateaued and needs no more therapy are wrong.
Mason outgrew the therapy offered by the local rehabilitation center, but thrived with the help of an experienced personal trainer.
Pia Stampe, PT offers short-term intensives at Step By Step Therapy Center in Rochester New York. You can read more about Mason and other children and adults at https://www.sbstherapycenter.com on the results and testimonial pages.
In The Boy Who Could Run, But Not Walk, Chapters 13 and 14 give more examples of late change with stories of hard work and great results. My book is available at fine bookstores and Amazon. Canada https://www.amazon.ca/Boy-Could-Walk-Understanding-Neuroplasticity/dp/1988025052
USA and International https://www.amazon.com/Boy-Could-Walk-Understanding-Neuroplasticity/dp/1988025052
Mason is an amazing young man, nothing he does surprises me, he has such an inner strength..
My name is David, I am 52 years old and have CP from birth. I have had all the surgeries from hamstring reductions to abducter releases, in and out of hospitals my entire childhood. Nothing ever seemed to work, I would get my hopes up just to have them dashed again and again after a long and tiring battle through PT. I have learned to walk over and over again and each time was harder and longer than the last. I have had 11 surgeries as a child and as an adult my whole life has been one surgery after another. It all started when my left hip started hurting real bad and would just give out, making me fall flat on my face no matter what I was doing or where I was at. I was 18 years old and working in my fathers garage removing and replacing transmissions from cars. At 28 I was in my second marriage and working in a nail factory when it got to the point I could hardly get out of bed anymore. I went to the Dr. and found out my hip joint was completely destroyed by arthritis. I continued to work a construction job building gas stations for another 10 years where I made a good living as a pump and tank foreman untill I could no longer tolerate the pain. My wife talked me into applying for disability and within a year I was receiving a disibility check. I had my left hip replaced and it would not heal because of my spasticity. After a year of awful pain I found out about a baclofen pump and had it implanted so that when I had my hip revision surgery it would have a better chance at success. I then had my revision surgery on my left hip and after 6 months it still wasnt any better the pain was terrible. I walked on it the whole time with a walker it just would not stop hurting. Found out that it was micro movement associated again with my CP. Had to have a allograft of my left femur and they tied the bone with steel wire to secure the stem. Then just as I started to get around a little better my right hip went out. I have had it replaced and had to have botox injections because of the tightness from my CP would not allow me to even straighten my leg out. After all this now I am so weak in my core, it is a job just to sit up. All mt muscles hurt, both my knees are bone on bone and if that isn’t enough, I am getting arthritis in my hands and my neck so bad that I can barley turn my head some days. Getting dressed is becoming a chore and I have always been independent. The doctors told my parents that I would never drive a car and that I probably would be in a wheelchair by the time I turned 18. I don’t know where this is going to end but I am proof that you don’t ever EVER give up. For the first time in my life I am contemplating getting an electric scooter just so I can enjoy going to outings with my family, zoos, car shows, ball games etc. If anyone reading this has ever been told that you can’t, TRUST ME, YOU CAN!
Thank you for writing your story David. It is amazing what you have accomplished.I think your idea to add a scooter is quite reasonable.It will give you mobility without further damaging your joints.At this point, it is not a CP thing…people with bad arthritis use them all the time. Re your core strength, you might consider the available core compression garments like https://www.alignmed.com/ These are widely used by both athletes and people with various neurological problems like CP.