Saturday, February 05, 2011

Question for Adults living with CP

We started Anat Baniel Method therapy with Avery last summer because her physical progress had seemed to plateau with just the traditional PT. We started seeing wonderful developments within the first few sessions. Her traditional therapists and doctors have had a hard time with our decision to pursue ABM, particularly because it has meant that we are taking a step back on the whole walking front, and are not being so aggressive in our insistence that she get up on her feet and walk. The reason for this is that she needs to "unlearn" the damaging gait (heels off the floor, walking on the inside of her feet, knees together.) that she has been forced into, so that she can then learn how to walk in a more comfortable and natural way.
I do not personally know many adults with CP, but of the three I do know, all three of them learned how to walk as children with the help of well-meaning therapists and doctors. One of them lost the ability to walk in her thirties when it was discovered that her gait had caused bone spurs to develop in her spine which almost left her quadriplegic. As it is, she has a titanium rod in her spinal column and she will never be able to walk at all again. My husband's high school friend also grew up with CP and walked, but is also now in a wheelchair full time. A new friend introduced herself to me through my blog this weekend, expressing her concern about Avery's school PT's insistence that she should be walking even though her gait is so harmful. She is 26 and has already got to the point that her gait has made walking extremely painful. The fact that 100% of the adults living with CP who I know personally have lost the ability to walk has me more than a little concerned. I am beginning to wonder whether the well-intentioned emphasis on forcing CP children walk as soon as possible might actually cause more harm than good in the long term.
If you are an adult living with spastic diplegic cerebral palsy, I was hoping that maybe you could share a little of your experience with me.
  • Did you learn to walk as a child through some combination of traditional physical therapy, orthotics, intensive stretching, botox, valium, baclofen, walkers, etc, etc, etc? 
  • Are you still walking today? 
  • Does it hurt to walk more as you get older, or not? 
  • If you have partially or completely lost the ability to walk, when did this happen, and what was the cause?
If you don't want to comment publicly, please send me an email at josephineart@gmail.com.
Thanks so much!

UPDATE (Sep 2012) - Thank you to those of you who have taken the time to respond!! I appreciate it so much, and will continue to appreciate any future responses, so please take the time to share if you can! Thank you <3 p="p">

5 comments:

Kristen said...

That is very smart and insightful and a very good questions. Makes a person wonder if the world of PT schooling will be changed in this area someday.

mister_nash said...

Hi,
I Have C.p affecting The Left Side of My Body, Both Arm and Leg and i have Just recently Turned 21, I started Physio young and was forced to learn to walk young as well with the aid of therapists and leg correctional braces and casts that over time with constant stretching exercises help me straighten the leg.
my c.p is quite mild, however i know of more than a few people with c.p who are older and still mobile.
and with medical techology and an understanding of c.p far more advanced than it was 30 years ago i think Averys Chances of continued mobility are better than those of current adults with c.p would have had.
i think the term "force to walk" is the wrong phrase to use, i used to hate the painful physio and exercises but in the long run i'm glad i went through it all.

that being said, i no longer go to physio but i have to constantly keep up the stretching exercises and if i get lazy and stop doing them only then does walking become painful.

hope that was somewhat helpful,

Any Questions at all Feel free to ask,

Regards,
Dean.

courtney said...

Hi
My name is Courtney, I;m 27 and have spastic diplegia affected both of my legs. I have been in walkers, wheelchairs and crutches all of my life off and on. I have not lost the ability to walk and I had the forced walking and gait training. The problem with mine was I had a spinal rhizotomy (sorry to this day I cannot spell that word to safe my life) at the age of 3 and the docs cut all the spastic nerves so that my legs were not as still as boards. Then as I got older my gait changed and they did tibia and fibia alinements, shortly following where screw placements in my ankle sockets to prevent my ankles from going outward and Achilles tendon lengthening on both legs. 10 years later as you know with CP spasticity can play havoc and my tendon where tight again and they re lengthened them and took out the screws and fused my ankles together. I can now only move my ankles up and down and not side to side.
so as your child grows their gate will change as the joints that are affected change due to wear.

if you need anything dont hesitate to ask.

Anonymous said...

Hi,

I do not know if you are still checking comments on this post, but I just found it. I have had diplegic spastic CP since birth. I do not remember learning to walk, but I remember still crawling when I was about three. My mother told me I started walking at about four years old, shortly after I was diagnosed with CP. I walked on my toes and had a scissor gait. I had an achilles lengthening at age seven, after the surgery, they put me in a cast from the waist down both legs with a bar between the feet to try to stretch the muscles. That did not help, but they prescribed full leg braces with a bar between the feet that I was supposed to wear at night. They were awful and my mother did not always make me wear them.

The best thing I did as a child was water therapy. I have to swim in a heated pool. I did water therapy with a retired PT from age eight to age twelve. We never told the doctors that I was not using the night braces. The swimming and water therapy helped so much that the doctors said I did not need the night braces any longer.

At 15 I had a bi-lateral intertrocanteric osteotomy, where they cut and rotated my trocanter bones out to correct the scissors gait. That worked for some years, but over time, my muscles pulled the knees back in.

Walking caused me pain in my twneties, after I had my daughter. I used to get aspirin with codeine from Canada. I stopped using that when I got pregnant with my son. Walking got more and more painful. When I went to an orthopedist, she prescribed forearm crutches and Motrin (I was 27). I quit the Motrin after several years because I was worried about long term side effects. After about nine years of walking with the crutches, I started having problems with my hands and arms. At age 36 I got an electric scooter. I use that outside, and I use a manual wheelchair at home. Walking with the crutches causes a lot of pain in both my arms and legs.

I have done strength training to help with walking. It imporves my gait and easy of walking, but it does not help with the pain in my arms from the crutches.

Using a variety of mobility devices has allowed me to accomplished quite a lot. I have two kids, three grandkids, a doctorate from Harvard, and I teach at top tier liberal arts college. MY mother, God rest her soul was an awesome advocate for me when I was little.

Anonymous said...

Wow, all these are inspiring stories. I'm 33 and have spastic diplegia. I had Achilles lengthening at 6 years old. I had femur/hip rotation at age 7, and continued with PT through the age of 10. I have never lost the ability to walk, however, there is increased pain in my hips and ankles. I really didnt know I had CP because my parents did not speak english and did not know how to explain it. I am thankful for them not treating me differently, as I now have 2 healthy boys, a great husband and a job helping patients with chronic illness. Everything happens for a reason!