Erik is a healthy 48 year old with spastic diplegia, a type of cerebral palsy that primarily affects his legs. The following is his story of dramatic change in just 3 days.
Cerebral palsy was a central part of my childhood. My parents were great advocates and insisted that I have surgeries, therapy and treatments like patterning. But after high school, CP was no longer as central to my life. I launched a career, got married and had kids without ever spending much time treating or thinking about my CP.
But things kept happening with my body that I didn’t like, things that I knew were related to CP. My knee was occasionally very painful for weeks at a time and would sometimes give out on me. My hip would spasm or my back would seize up. Being in crowds or around small children or animals made me nervous, as quick movements in my vicinity would upset my balance and sometimes make me fall. I fell in public more often than I wanted, and I hated the stares and even the kind questions from people wanting to help. I had the discouraging feeling that a lot of people never saw past my disability.
I worked out regularly and I had a demanding job. But when I sought help for injuries doctors seemed to look only at the body part that was bothering me and never at how my body worked as a whole. I occasionally saw a physical therapist and got massages, and Pilates helped a lot. Twice I called the cerebral palsy clinic at the children’s hospital where I live, but I was told they don’t see adult patients. I knew I needed something more, but I had no idea where to find it.
The professionals I saw talked about managing my symptoms, but no one ever suggested that I could vastly improve the way my body worked and alleviate many of the symptoms of CP. I was left with the impression that things would slowly get worse, despite my efforts to stay in good shape. Last year my back spasms were so bad that I would collapse and spend days in bed. A doctor I saw said that decades of tight muscles and a choppy gait had taken a toll on my body and I could expect problems like this to start occurring more often.
I couldn’t accept that prognosis. I am 48. My wife and I have plans to travel after our kids are grown. I want an active, healthy retirement. I plan to exercise and work for many years to come. My wife went online to look for ideas and came across Karen Pape’s website. (www.karenpapemd.com) It was the first time either of us had ever heard the idea that the movements associated with CP were habits and that new habits could be learned, even for a middle-aged adult. (see Karen’s Tedx Talk)
A life-changing three days
A few months later we spent a long weekend with Pia Stampe, a physical therapist Karen recommended, for a three-day, life-changing intensive session. Pia was the first person who seemed to look at my body as a whole and could explain how, for instance, tightness in my pelvis cascaded into difficulty with my gait and pain in different parts of my body. Unlike most appointments that might last 15 minutes, I met with Pia three times for three hours each day. The schedule allowed Pia to really assess my condition and create a tailor-made recovery program that addressed my specific challenges.
After a thorough assessment, Pia began to work on me. I wish everyone could experience the feeling I had on the mat when, within a relatively short period, my legs and pelvis were put in a more relaxed position than they have ever been. It was a euphoric relief, and it felt like a hardened crust being removed from my body. Each long breath in a darkened quiet room, with Pia’s firm and gentle hands rocking my muscles as if I was an infant, brought on a wave of relief. While I knew I had very spastic muscles, I never knew that a slow and systematic rocking of the muscles could prepare me minutes later to stand straighter than I ever have.
The release was more than just in my tight muscles though. The release was letting go of the years of frustration and coping. The moments as a child when I worked so hard to be included in many activities. It was the release of feelings about the frozen stares from strangers trying to figure out what must be wrong with me. The embarrassment of falling in public places and not wanting the attention from those who kindly offer help. The memories of frustrating trips to doctors as a kid when I was told to come back later when they could do surgery. It was all there leaking out from my body and into the mat.
Then the tears of emotion came. The emotion of the love for my wife who recognized that the piecemeal approach to my healthcare wasn’t going to be good enough for me or for her. There were tears of joy knowing that I can have some say in the quality of life moving forward.
We worked on gait training and created a long-term plan to build on our initial accomplishments, a plan that includes heat, stretching, gym and water exercises. We have a long-term goal of using Botox and taking advantage of lessened spasticity to strengthen my muscles.
I am grateful for having the discipline of fitness for my entire adult life. Now, my fitness and my activities are done with greater purpose. Each day brings a little reminder of how things are different, like how my feet now sound different hitting the floor. Friends and colleagues say already that I look taller, and I have a looseness that I’ve never had before. My body and mind are ready for the work, and I am eager to see how much progress I can make.
You may contact Erik directly firstname.lastname@example.org or by writing a comment below.
Pia Stampe, PT may be reached at http://www.sbstherapycenter.com/index.html She will also see motivated adults for assessment and treatment planning. You can write Pia directly at email@example.com