Help For Patients with Cerebral Palsy

How did you get involved with martial arts?

Dr. Brunstrom: I started taking self-defense to learn how to protect myself because a woman at a grocery store near where I lived was carjacked and there was a baby in the backseat. When a friend of mine told me about this, it scared me and at the time. My son was 3 or so, and all I could think about is: ‘What the heck would I do if I were me? I can’t run, can’t get away from people like that, and my child is in the backseat and how would I protect him?’ So, I called different martial arts studios to see if they would be willing to take me on. I got the same sort of runaround: ‘Well, we don’t know anything about CP and you can watch.’ I was told ‘You can watch. If there’s something you can do, fine, but we’re not going to slow the class down for you.’

A friend of mine hooked me up with a black belt who started teaching me. I learned how to protect myself and I learned enough to at least feel more confident, even from the very beginning. What I wasn’t expecting was to find a dramatic improvement in my self-confidence and my motor abilities. When I first started taking self-defense, I had to stand with my back against a wall, because the first time I threw a punch, I landed on the floor on my butt.

In about three months or so, I started to get better balance. When I was standing and doing stickwork for 10 or 15 minutes without falling down, I suddenly realized something had changed. It was about a year after I started taking self-defense that I started the cerebral palsy center at Children’s Hospital. I decided it would be a good idea to start the same thing for my kids.

What was the response from parents?

Dr. Brunstrom: At first, it was a lot of work to convince them to give this a try. Actually, I had to call people on the phone and practically beg them to just show up for the first class because they just kept thinking: ‘Oh yeah, karate for kids with CP. My kid can’t kick.’ They thought all the stuff that I thought, which is why I never even tried martial arts, but I learned how to defend myself. I begged and called and I begged some people like five or 10 times, and finally four kids and their parents showed up, not for the first class, but for the session where we were able to assess what their abilities were.

The very first group had to be sort of like me because the instructor wasn’t used to dealing with anyone with disabilities. After we let them punch a couple of things and they got excited, they all waited two hours to see if the instructor would teach the class. Not that day, but he originally said he wanted 10 students. So, they all waited and we kept saying, ‘You can leave.’ After two hours, we were getting ready to leave and one of the moms said, ‘So, are we having class or not?’ I said, ‘I don’t know.’ I looked in at him and he said, ‘Yeah, we’re having class.’ He couldn’t say no to them.

We started class the next week and in the interim, I contacted one more student, and they had five for the first class. At the end of the first six-week session, we got some media coverage and some more people interested, and by the second six-week session, we had doubled our class size.

What kind of difference have you seen in the kids?

Dr. Brunstrom: I’ve seen the same sorts of things that I saw in myself in these kids, although it seems like it’s magnified 10- or 100-fold because it’s watching them open their eyes about what they can do by themselves. I listen to them talking about their therapies and all of these other things, but sometimes you have to get them to believe themselves. It’s one thing to believe in yourself about your ability to think or something you’ve always been allowed to do because it’s easy, but it’s a whole other thing to believe in yourself about something you and other people think is impossible. Nobody thinks of cerebral palsy when they think of martial arts. Martial arts is about focus and motor control, and it’s the total opposite of cerebral palsy because when you have cerebral palsy, you can’t control your movements very well. To take a kid and have their hands like this or have them not be able to stand very well or they have a hard time throwing a punch, and watch them go from ‘I don’t know if I can do this’ to boxing or punching really fast or trying new things or learning how to kick or going through a form and then seeing their face light up because they’re so proud of themselves, it’s really great.

What is it, do you think, about the martial arts that is helping them in different ways than their traditional physical therapy doesn’t?

Dr. Brunstrom: I think it’s all about moving. It’s all about using your body. We have swimming, basketball, dance, martial arts, and it’s partly geared toward getting them moving. It’s also geared toward letting them have fun.

One of the things that’s really great about it is the staying power. Physical therapy doesn’t have a whole lot of staying power because, quite frankly, it’s not that much fun. You go, you have to do a certain set of exercises. Sometimes it’s very necessary. If you can give somebody a very specific goal and say, ‘This is why I want you to do these exercises, because this is the goal,’ you have a chance of at least getting them to hang around for six weeks, a couple of months, or if their parents are cracking the whip, they get dragged week after week whether they like it or not.

Then take something like dance, and you can get them to use some of these same muscle groups, or even use more muscle groups, because they get their minds off of ‘I have to learn to move my arm this way or reach out and touch that.’ Instead, they start thinking to the music and the dance instructor convinces them, the music itself actually helps turn on some stuff, but they imitate the dance instructor. Instead of her saying, ‘I want you to open this or close this or learn how to move this,’ she just says, ‘Follow me’ and they’re dancing.

Same with martial arts. The black belts, they know a lot more about CP than most people because they’ve worked with these kids for over three years, but they didn’t start out trained as physical therapists. They don’t approach it like a physical therapist, which is not necessarily a bad thing. Instead, they approach it like, ‘We want these kids to do the same things that everybody else is doing.’ Their bodies don’t move quite the same, so how to we get their bodies to do what we want?

What we find out is that these kids are learning techniques and learning things. Many of them are actually able to reduce the physical therapy they’re in, or even discontinue it for periods of time because they’re doing just as much if not more from doing sports.

The other big thing is if you wanted to go out and play sports or go to a gym or do things like that, you would get to do that. So, why wouldn’t I? Why shouldn’t these kids be able to do the same things? They learn that being human is about being healthy, not ‘You can only do this and this because you have CP.’

What do you think are probably some of the biggest misunderstandings about CP?

Dr. Brunstrom: I think the single biggest misconception about cerebral palsy is if you have cerebral palsy, there’s something wrong with who you are as a person, that you don’t think the same as other people, that you don’t have the same dreams or desires or goals as other people. All it means is you have trouble moving. That is the definition of cerebral palsy. You can have trouble learning, you can have trouble speaking, you can have other association problems — visual problems and everything else — but that’s not a given just because you have trouble moving. You can’t look at any person and make a judgment call on who they are just because of how they move. So, getting people like the black belts, who have never worked with people with disabilities before, to look at these kids and look at me like regular people, not forgetting that we have trouble moving, accepting that and working with it, but when they talk to us and treat us like people, they’re treating us like people. They make us do push-ups. They expect the same thing out of us that they expect out of their other students. They’re tough on us because they respect us. That is a huge deal and they have turned from four terrific instructors, which they were already, into four of my strongest allies as advocates for these kids. It also tells you, you don’t have to have a disability to be an advocate and an ally for kids. I’m very proud of the black belts.

Is that something that you have had to deal with your whole life, people treating you differently?

Dr. Brunstrom: Yeah. It’s still true that if I walk down the street in jeans and a sweatshirt and tennis shoes, nobody knows who I am. They tend to make a judgment call about me based on how I walk and more often than not, they tend to assume that I’m stupid or don’t think right before I’ve ever had a chance to open my mouth. Luckily, I’m very good at opening my mouth, so that I can change their perceptions. But, my goal is to teach these kids to do the same thing.

What gave you the strength to do this?

Dr. Brunstrom: I was born a fighter. The black belts have taught me strategy for how to fight, but they didn’t make me a fighter. I was born a fighter. So, that’s something that’s in me.

When did you decide that you wanted to go to medical school?

Dr. Brunstrom: I wanted to be a doctor since as early as I can remember. In fact, the only other thing I ever remember I wanted to do was be a country music singer, which I tell people all the time, but nobody says anything. Ever since I was 6 or younger, that’s all I wanted to be. There was never a question. When I was in high school I had to do this assignment as a senior in high school where we explored six different careers and I marched up to the teacher and said ‘That’s ridiculous because I’m going to be a doctor. I don’t need to pretend about other stuff.’ She’s like, ‘Do it anyway.’ The point is when I interviewed for medical school, they’re like ‘What if you don’t get in.’ I said, ‘There is no not getting in. I’m going to medical school. If I don’t get in this year, then I’ll be back. I’ll come back until you let me in.’ Luckily they let me in the first time.

Obviously, these people are coming to you because they are missing something somewhere else. What is it that you wish more doctors were doing so that you wouldn’t be the only one helping all these kids?

Dr. Brunstrom: The bottom line is what I do is not rocket science. It may seem like it to parents because they’ve gone to these other doctors and they’ve never heard this before, but what I do is I look at these kids the way that I want to be looked at. I look at them from top to bottom because someone has to. They come as a package, not that you have this contracture here so let’s send you to the orthopedic surgeon and you need this medicine for that. They have a whole list of problems and so what we need are doctors who, first of all, look at these kids based on what their expectations should be and not one what the doctor’s expectations of them are. Doctors tend to look at kids with CP and think about what they cannot do. I’m not interested in what they can’t do; I’m interested in what they can do and I’m here to tell you they can do a hell of a lot more than most of the world realizes.

What is your message to kids with CP who can’t come to you and have you say that to them?

Dr. Brunstrom: Find somebody who can. My big message to them is never give up on their dreams. For parents, it’s the same thing, to never give up on your dreams. What they learn to do is give up on their dreams. What they’re told to do from the very beginning is don’t hope for too much. You need to be realistic. Life will be a lot easier if you’re realistic. I don’t want to give you false hope. I don’t believe in false hope and I don’t believe in other people’s reality because they’re reality is wrong because it’s based on the wrong perceptions. They’re looking through a fuzzy glass and they’re basing their reality of these kids on what they see through this fuzzy glass. I’m trying to get rid of the fuzzy glass and make them look at the kid and ask, what are their goals? They are a real person. I’m not going to decide their goals for them. What are their goals? When you hear what their goals are and what their parents goals are, then you accept the fact that they have certain problems that get in the way and say, OK, give them this set of problems, give them these cards that have been dealt, how do we get to point B and their goals because that’s what matters. If they can find somebody, and they can’t give up. If they go to the first doctor and the first doctor says ‘Oh, you have to be realistic and you can’t do this,’ it’s time to find another doctor. The minute you find a doctor that says ‘You can’t do this,’ it’s time to find another doctor.

Talk about your conference.

Dr. Brunstrom: Because we have such a novel way of working with these kids and because we give so much hope to kids, we have a really long waiting list. The one thing that really hurts is to have to turn people away. So, in efforts to try to defer that stress, especially on me, because I really don’t like turning people away, and in efforts to help as many children as possible, we are hosting a national parent conference for parents of children who have cerebral palsy. It’s intended first and foremost for parents who are not currently served at the cerebral palsy center who are waiting and would like to get in and it’s a two-day conference where we go through and point by point all the issues that we look at in these kids to try to give these parents a strategy for how to tackle these issues even before they can come and see us and how they become advocates for themselves with their own doctors and say, ‘Look, I need to have this evaluated. I need you to check my child’s vision. I need you to make sure they can hear ok. They need to be evaluated for a communication device and all those kinds of things.

Source: Ivanhoe News