Stepping in the Right Direction: The Development of a Functional Walking Program

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By Kerry Wiley, Kyle Jenks, and Troy Valberg

This copyrighted article is reproduced from the National Center on Physical Activity and Disability at www.ncpad.org

“Give Me the Shot”– Kerry’s Perspective

For me, the presence of stiffness and rigidity in my legs has always been a fact that just has to be dealt with and adapted to throughout my life. Like most people living with some form of a disability, my mantra is: “Give me the shot, let me try to see what I can accomplish.” Spastic cerebral palsy (CP) is the diagnostic term used to describe my challenges with movement, balance, coordination, flexibility, and gait. In 2006, I began a journey to improve my walking that would change how I perceive physical and personal limits, my vision of who I could be, and would ultimately change my views about what is possible.

This first picture was of a woman who walked with canes or crutches. The walking devices intended to support me were causing pain in my upper body. I engaged skilled professionals to assist me to redefine what my future would be: living a pain-free lifestyle with improved mobility. The foundations of change began with Jason Berner and Heather Kenneally, fitness professionals engaged to guide and support critical lifestyle changes. Jason was responsible for the design of a structured exercise program which integrated nutrition, strength training and stretching, and customized swimming and functional movement routines.

Heather augmented the regimen with guided support in GYROTONIC® and specific exercise routines designed to enhance my range of motion and flexibility. Under the guidance of my physician and these fitness professionals, the core foundations of my function changed. I was learning the mechanics of movement and what I could do with it. I was learning the fundamental skills of using specific leg muscles to move and walk almost as if the label of CP did not exist. In spring 2009, Jason and Heather completed their work with me and I was introduced to two new fitness professionals, Kyle Jenks and Troy Valberg. During the transition between professionals, I was responsible for keeping my program intact. I had to perform the established exercises while also embracing new people and new approaches. I was fortunate that I had worked with Kyle on past occasions. The dynamic collaboration that is born from experiment and trial establishes a critical rapport and trust between the professional and client over time. This element is missed when staff transitions take place.

I had to create new partnerships with new professionals and had to create a new plan that would reach my goal of walking without canes, crutches, or other support devices. The established plan had to both respect the previous work and advance it. I had to learn Kyle’s and Troy’s respective working styles, find effective ways to share information without overwhelming them, and adapt to new techniques while trying to uphold a fidelity to strategies I knew worked.

In the first 90 days of working with my new team, I watched past and current efforts come together. My sense of self transformed at every progression. Kyle and Troy supported the advancement of a vision. Their predecessors illuminated the possibility of a different course related to my walking and management of CP and helped me to embrace it. In April 2009, I could not self-propel up a hill without walking devices. Every attempt I made resulted in my falling to the ground. When I felt equal weight on my feet and felt balance beyond fleeting moments, I knew changes were taking place. From the tentative steps on the uneven ground in April until just before I felt myself standing without external supports at the top of the hill, I became a different person. New ideas and possibilities were born. The collective vision with my new team began with enhancing function by developing strength and flexibility in my limbs and core. The transitional vision emerged from experimenting with exercises while standing.

Both Kyle and Troy, like their predecessors, have a “person-first” approach. They have the attitude that they are working with me, not on me. Both are knowledgeable about muscle function and functional movement. The challenge before us was how to meld the characteristics of CP to what they knew “normal” functioning to be. The partnership with Kyle and Troy has required a unique balance of respect and assertiveness. In one aspect, I am challenging perceptions of disability and filling in information about something that may be new to a specific repertoire of experience. I also have to defer to their technical knowledge about functional movement. In the beginning stages of the new partnership, I encouraged the adoption of a functional approach. I would do the work in place of Kyle or Troy manipulating my limbs or facilitating the exercise. Kyle or Troy might need to demonstrate a movement or pattern, quite similar to parents taking the hands of children to guide them as they are learning to stand and move.

Under the guidance of my physician and these professionals, the core foundations of my function changed again. I was learning the mechanics of functional movement and what I could do with it. Functional movement and exercise became the course to a pain-free lifestyle.

Supporting Change – Kyle’s Perspective

Functional exercise embraces the concept that muscles coordinate together to execute movement instead of training muscles individually. This type of training has been beneficial to Kerry because it directly contributes to improving her overall movement patterns. Use of this approach and my journey and contributions toward Kerry’s progress started in May 2009. I was admittedly challenged by her goal of ambulating pain-free without devices. I was afraid that her physical abilities would reach a certain level and then stop. Kerry has not stopped. She continues to make incremental progress in almost every session since our collaboration began. It quickly became apparent that she is an active contributor in the development and direction of her program. She is a strong self-reporter and pays attention to the sensations she detects in different areas of her body, whether it involves walking uphill, downhill, on a side hill, or balancing on uneven surfaces.

Open lines of communication between us are a key component to the progress we’ve seen. In addition, my colleague, Troy, and Kerry’s physician have been important contributors to Kerry’s advancement. Kerry extended complete faith and trust in us as her trainers when she signed consents for us to talk to her physician. A conversation with her doctor in June 2009 reaffirmed what we were striving for: a movement-based approach. For example, according to her physician, Kerry’s hip and knee strength needed improvement. Walking uphill and downhill accomplishes both of these objectives. Other modes that Kerry has used include a pool and self-stretches.

Kerry provides valuable feedback about what program elements need more or less emphasis. Each person on this team brings a different expertise and provides input into the program design and modification. For example, we experienced more success with upright posture exercises, including specific exercises that forced Kerry to balance without moving. Incremental progress is an important element of her program. Kerry’s work with my predecessors helped her establish a framework of ability through more basic methods of strength and flexibility development. We have expanded her program to focus on elements of balance, coordination, and functional movement. Although some of the functional exercises have been necessarily repetitive, the mix of the trainers’ unique backgrounds produced different exercise drills. We have compiled a list of these exercise drills. We have also placed more emphasis on documentation. Since Kerry is working with two of us and we each serve as “trainer for the day,” documentation is extremely important. Documentation includes information about specific exercise sequences that Kerry completes. In our session, I may work with Kerry on static balance. In a subsequent session, Troy may work on skills to maneuver a curb. When Kerry sees either of us, it is clear from the paperwork what the other trainer focused on. This, in combination with Kerry’s feedback about what she experienced post-workout, (i.e., fatigue, increased spasticity, or unanticipated pain) allows us to modify the session plan accordingly. Even the smallest of achievements can motivate the individual for the next challenge.

The next challenge is to successfully mix the functional movement drills with other exercises that provide a supporting role. This is where the team relies on some of the foundational work already performed by previous members of the team. Initiating independent walking function requires mobility of the spine, balance, coordination, and flexibility. A critical factor is to encourage the use of muscles and body parts that have never been used before. By reinforcing exercises that help the natural walking cycle, we have watched a progression from trainer- assisted exercises to a functional program using the existing environment, repeated drills, and guided instruction in which the client executes movement. We have worked to develop improved static balance, increased flexibility within the hips and knees, and to initiate automatic engagement of the developed skills simultaneously. One of the keys to improving these aspects of function was the repetition of new movement patterns in order to develop muscle memory. We are re-educating Kerry’s body to remember the activation of little-used muscles that are critical to developing a more successful walking pattern. Kerry continually sets more demanding goals and puts her trust in the individuals that have the privilege to work directly with her.

Supporting Change – Troy’s Perspective

When Kerry and I began working together, my experience with her disability was limited. I knew our work w ould be a challenge. My professional experience includes athletic strength and conditioning, kettlebells, strongman training, and other strength-training styles. When Kerry and I started to work together, I was able to make important connections with basic and successful principles of strength training and weightlifting and what I knew Kerry was trying to accomplish.

During our first training sessions, Kerry filled me in about her disability and its implications. She also communicated that one of her goals was to walk up and down a hill without any type of walking device. I came to understand that this was a challenge that remained unfinished for Kerry. She had not been able to master the skills in work with previous fitness professionals. My reaction was: “If you want to be able to walk up a hill, let’s go practice walking up a hill.” Kerry and I connected then. I knew that in the past she was used to having professionals attempt to correct functional issues and movement patterns with floor exercises, stretching, and isolating muscles. Our approach was going to be functional.

A 6-foot, 5-inch basketball player with long legs will probably not be as successful as a short, stocky football player when it comes to performing leg lifts or squats, but he can still be a strong and skilled basketball player. In Kerry’s case, we may never see her feet point straight ahead or her knees not bow in, and she may never be the picture of what some people may consider “normal,” but she can improve her walking skills. The goal is to try to get Kerry to engage and activate muscles and achieve the most movement and balance that she can. Kerry wants to move around the outside world device-free. This involves skills such as stepping on and off curbs and maneuvering uneven surfaces, so our training consists of getting outside and practicing these skills.

High school football players or any athletes beginning a strength and conditioning program need a qualified professional to teach and coach them on how to do every lift, whether it is an extremely technical lift such as a “power clean” or something seemingly as simple as a “bench press” (which actually has many technical fine points). A power-lifter is not born knowing how to do the lifts; in order to be successful at them and gain strength, a coach is needed to guide and support polishing of the lifter’s technique.

In Kerry’s program, we can’t just send her outside to try to walk up hills or step on and off curbs without instruction and expect her to accomplish it. Skills, like shifting weight from one leg to the other when stepping up and down and pitching forward when going up and downhill, need to be explained in detail and laid out in steps that Kerry can follow. Since Kerry has never fully developed these skills, we have to explain, demonstrate, and teach her the skills.

Anyone familiar with developing functional strength or athletic power, (not bodybuilding), knows training to failure is not good. Essentially, you are teaching your muscles, and yourself, that it is okay to fail. When Kerry is training to walk up an incline, I want to be there to catch her if she loses her balance so that she can continue up the hill rather than start over. If I cannot catch her in time, she will stand up and get moving again on her own.

Although training Kerry has been my first experience working one-on-one with someone with spastic CP, it has been a very rewarding journey. The most important message from this is to take a page from Kerry's book: “Never quit and keep striving for more.” Sometimes, professionals can make things too complex and get caught up in trying to “fix” something. When training people with or without a disability, work with what they have and help them to become as functional and efficient as they can during the session. If a challenge remains unconquered, there is always next week or the next session to give another solid effort.

The Culmination of Efforts – Kerry’s Perspective

In April 2009, I stood at the base of a hill, grappling with the challenge of how to climb the hill without walking devices. I was being stretched to make my best attempt to climb the hill. I attempted to climb, fell, and attempted to climb again. In those initial drills, I did not make it to the top. My trainer said, “The hill is not going anywhere. You will climb it; it will just be another day.” At the time, I did not have the functional skills I needed to go up the hill. The choice was presented: You will climb or you will not. I chose to climb.

The methods for conquering the hill included fostering the belief that I was capable of more, that I would climb the hill, and progress beyond that. Skilled trainers helped me to embrace this belief. I also had to learn functional skills to develop the balance, coordination, and leg function to ascend the hill. The outdoor environment became the tool for that development. The conquest of the hill represents the peak of a collaborative process, intensive work, collaboration, and effective coaching from a multi-disciplinary team.

At this point in time, I am like the child that has progressed from creeping to standing and I am in the process of learning to self-propel, and propel outside without walking devices. My initial work with Jason Berner and Heather Kenneally represents the beginning stages of growth and the potential of what I could do. My work with Kyle Jenks and Troy Valberg has helped me to advance that vision and overcome a fear that I did not even know I had. I had to learn that I was capable of standing and moving under my own power, without trainer assistance, and without any type of walking device in any environment. Through effective teaching and coaching, I learned and developed the awareness that I could walk better and could learn functional movement skills, and, as a result, I expected more. Since conquering the hill, my goals include learning to dance. The modality of dance will promote improved walking function and movement fluidity.

My program does not stop when the appointment with the trainer ends. CP will always present challenges. The challenges will change; the methods to conquer them will change. The constant that will remain is my drive for success. My team of trainers has caused me to look at my future from a perspective of unlimited possibility – from good, to better, to best. I will go after everything I have not yet experienced – be it standing on one foot, dancing, running, or jumping. There will be other “hills” and challenges to triumph over and I intend to conquer them all, walking and beyond.

Kerry Wiley and Jason Berner also co-authored an article titled "Taking Control of Your Health and Wellness: Taking Strides Toward a More Fulfilling Life," published in the May 2007 New York State Developmental Disabilities Planning Council e-bulletin.

The article details the development of a personal health and wellness program and outlines specific inclusive and collaborative strategies to promote improved health and wellness for individuals with disabilities and other health conditions.

March 2010

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