When I read about Spastic Cerebral Palsy (CP), I see terms in articles like “neuro-motor abnormality”. When I see these terms, I want to have a lengthy conversation with the writer about re-conceptualizing how CP or any disability is presented.
I don’t see enough research or hear sufficient conversation about the causes, onset, and prevention of secondary conditions. It has taken me over 40 years to gain an understanding about CP and the way I move. I had to read textbooks and study aspects of Spastic Cerebral Palsy to more fully understand concepts like an overuse injury and how my normal patterns of movement were likely causing the injury.
By the time I was 10 years old, I had three surgeries to correct orthopedic deformities that would have impeded my long-term mobility and ability to walk. I learned to walk by using support devices; first crutches and then canes. My parents and I dealt with physicians, physical therapists, surgical procedures, and continuous physical therapy to develop improved mobility through a series of stretching exercises and repetition of movement patterns.
In my 20’s, I was in charge of how I would manage my CP. I would go to the routine Doctor’s visits and was instructed about what I needed to do keep myself flexible and preserve my long-term mobility. However, I did not perform the recommended exercise routines. I had to experience mobility decline to start to follow through with stretching and other exercises.
I had to experience the loss of mobility and function to truly understand the amount of work and commitment that it takes to preserve long-term mobility. I had to experience the consequences of my choices.
A person reading this might ask, “Why didn’t Kerry just exercise?” The answer to this question has many responses. I didn’t like exercise, I didn’t want to exercise, I was a bit idle, and I did not think the consequences from a lack of exercise would happen.
In my 20’s, I used a motorized scooter to navigate around a big college campus. I also continued to use two canes as mobility devices, but got a bit lax because it was a lot faster and easier to sit on a scooter seat and arrive at my destination in 5 minutes compared to 15 minutes if I walked. Using the motor scooter made it easier to get from one place to another and it also was the most convenient option. I did not see or pay attention to the impact and consequences of my immediate choices.
The result was a significant decline in mobility and an increase in stiffness. I had to take action to counter these elements. The “action plan” included physical therapy and swimming at least 3 times a week.
My journey with exercise has been variable. There are times when I stick to a very rigid routine and other times when I do very little. During the times when I do not exercise, it is often because I lack the impetus, energy, or motivation to exercise; I may be lacking the physical ability to perform the exercise, or I may be experiencing fatigue. Mobility decline is often the biggest factor and motivation for me to carry out the range of exercises that I have been instructed to do.
In my 30’s, I discovered the challenge and onset of secondary conditions. Examples of secondary conditions include weight gain, pain, and fatigue. Literature identifies secondary conditions as “a medical condition or conditions that stems directly or indirectly from a primary disability.” i
One article I read, said “there is a general lack of understanding of secondary conditions for people with disabilities. This lack of understanding includes the onset of secondary conditions, the progression and severity of the condition, and further how to prevent it.” ii
I have experienced this lack of understanding about secondary conditions first hand. In my 30’s, I started to develop pain in my arms, shoulders, and back. The origin of the pain was not clear. My Doctors attributed the pain to Repetitive Stress Injury (RSI) or overuse of my shoulders, arms, and back to move. Strategies to prevent overuse injuries include basic elements of exercise such as strengthening and stretching.
By the age of 30, I learned I really had to direct my own course when it came to the treatment and management of my CP. I had to actively seek and gain the support of physicians and other health professionals, to develop a team of people who knew me and also had specific knowledge of Neurology, Orthopedics, Joints, and Kinesiology (Human Movement) to help me
create, actively engage in, and maintain my long-term mobility goals. My goals include prevention of injury and protection of my long-term mobility.
Over four decades, I was instructed about exercise routines that I needed to do. I did not understand why I needed to do the exercises or ignored the importance and purpose of the exercises. It was not until I experienced RSI and other secondary conditions that I started to wholeheartedly engage in prevention.
People with disabilities, physicians, and other health care providers need to partner and collaborate in prevention. People like me need to be engaged early (e.g. before middle school) and be taught to:
1. Understand the complexities of their disability;
2. Understand the concepts of prevention; and
3. Actively engage and carry out practical prevention strategies to thwart the later onset of RSI and other secondary conditions.
Health professionals including physicians, physical therapists, and other fitness providers also need to understand and address factions like lost impetus, lack of energy, motivation and fatigue. True prevention of secondary conditions needs to include teaching and engaging youth and adults with Spastic CP and other disabilities in exercise, healthy eating, and general health promotion.
i. Rimmer, J. H., Chen, M.-D., & Hsieh, K. (2011, December). A conceptual model for identifying, preventing, and managing secondary conditions in people with disabilities. Physical Therapy, 91(12), 1728+.
ii. Rimmer, J. H., Chen, M.-D., & Hsieh, K. (2011, December). A conceptual model for identifying, preventing, and managing secondary conditions in people with disabilities. Physical Therapy, 91(12), 1728+.