Month: June 2019

My walking program has been built upon collaboration.  Collaboration is a dynamic, creative, and interconnected process.  From the beginning, I have combined approaches from a wide range of health, medical, rehabilitation, and fitness disciplines.  I have used methods from physical therapy, yoga, dance, and functional movement to support my overall fitness and walking efforts.

When I work with someone new, I know that I am likely one of their first clients with Spastic Cerebral Palsy, I am “geared up” to educate and dispel any potential misconceptions a professional might have about my disability.  Successful collaboration begins when I see a professional who is willing to engage in what may be unfamiliar.  I know the foundations of collaboration are present when I see a professional actively listening and planning. There is agreement about short-term and long-term goals.

My disability may present a new and exciting challenge, but generally, professionals who work with me want me to achieve success.  The professional is confident that they can support me.  They look for new and innovative ways to help me improve existing skills or to develop new ones. They engage in active problem-solving which leads to targeted strategies to improve my strength, flexibility, and other aspects of mobility.

The professionals I have worked with over many years understand the principles of person-centered support and care. Person centered care is based on the premise that each individual is unique, and that all care and programming should be based on each person’s strengths, interests, needs, and choices. [i]

Principles of person-centered care applied to my program include:
– Treating people with dignity and respect,
– Offering coordinated and personalized support, and
– Supporting people to recognize and develop their own strengths and abilities.

When I engage any professional to become a member of my medical, health, or fitness team, the initial step is to establish a rapport and build the groundwork for interdisciplinary collaboration. I define my goals as a client, share examples of exercises that have shown results, and share information that will demonstrate my current level of ability, and what I am working toward.  I emphasize why my walking goals are so important.  My mobility is the vital key that allows me to work, play, and navigate in my community.

-Interdisciplinary collaboration is an academic term which defines a process of how different professionals work together and forge agreements. This reference describes my experience, “Interdisciplinary collaboration crosses the boundaries of disciplines and professions and forms a team with an agenda of practical problem-solving. The established team has a mutual interest of creating new knowledge.” [ii]

-Effective interdisciplinary collaboration requires developing a common vocabulary and encouraging a relationship that results in active problem-solving between the client and professional.

I have learned how to engage all the professionals I work with in verbal problem-solving. I ask several questions during my exercise sessions or my (walking) training sessions. Examples of questions include: “What should happen during this exercise?” “What should I feel?” “Why?” “Where on my leg should I be feeling the effect of the exercise?”

The professionals working with me in turn have learned how to prompt me about where and when to expect a specific physical response. The dialogue and problem-solving helps me to bridge gaps that happen when typical approaches do not quite work out as expected — often due to spasticity, muscle fatigue, or other factors related to my disability.

-I also repeatedly share the vision I have about walking improvements. I share effective methods that have shown positive results. I similarly share what has not worked over time.

At its core, the unique program and model I have developed over twelve years, came out of the need to find personalized solutions that would not only preserve my mobility but improve it. It has brought together professionals from many backgrounds to build upon my goals, interests, and strengths.

When person-centered care and interdisciplinary collaboration are effectively applied, it promotes the use of community settings versus segregated settings. [iii] It “blends and merges expertise and knowledge from different disciplines to maximize creativity when addressing complex problems or difficulties.” [iv]

In my case, the principles of person-centered care and interdisciplinary collaboration have created a framework for achievement of my goals.  The principles have developed lasting relationships, fostered ongoing teamwork, and developed a shared goal and vision for Wiley’s Walk.

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[i] Fazio, Sam. “The Individual Is the Core-And Key-To Person-Centered Care.” Generations. American Society of Aging. 2013.

[ii] Derry, S. J., Schunn, C. D., & Gernsbacher, M. A. (Eds.). (2005). Interdisciplinary Collaboration: An Emerging Cognitive Science. Mahwah, NJ: Lawrence Erlbaum.

[iii] Stanhope, V., Tondora, J., Davidson, L., Choy-Brown, M., & Marcus, S. C. (2015). Person-centered care planning and service engagement: a study protocol for a randomized controlled trial. Trials, 16(1).

[iv] Bronstein, L. R. (2003). A model for interdisciplinary collaboration. Social Work, 48(3), 297+.

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Excerpts of this article were originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

Growing up I experienced cramps of such intensity in both of my legs that I would break into sobs because of the strength of the pain.  In most cases, a hurting and weeping four-year-old does not have the expressiveness or coherence to say anything beyond “It hurts.” I did not have sufficient words to explain anything about the pain I was experiencing.

When the Doctor said “You had a Charlie Horse”, I thought who is Charlie? And where is his horse? I did not connect or understand that “Charlie Horse” was a label for my muscle pain.  When I was old enough to start asking questions, none of the doctors or therapists could fully explain the cause of my leg pains.

The hypothesis was that the pain was a result of involuntary contractions (spasms) of specific muscles.  Most often the pain occurred in my calves and hamstrings.  The spasms could occur at any time.  When I would wake up with the leg pains, my parents would use massage and passive stretching to provide relief. Thankfully, the experience of this specific pain was often short-lived.

As I get older and my experience with Spastic Cerebral Palsy evolves, I have had to become more versed in complex topics, such as pain, that I wish I had no need to know.  Pain can be insidious.  I have felt the “pins and needles” sensations of nerve pain, the burning, and the electrical shock sensation.  I have been hyper-sensitive to touch and palpitation.  I had to learn to distinguish between muscle pain and nerve pain by the amount of time (duration) the pain lasted and whether or not I felt an ache or a burning sensation.

My experience with muscle pain has most often been of short duration.  I feel an ache, a dull but persistent kind of pain that lasts a few hours or a couple of days.  My experience with nerve pain is often as a sharp and burning sensation that can last for a few hours or last weeks at a time without going away.  There are times when medical intervention (e.g. medications) can alleviate the discomfort to a degree and times when there is no level of relief.

There are days when I feel like the child who woke up in the middle of the night.  I can remember wanting “Charlie and his Horse” to come and make the pain in my legs disappear.  When one experiences re-occurring pain, the age of the person does not matter at all.  The person just wants the pain to stop. The person may want to understand why they hurt, the cause of the pain, and how to make the pain go away, but first and foremost, they need the pain to stop.

Doctors, therapists, trainers, and other fitness professionals only witness reactions to pain or hear accounts about it.  They do not feel it directly.  Yet these skilled and capable professionals are taught to ask about the location, quality, and the intensity of the pain.  As skilled and proficient as I always try to be about the description and details about my pain, there are points when I fail.

The intensity of my pain can vary.  The pain can start in one spot and end in another or travel.  I cringe at the question, “What does your pain feel like?” The first thought that goes through my mind is “How do I explain the feeling of chronic burning?” Will the words burning, searing, throbbing, or steady burning, convey the message?  Has the professional ever felt like their skin was on fire?

Tools that Doctors and other professionals use to assess and diagnose pain are constantly improving.  The American Chronic Pain Association offers a number of resources which may be useful including a quiz on nerve pain, pain scales, brochures on pain management and understanding nerve pain, and a searchable database of resources. [i]

I would have loved to have a conversation with my Doctor about “Charlie and his Horse” when I was younger, so that I was more engaged, and had a better understanding of what a muscle spasm was.  In my adulthood, I am learning to have a better understanding of pain and related symptoms beforehand.  Is there a way to teach people about pain prior to dealing with searing or throbbing pain or steady burning?

Muscle relaxants and exercises are often the prescribed way of managing pain.  I wonder if there are ways to introduce the concepts of pain and how to recognize and deal with pain in a preventative context for children, who turn into adults who must manage their own version of “Charlie and his Horse” and pain?

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[i] http://www.theacpa.org

This article were originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

For eight weeks in 2015, life as I knew it stopped. I saw every doctor possible to identify the cause of a mysterious and unknown pain in my legs. By the fifth medical visit, I was exhausted. Every test that was conducted came back normal. However, I went from being able to walk three miles a day to not being able to walk across a room without feeling excruciating pain.

I argued with the doctors and representatives from the insurance company. I knew how to fight for tests that would help me to get answers and a diagnosis. I wrote letters that explained the pain I was experiencing was not typical. I had to gather medical information and records that verified this fact. It was only after receiving this evidence and documentation that the doctors wrote authorizations for a Nerve Conduction Velocity (NCV) test and an MRI. An NCV is a test to see how fast electrical signals move through a nerve. This test is done along with electromyography (EMG) to assess muscles for abnormalities. The NCV test came back normal. The MRI came back showing stress fractures in my ankle that were not visible from an x-ray.

After my foot was casted, I could not bear weight on my ankle for the next two months. When the cast came off, my first steps were tentative. I found I was afraid to put weight on my right foot. After a few steps, I realized I could move with the support of my walking devices. My right foot was weak. The loss of strength and function became evident by the increase in my foot drag, the visible turn out of my foot, and my inability to lift my foot up when I attempted to negotiate stairs.

In the weeks that followed, I asked the question I did not want to ask. “Did my aggressive approach to walk without devices cause this injury?” The medical professionals I worked with did not know the answer to this and could not tell me how to prevent the injury from happening again. They advised caution. The aggressive approach I was pursuing to walk device-free could have contributed to the injury. Their recommendation was that my exercise and fitness regimen had to change, be less aggressive, and focus on preserving my mobility instead of attempting to walk-device free.

An English author, Sarah Evans states the following about feelings of failure “Failure is hard. Whenever it happens, in whatever form it comes, however old you are, it will always be difficult. But come it will.” [1] I knew failure could come. I was not ready for it. When I looked up definitions of failure from various authors in health care and other disciplines, failure was defined as falling short or not achieving something desired.

I originally thought that not having answers about the cause of the pain in my legs was the scariest and hardest part of my experience. All of a sudden all of my effort and work had to stop. I did not expect the intense emotions that came after the injury. I was angry that the injury occurred. I was irritated with myself for being too aggressive with my exercise and fitness regimen. The broken bones represented a larger loss. I lost my sense of spirit, optimism, and confidence.

Adversity is defined as experiencing a hardship, for example, an injury or an illness. I suffered a temporary physical injury. In my mind however, I saw ten years of effort culminating into a perceived failure. The broken bones in my ankle made me feel vulnerable. Overcoming the sense of loss and disappointment that I had failed was hard. I was used to succeeding and overcoming obstacles.

Resilience is about finding a new path after a setback. I had to regain a sense of confidence and define a new outcome. Instead of walking-device free, the new goal involved identifying strategies to maintain existing mobility and trying to improve it over time. Tell me Wiley’s Walk Readers, how have you faced and conquered adversity?

[1.] Evans, S. H. (2000, March 13). Facing Up to Life in the Real World Can Be Hard; Sarah H Evans Says Young People Should Learn How to Deal with Failure. The Birmingham Post (England).