Wiley's Walk

Typically, where I live, there is a flurry of activity. There is a steady stream of people and traffic. Everything is in motion. In February, I was a part of that flurry of activity.  I went to work, I went to the gym, I had plans with friends… Then, one Saturday, I work up and had severe pain in my knee.  My right knee buckled.  I struggled to stand and walk.  The pain was severe enough that I knew I needed to see a doctor.

I scheduled a ride with Uber and went to the local Urgent Care that had an orthopedic clinic.  As I waited for my name to be called, I mentally prepared myself for the conversations that would take place with the medical staff.  I had never seen medical professionals in this practice. I had copies of the medical notes from recent visits to my primary care doctor with me to verify the past orthopedic issues from Spastic Cerebral Palsy.

My name was called and I limped down a long corridor.  The trekking poles that typically make my walking faster and easier, were hindering me now.  It hurt to walk.  When I entered the exam room, the nurse asked me to get up on the exam table.  I explained that I could not get onto the table because the table was too high and that I could not bend my knees or lift my legs high enough to get up on the table.  I knew if I made the attempt, it would jar my injured knee too much. I explained that I was in a lot of pain.  The nurse then asked on a scale of 1 to 10, what may pain level was.  I answered a 7.5.

She took my vitals and reviewed the medical records I provided.  There were discrepancies between the electronic record on her computer and the paper files that I supplied.  The nurse worked with me to correct the inaccurate information.  Errors included a list of incorrect medications.  For some reason medicine I no longer take remained in the electronic record.  The lesson:

– Always ask for a summary of every medical visit and share relevant information with new doctors and their medical staff.
– Ask for a copy of x-rays, and related test results, and
– Always share a list of current medications.

A Physician’s Assistant (PA) came to see me next.  The PA verified my medical history and said that I needed an x-ray of my knee.  I had to walk down another long hallway to get the x-rays taken.  The PA returned and showed me the test results.  The only thing the x-rays showed were signs of arthritis.  Due to my pain level, the PA thought I had a meniscus tear. Meniscus is a piece of cartilage in the knee that cushions and stabilizes the knee joint.  Signs of a tear include pain and swelling.  The PA was concerned that due to surgery I had on my hamstrings, the scar tissue could be hiding a potential blood clot.

The PA wanted to send me to another orthopedic clinic that was over 30 minutes away to have another set of tests done to see if I had a blood clot.  I explained that I did not drive.  I asked if there was a closer office or facility to get the testing done.

The PA asked me to call a family member or a friend who could give me a ride. I explained that I was not able to reach anyone; it was a Saturday after all.  I explained that my closest family members were over two hours away.  The PA scowled and said the only other option was the Emergency Room (E.R.).  I said I would take an Uber to the Emergency Room.  The PA did not appear to understand the challenges of not driving or the logistics transportation alternatives require.

I have not been to the local E.R. in a long time.  The triage nurse saw me limp in through the automatic doors.  The nurse got a wheelchair and had me sit down.   After completing the required medical forms, I waited to be assessed by the next set of medical professionals.

Time seemed to slow down.  I caught myself looking at the time approximately every ten minutes.  I tried to call a couple of local friends while I waited.  I could not reach them.  I did not know if I could walk out of the E.R. alone after the tests.  My knee really hurt.

A doctor approached me and said anti-inflammatory medication had been ordered to help alleviate the pain in my knee.   Another nurse came with a gurney.  I maneuvered myself from the wheelchair to the gurney.  The nurse wheeled the stretcher down several long hallways.  I ended up in a room with an ultrasound machine.  The ultrasound would be used to see if I had a blood clot in my knee and leg veins.

A technician performed the tests and I had to wait for the results.  While I waited, I tried calling family and friends again.  I could not reach anyone.  My anxiety increased.  More time passed and all of my calls to people rolled to voicemail.  I finally reached my brother who lives over two hours away. When he answered the phone, I felt a surge of relief.  He would drive up if I needed help.

The technician returned.  The test results showed that I did not have a blood clot.  I was fitted with a brace called an immobilizer.  The brace wraps around the leg from the mid-thigh to the ankle.  It has metal rods that go down both sides of the brace to immobilize the knee and limit movement.  I needed to find out if I could stand and walk with the new brace.   I asked the nurse to hand me my trekking poles.   My hands were sweaty from nerves.  I took the poles from the nurse. I thought:

“I need to be able to walk out of the Emergency Room.  I need to be able to walk to get to the Uber car.  I need to be able to walk to get into my house.”

I tentatively stepped.  I felt almost giddy when I realized I could move and walk around despite the extra  weight of the new brace on my leg.  The nurse had me walk down another stretch of hallway to ensure that I could safely maneuver and walk.  After several minutes and several steps, we both seemed satisfied that I could walk with the injury and manage.  I received my discharge papers and strict instructions that I should stay off the knee as much as possible.

I was to follow up with an orthopedic specialist in three weeks.  I questioned the time-frame.  Three weeks?  The nurse confirmed the three-week time-frame was correct.  I asked whether there were any earlier appointments.  The nurse indicated that I had received the earliest appointment available.  I walked toward the exit of the Emergency Room feeling somewhat deflated.  Three weeks is a long time to wait, especially with an injury. 

I made my way to the parking area for Uber cars and waited my ride.  I began to mentally plan for what I would need to change over the next three weeks.

“I can do this.” I thought. “I can do this.”

I did not realize at the time that my journey with this injury was far from over.

While walking to the Fitness Center for one of my sessions, I passed a pickup truck. The driver is getting ready to pull out of the parking lot.  The truck smoothly shifted into 1st, 2nd, and then 3rd gear, and proceeds to drive out.

When a person moves, one muscle shortens and another lengthens.  A pattern exists.  For most, the act of walking is automatic and fluid.  When I walk, my movements are not fluid.   My body does not easily stretch.

Walking for me is often just like the truck I saw shifting into gear. You simply can’t go to 2nd gear if you can’t get out of 1st.  My walking program and exercise sessions are designed to introduce and change patterns to make my movements more automatic and fluid so I will not get stuck in 1st or 2nd gear.

Forms of yoga are part of my workouts to develop improvements in my posture, flexibility, and breathing techniques.  One of the yoga poses that I practice is the “Rock Pose.” This pose is done by sitting on the heels, keeping the spine straight.  I take my place on the mat and attempt to perform the pose.   As I work, I am reminded of the pickup truck and how the driver smoothly put her vehicle into 1st gear.  1st gear for the driver is the acceleration step.  For me, 1st gear is to sit on my heels.

At a certain point, my legs will not bend further.   It feels like I am stuck in my 1st gear somewhere between start-up and acceleration.   I feel my face getting hot and I know that I am turning multiple shades of red. I have forgotten to breathe.

I have to be reminded to take a breath.   I cannot get my legs to respond.  In that specific moment, I think about a truck getting stuck.   An inexperienced driver can panic and try to increase his or her speed to get unstuck.  The probable result from accelerating while being stuck is that the wheels will spin and the vehicle will get more entrenched.

Similar to a truck tire spinning, my body can get stuck and not perform movements beyond a certain level, due to spasticity (resistance to stretch) from my Cerebral Palsy.  I get stuck.  In my attempts to master the yoga poses, I have come to understand that, as much as I may want to hurry up and move, yoga can enhance my control of muscles and improve coordination.   Better coordination means improved mobility.

During this particular session, I was not successful at sitting on my heels or even coming remotely into contact with my heels.  So, I will continue to practice my “Rock Pose” and other forms of yoga with the hope that my body will learn how to move seamlessly from 1st to 2nd to 3rd gear.

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).

On occasion, I get asked to speak to groups about my experiences with Spastic Cerebral Palsy.  In the fall of 2013,  I stood in front of a group of health and fitness professionals and delivered a presentation about my fitness and walking program.  I spoke about why I started the program, provided examples of evidence-based methods that have been used to advance the work, and offered a glimpse of the “science” behind the approaches, routines, and daily workouts.  During the question-and-answer period, an audience member asked “What keeps you going?”

I’m not an expert on subjects such as Cardiovascular Health or Kinesiology. I do not have a complete understanding of the science.  What I did know and what prompted me to act was that my personal situation had to change.  I was losing mobility, was in pain, and I needed to take control of my circumstances.

I also knew what I didn’t know.  I was acutely aware that I did not have the prerequisite knowledge to start to break down old patterns of movement to build new patterns.

When I started, raw and intense feelings of fear and a need to change pushed me forward.  At the time, information about the theories and hypotheses about movement, mind-body connections, and how it all fit together did not interest me.  Pain — a feeling, not academic theories or evidence — caused me to engage and propelled me to act.

I read an article by Annie Murphy Paul called “The science of interest: pioneering research reveals a secret ingredient for fostering real learning.” The article defines the concept of interest and its link to learning.  The author reviews research and strategies to help librarians foster learning with youth.

I was attracted to the article’s premise about developing personal interest and engagement. Paul calls interest “a psychological state of engagement,” and describes a “push- pull” impulse that results in learning and action. [1] I can picture and attest to experiencing that “push –pull” phenomena.  The push is the need to move forward.  The pull is that stagnant state, where a person confronts the question, “Am I really ready to move forward?”

For me, my push-pull impulse centered around the idea that I had used one method of movement – using crutches or assistive devices – for over thirty years.  I knew that approach was no longer working.  The approach that has been helpful for over three decades was now causing me intolerable pain.  My presented options were few – I could continue to use crutches and deal with pain or I could create my own alternatives.  Was I ready?  What alternative would I choose?

Annie Murphy Paul uses the term “invigorated”, when she describes a person who engages. As I read the article, a line in her piece resonated with me: “when we are interested in the task, we work harder and persist longer.” [2]

Physical pain caused me to engage – the unyielding feeling started a process. I had to work through the “push – pull” phase of “Should I proceed to change how I move?” to start to actually pay attention, engage, and have interest.

Paul makes the point that when there is a clear and present interest few alternatives may actually exist. [3]  In my situation, after coming through the “push-pull” phase, I only had two choices.  The first choice was to remain in pain and use more restrictive assistive devices to manage the level of pain.  The second choice was to get interested and start to find answers and make changes to stop it.  I chose the second option.

Paul’s article discusses the process of engagement as a “catch and hold event”. [4]   A person’s interest has to be captured and sustained.  The “catch” for me was the idea that I could actually make changes that would stop the pain.

Paul’s article eloquently details the “a-ha moment” when a person moves to a state of persistent attention; where the “catch” of their curiosity has been successful and learning occurs because there is sustained interest.
When I learned I was capable of changing a very unpleasant state, I became interested in the science.  I started to study the theories and approaches suggested by the health and fitness professionals.  The theories and approaches became more understandable, logical, and digestible once I was engaged and ready to learn.

I had to see examples of the theory.  I had to visually see a movement to start to attach the premise to the exercise.  When people showed me what to do and linked the theory to practice, that was the “hold” in the “catch and hold,” phenomena; when I understood and was able to adopt and own the scientific theories.

The answer to the question “What keeps you going?” is simple. It is the “catch and hold” principle that Annie Murphy Paul describes.  I was initially “caught” by pain and fear.  The “hold” came through the exploration of options; when I put the science and theory into actual practice. I relate to it and want to see and feel what happens next.

[1]Paul, A. M. (2013, November). The science of interest: pioneering research reveals a secret ingredient for fostering real learning. School Library Journal, 59(11), 24+.
[2] Paul, A. M. (2013, November). The science of interest: pioneering research reveals a secret ingredient for fostering real learning. School Library Journal, 59(11), 24+.
[3] Paul, A. M. (2013, November). The science of interest: pioneering research reveals a secret ingredient for fostering real learning. School Library Journal, 59(11), 24+.
[4] Paul, A. M. (2013, November). The science of interest: pioneering research reveals a secret ingredient for fostering real learning. School Library Journal, 59(11), 24+.

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).

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.

[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+.

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?

[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).

In honor of Memorial Day and my friend Stella Wetterhahn … Stella Was A World War II Veteran and a Nurse.  She will be in my heart forever…

Every Saturday, after my workout, I get on a bus and head Downtown to meet my friend Stella. I have known Stella since 2007. She will be 92 in July. Stella is a retired Nurse. She served in World War II. Stella has never deviated from the schedule she had as an Army and Private Duty Nurse. She worked the 11:00 PM to 7:00 AM shift.

Stella and I meet at the local library because she likes to read the newspaper. When we meet, we discuss the daily news and chat about what is going on in the neighborhood. When we finish at the library, we head over to the corner Deli. I once asked her “what keeps you going at your age?”

Stella laughed and said “There are three keys:
1.Structure,
2.Getting out, and
3.Connecting with people”.

Without knowing it, Stella defined the concept of Active and Healthy Aging. Research identifies Active Aging as “the development and maintenance of optimal physical, mental, and social well-being and function in older adults”. [1] In her article, “A Concept Analysis of Healthy Aging,” Linda Hansen-Kyle defines Healthy Aging as “a process of slowing down while adapting to optimally function and participate in life.”[2]

A Review of Trends:

Research shows that Adults age 65 to 85+ are the fastest growing population and group; a trend that is to continue for at least the next 50 years. [3] Research indicates that 88 percent of Adults age 65 and over report having at least one chronic condition (e.g. Heart Disease, Diabetes, or Arthritis). [4]

The statistic in the literature that caught my attention said “one third to one half of woman age 70 and over have challenges with mobility”. [5] Several studies document the need for physical activity to maintain mobility and independence. [6] Research shows that the act of “getting out” and engaging in 150 minutes of physical activity is beneficial for older adults. [7] For people like Stella, the recommended 150 minutes can translate into 30 minutes of walking each day. [8] Stella’s definition of Active and Healthy Aging is going to library each day, going for a walk, and not staying inside for long periods of time.

My friend has a set purpose, destination, and routine for each day.

Stella’s reference to “connecting with people” means that she has an established social network. She has successfully created a system of support to address any needs that may come up. When Stella is not able to get outside due to inclement weather, for example, the Deli Shop owner will deliver food to Stella’s door. She receives the assistance that she needs from people in her neighborhood.

Stella’s reference to “connecting with people” is also corroborated by current research. Studies show that having a social network, engaging with people, and participating in social activities may delay cognitive decline and other health-related consequences. [9]

When our Saturday visits end, I walk away from Stella smiling. She personifies the keys of Active and Healthy Aging.  At the age of 92, Stella may move a bit slower and have occasional pain in her knees, but she thrives in her neighborhood and community.

She has taught me about resiliency, Active and Healthy Aging, and living. I know my keys to Active and Healthy Aging will include exercise, healthy eating, and activities to maintain my mobility and independence. What are your keys to Active and Healthy Aging?

[1] Marshall, V. W., & Altpeter, M. (2005). Cultivating Social Work Leadership in Health Promotion and Aging: Strategies for Active Aging Interventions. Health & Social Work, 30(2), 135-144.

[2]Hansen-Kyle, Linda. “A Concept Analysis of Healthy Aging.” Nursing Forum. Blackwell Publishers Ltd. 2005.

[3] Rogers, N. L., Green, J. L., & Rogers, M. E. (2012). Physician-prescribed physical activity in older adults. Aging Health, 8(6), 601+

[4] Marshall, V. W., & Altpeter, M. (2005). Cultivating Social Work Leadership in Health Promotion and Aging: Strategies for Active Aging Interventions. Health & Social Work, 30(2), 135-144.

[5] Marshall, V. W., & Altpeter, M. (2005). Cultivating Social Work Leadership in Health Promotion and Aging: Strategies for Active Aging Interventions. Health & Social Work, 30(2), 135-144.

[6] Rantakokko, M., Iwarsson, S., Hirvensalo, M., Leinonen, R., Heikkinen, E., & Rantanen, T. (2010). Unmet Physical Activity Need in Old Age. Journal Of The American Geriatrics Society, 58(4), 707-712. doi:10.1111/j.1532-5415.2010.02792.x

[7] Centers for Disease Control and Prevention (CDC). How much physical activity do older adults need? www.cdc.gov/physicalactivity/everyone/guidelines/olderadults.html

[8] Centers for Disease Control and Prevention (CDC). How much physical activity do older adults need? www.cdc.gov/physicalactivity/everyone/guidelines/olderadults.html

[9] Flatt, J. D., & Hughes, T. F. (2013). Participation in social activities in later life: does enjoyment have important implications for cognitive health? Aging Health, 9(2), 149+.

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).

I came across a book called “Everybody Belongs: Changing Negative Attitudes toward Classmates with Disabilities.” by: Arthur Shapiro. The book was written several years ago and yet the themes from the book apply easily in 2019.  Mr. Shapiro’s book offers in-depth perspectives and strategies about how to change negative attitudes and biases about disabilities.

Mr. Shapiro’s book cites studies that show that the concept of disability is generally viewed negatively. [i]  Research shows that children develop misperceptions about disabilities by the age of 5. [ii] Mr. Shapiro writes about how we integrate attitudes, perceptions, and prejudices about disabilities very early from books, media, and through interactions in community settings like schools. Research shows that developed prejudices tend to increase and become more set as children progress through school. [iii]

The research highlighted by Mr. Shapiro gave me pause, misperceptions about disabilities form by the age of five.  I am bothered about the negativity that can and does exist about disabilities.  When I read that misperceptions become more fixed as children age, I become increasingly bothered.

I am bothered by an observation that I keep encountering, the idea that expectations for people with disabilities are generally lower. I read an article which cited research that said “people with disabilities are still habitually regarded as people to be pitied because of disability or admired based on minimal efforts and achievements.” [iv]

Based upon my review of this literature, I started to consider the idea of expectation in the context of my fitness regimen. When I started my fitness journey in 2006, I was originally driven by a notion that I would attempt to walk without the aid of crutches, canes, or any support  device, in all environments, full-time.

In the 13 years that have passed, my walking and fitness goals have shifted and changed from walking device free to improving and maintaining movement and ability.  However, the notions of effort, progression, performance, and the “can and try” principle created a standard of expectation and achievement in my program and goals.

Effort

I always make an attempt or a repeated sequence of attempts in a fitness task even if I do not achieve the intended result. The team of Fitness Professionals I work with expects 100% of my effort regardless of the nature of the task.

Expectations of my achievement have also increased over time. The  goals are always to improve, expand, and create ability compared to setting a standard of minimal achievement.

Progression

The team of Fitness Professionals working with me are helping me to learn new movement patterns, modify existing ones, and lessen compensatory movement  patterns that I have developed from Spastic Cerebral Palsy.

Performance

The Fitness Professionals provide feedback based on the performance I deliver or based upon the needs that they see. The feedback that I receive is skill-specific and not disability-specific. I am taught skills at a pace and frequency that support me to improve upon or achieve a specific task.

The “Can and Try Principle”

My team employs the “Can and Try Principle”.

Can I perform the task?

Not always.

Will I try to perform the task?

Always.

From this principle, my team of Fitness Professionals has supported a dynamic process and approach that determines the level and intensity of the support that I may need to learn or re-learn discrete skills to improve existing movement patterns or to learn new ones.

Mr. Shapiro’s notion of “Everybody Belongs” is an ideal that we have not yet reached, but is an end that we need to continue to work towards.  The concept of combining effort, progression, performance, and the “Can and Try Principle” has the potential of significantly raising individual expectations and general standards of achievement for people with disabilities in health, fitness, and many other settings.

Tell me Wiley’s Walk Readers, what other principles or approaches support increasing expectations and standards of achievement for people with disabilities?

[i] Shapiro, A. (2000). Everybody Belongs: Changing Negative Attitudes toward Classmates with Disabilities. New York: Routledge Falmer.

[ii] Shapiro, A. (2000). Everybody Belongs: Changing Negative Attitudes toward Classmates with Disabilities. New York: Routledge Falmer.

[iii] Shapiro, A. (2000). Everybody Belongs: Changing Negative Attitudes toward Classmates with Disabilities. New York: Routledge Falmer.

[iv] Harris, L. (1991). Public attitudes toward people with disabilities. New York: Louis Harris and Associates.

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).

I am almost 44 years old.  I work and own my own home.  I earned more than one college degree.  Does it sound like I am reciting a resume? Sometimes I feel that way in my interactions with the world.

I have been called “inspirational” and “courageous”.   I am not these things. I am just a woman who tries to live the best life I can.  I often raise the question: What is “it” that makes me inspirational or courageous?

I walk differently.

My movements are stiff.  My hips swivel.  My feet drag. Premature birth caused me to walk the way I do.  Spastic Cerebral Palsy (CP) is the diagnostic label and the cited reason for the way I walk.

Cerebral Palsy is also the force that shaped my attitude, drive, and approach for living my best life.  CP is just a fact of my life.  I had to learn to adapt.  Walking from one place to another, I am slower.  I exert more energy. Because I use support devices,  my hands are not free to carry groceries,  an umbrella, or even a purse. There are alternatives for all of these dilemmas.

I hire someone to assist me with groceries. I use a shoulder strap for carrying a purse. There is no easy answer for the umbrella other than I get wet because I am too stubborn to wear a hat.

People with any type of disability have to become proficient at adapting. Most are excellent planners and are masters of their time.  We give up time to move and function in the world.  What I describe here is not courage.  It is adapting to a circumstance that I do not control.

I have had to become a master at communicating- to relate, advocate, and educate the world. The primary message is always: I am just me.

CP does not define the core of who I am.  I may walk differently but there is nothing wrong with my brain.  The label of CP does not make me spectacular or comparable to an Olympic athlete.

Adapting is not done by choice.  The choices I make are around what kind of life do I wish to have?

I choose to embrace a life of possibility over limitation.

Regardless of whether a person has a disability or not, we all want to connect.  We all want to have a ‘place’ where we belong. When I refer to the concept of place, I do not mean the bricks and mortar of a building.  I did not join the Fitness Center I go to because of the physical space or equipment.  I joined because from the first day I walked through the door, I was treated as a member of the larger group.

Community in the broadest terms creates a sense of belonging for members of a group.[i]   When you consider it, all of us, regardless of disability, are members of small groups or communities including where we work, where we play, and in general where we live. In the context of inclusion, I am defining community as a place where people are brought together by a common interest. People share values including commitment, mutuality, and expectancy.

As a member of a local Fitness Center, I am an active participant with my peers with and without disabilities. We all go through the Fitness Center doors to workout; improve our health, and overall wellness.

I have read numerous articles about inclusion as a philosophy.  In the articles, inclusion is categorized as people with and without disabilities receiving appropriate supports in a common space.[ii]

Authentic inclusion is not just about space, the built environment, or allowing people through the door. It is not just about people interacting together. Authentic inclusion is a complex dynamic which builds community in a very proactive way.

I have a concept of inclusion that I have applied in my own life. To me, inclusion is active participation in age-appropriate activities.  Inclusion in practice means that I am a part of a larger group, contributing, and interacting with diverse members.  Regardless of the diagnosis of Spastic Cerebral Palsy, I become a member of a community—a larger group with similar goals. Authentic inclusion means I am embraced and accepted based on my contributions in a larger group.

Authentic inclusion means building that sense of community— fostering the idea and the feeling that I, Kerry Wiley, am welcomed and belong in this space, just like every other person.  When Authentic inclusion happens staff and employees at the Fitness Center can serve as the connectors to the other members.

“Kris, I would like you to meet Kerry. Kerry came to us to improve her health and mobility”.  Through a simple, deliberate, and informed introduction, a person can be brought into the mission and the culture, and common practices of the group. 

Over many years  in the local Fitness Center, I have been encouraged by members in this community to achieve defined goals.  I have been encouraged to pick myself up and try again in times of failure.

Authentic inclusion is organic and dynamic.  When it happens, it is not just me on my own anymore.  There was a broader “we”.   People with disabilities in my experience need more opportunities for authentic inclusion—to be a part of a  larger group with similar goals, to be embraced, and contributing.

Tell me, Wiley’s Walk readers, what does Authentic inclusion mean to you?