Reclaiming Natural Movement: Practical and effective therapy for ataxic movements due to neurodegenerative disorders and other causes

By Thomas L. Clouse

"When standing I feel unstable, and I often stumble and fall. What can I do to correct this and walk better?"

This is a common question people with problem movements ask. They then receive advice, yet little of it is useful to them. Through generations this continually happens, and it is because this next question remains

• Language: English
• Publisher: Reclaiming Natural Movement with TLC, Inc.
• Release date: Nov 13, 2020
• ISBN: 9781734873412

Thomas L. Clouse

In October 1997, Dr. Tom Clouse's world was forever changed when an evaluating neurologist informed him, "I'm sorry to tell you that you have a neurodegenerative disorder, and you will not be able to continue as a general surgeon. Also, as your symptoms and deteriorating movements progress, you will need to simplify your life to better cope with the changes. I wish there were something we could offer you in treatment or therapy, but there is nothing that seems to help." Dr. Clouse's productive life was thrown into a spiraling tailspin. The neurodegenerative disorder is spinocerebellar atrophy, and the affected parts of his brain are the cerebellum and brain stem. The disorder causes these areas to slowly degenerate, to become smaller, and this negatively affects his speech and movements. Subsequently, due to his increasing movement difficulties and near-daily falling episodes, in 2003 a neurologist advised him to begin using a walker for his safety. But he refused, determined he could do better. Instead of surrendering to the progressive degenerative effects of the disorder as the medical understanding said was inevitable, Dr. Clouse rejected his colleagues' advice, while strongly questioning and refuting some of the beliefs and information those without the disorder had published. Why? Living with the effects of the disorder, and discovering how he was able to substantially correct his movements and speech, he had improved when they had stated he could not. Through only his personal efforts and determination, Dr. Clouse worked on how to improve his movements, and succeeded to such an extent that he regained and has retained his ability to function in a near-normal capacity. As a result, he has traveled extensively throughout the United States and internationally, working with other movement-impaired people to help them improve. His discoveries and techniques fill the pages of this book.

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CHAPTER 1

MY STORY

Growing up I was just like all the other kids, playing all the games and sports. I did chores and ditched doing them. When I got caught, a stinging butt gave me a new incentive to do the chores I was supposed to have done. In this regard, my childhood was much the same as that of any other young boy growing up in a large family in the 1950s. Back then my movements and physical abilities seemed normal and ordinary. I was good at some things and not so good at others.

I was born in 1952, and we lived in northwestern Ohio on a small farm until Dad moved us to southwest Florida in 1963. In 1970 I graduated high school, enlisted in the air force, and spent the next eight-plus years mostly working on fighter aircraft and seeing some of the world. Then, in the fall of 1978, I left the military and made a commitment to completely change the direction of my life’s ambitions and goals.

I was twenty-six years old, married, and had two children. I wanted to improve the prospects for my future when I enrolled at the University of New Mexico in Albuquerque in January 1979. This was foreign territory for me. As a high school student, I had not applied myself very well. Now, starting college, I was in an academic hole but determined I could fill that void and succeed.

My commitment to this new academic path eventually took me through three graduations. I earned a bachelor of science degree in 1982, was awarded my MD degree in 1989, and then completed my general surgical residency in June 1994. Finally, at forty-three years of age, I stood on the pinnacle of my academic successes and proudly opened a private practice as a general surgeon.

Fate had another plan. In the third year of building my surgical practice, some of the little things that had surfaced during my residency program became concerning. The mild and soft issues of not-perfect movements were becoming more noticeable to me, especially in the dexterity of my hands. The changes were subtle, so much so that no one had made any comments on my work or ability. That didn’t matter. It was enough that I recognized it.

I was sickened by what I had to do, but the potential risk to any person under my care was too great to simply disregard the truth. It was an extremely difficult choice to make when I put a hold on my surgical practice and began working as an emergency room physician. I needed time to sort things out. These subtle issues had to be diagnosed and resolved. Deep inside I sensed my career fading away from me. My gut ached the day I walked out of my office and down the hall to the office of my colleague, a neurologist.

As a physician, being in small rooms with white walls, an exam table, a small desk, a chair, and a stool on wheels was an everyday occurrence. I was very comfortable working in such rooms while wearing the long white coat. I was the healer, the fixer of human ailments, and I loved who I was, my life, and my career. But then came the day when I was not the one wearing the long white coat in the small room. Instead, I was sitting on the exam table as a patient waiting for the person wearing the white coat.

SLIPPING AWAY

It was on an otherwise bright and sunny October day in 1997 when my world changed forever. On this day, with my shoes and socks lying on the floor, I sat on the exam table waiting to be informed of the cause of my movement and, yes, cognitive issues too. Then came these unexpected and absolutely numbing words:

"I’m sorry to inform you, Dr. Clouse, but you have sporadic OPCA (olivopontocerebellar atrophy). Because of this, you will not be able to continue your career as a general surgeon. You also will not be able to continue working as an emergency room physician.

"Your MRI scan shows that your cerebellum is degenerating, and we do not know why that is happening, but we know it will continue. As that part of your brain continues to reduce in size, your movements will become clumsier and eventually ataxic, which means many of your movements will become increasingly uncoordinated.

"This will likely affect your hands, arms, and legs. Your ability to walk will become more problematic to the point where you may eventually need a cane or walker to avoid falling. Unfortunately, some people with this disorder eventually must use a wheelchair, but hopefully you won’t be one of them. You can also expect that you will begin having problems with your speech, memory, and possibly other mental issues as your condition continues to deteriorate.

"I’m sorry, but we have nothing to give you that will slow or stop the degeneration from continuing in your brain. But I can give you some medications for the depression you will certainly have.

"For your declining movements, we can send you to physical therapy, but that does not seem to change things much. While it does seem to help some people a little in the beginning, the positive effects of that therapy don’t last very long.

It’s unfortunate, but we have nothing to offer that will change the eventual outcome. I can only tell you to do the best that you can to cope with it. You will also find it helpful if you can find a way to simplify your life.

GONE. In the blink of an eye, my career, everything I had worked so very long to achieve, was stripped away. From standing and working on the top of the mountain, I had just been thrown to the bottom of the lowest point on Earth. My career had just started, and now I was being told it was over. I was trying to comprehend this nightmare when my colleague went on to advise, You must somehow learn to accept it. In the whirling of the moment, I had no response. Battered and numb, I was paralyzed in a darkened pit of my mind where the words of my spoken diagnosis lingered.

A few years later, further tests determined that I have a genetic mutation in my DNA, a rare degenerative neurological disorder known as spinocerebellar atrophy type 14 (SCA14). This disorder causes a portion of the brain to degenerate—to shrink away is an easy way to visualize it. The parts of the brain that are slowly degenerating are the cerebellum and a portion of the brain stem. These areas are involved in the control and coordination of movements, as well as many other functions such as cognition and memory. This clearly explained the movement and other issues I had been experiencing.

Before I left that life-shattering appointment, the neurologist informed me of a support organization and a good resource for many of the questions I would surely have. He told me of the National Ataxia Foundation (NAF), whose membership consists of individuals with neurological disorders similar to mine. A few weeks later, I contacted the NAF and became a life member.

The NAF is an organization that is dedicated to improving the lives of persons affected by ataxia through support, education, and research, according to www.ataxia.org. Ataxia is a symptom, the result of a disorder or condition. It is not a diagnosis. It is merely a word used to describe the characteristics of a person’s movements. A definition of the word ataxia is a neurological sign consisting of a loss of coordination of the muscles, especially of the extremities. In common terms, the person’s movements are clumsy, and the person does not know how, nor have the ability, to correct them.

SEEING THE TRUTH

The first NAF conference I attended was on March 25, 1998, the day of my forty-sixth birthday. As I walked toward the designated area in the hotel to register, I could hear the collective voice of multiple people engaged in a clutter of conversations coming from a large room. As I entered the room, I saw people of all ages scattered throughout the room in loose groupings. Some were seated, some were standing, and some were moving within and among the clusters of people. Some used canes, others were leaning on their walkers, and a few were seated in wheelchairs. The majority of the people in that room had obvious and significant disabilities, yet a party-like atmosphere filled the air. For a few minutes, I watched and pondered the situation as it became clearer what was actually happening.

They were celebrating their camaraderie within the bond that had brought them all to this place so far away from their homes. Through a mutual connection within their conditions, they gather annually to regain some sense of belonging, as opposed to their daily sense of isolation. And now, according to the diagnosis printed on the name tag I was wearing around my neck, very reluctantly I was one of them.

Here, among others with similar afflictions, these people were not alone. Here they were not cast out by judgments about their external appearances. Here they congregated to escape the harshness of the world. In this close-knit annual gathering and organizational community, they shared a belonging within a select group. Their disabling conditions gave them a common bond, rather than dividing them as their ailments did outside these walls, in the world of public perception.

Through social media, long-distance friendships had been built around this shared condition. Now in this large gathering, the attendees personalized the relationships, while stories of like situations, tragedies, and despair solidified the bond. Studying the people and listening to multiple conversations, I felt they collectively said, We, the kindred souls of this shared disorder, have come together to bolster support from within, to cinch ever tighter this common bond. But still, we so desperately wish we could free ourselves from the disorder that has created the need for this bond.

On that day, they welcomed me as one of them. Yet in my mind I was not ready to be one of them on their level. I was not disabled. I was not at all like them. As I stood among them, it was so easy for anyone to see, or so it felt to me. Compared with the affected people surrounding me, I measured myself as quite normal in both my movements and speech. Yes, I had the diagnosis of the disorder on my name tag, but it was very difficult for me to relate to their level of inability and disability, their situation. In print I was one of them, but my mind was not ready to except this fate, their fate. Still, deep within, I could not hide from the truth.

For this first time, from voices of the many living with it, I heard and witnessed how this disorder engenders misery, frustration, and despair—virgin emotions I was only beginning to experience. Still, I could not fully admit to those emotions within myself. But in hindsight, I was only refusing to see or accept them. That was because in my conscious thoughts I was still a doctor at another conference, and these people with their neurological disorders were just an extension of the conference. Yet, the reality of the recent diagnosis emblazoned on my name tag haunted and reminded me that someday soon I would be just like many of them. How long would it be before I was the one struggling in the chasm between the normal and disabled worlds? I looked around and very reluctantly wondered, In a few years, which of these people will I be?

The next morning as I walked to the conference area, there were so very many more people in every stage of movement impairment. Kids in wheelchairs rolled themselves around their small groups as they laughed and heckled one another. Elderly men and women moved about slowly with the aid of walkers. Others walked and moved precariously, holding on to family members.

I had never seen the likes of this before: so many people of all ages showing mild to severe degrees of impairment, intermixed with a smaller number of normal-appearing individuals. The differences between the normal and those who were not were strikingly obvious. My God, I whispered to myself. I struggled to remain the physician on my normal side of the fence as I was constantly being thrown into the disability side through these myriad reminders of my undeniable future. The mold had been cast, but I was not ready to fit into it.

Four months before that conference, I had learned of my new reality dictated by this unfortunate diagnosis. Now I stood in the thick of what the disorder within the diagnosis really was. Every aspect of what it could possibly be was here in this room. Would I grow old and be like the college biology professor with the walker, whose speech I struggled to understand? Or would I become like the woman seated in the wheelchair? Maybe I would be lucky enough to only get as bad as that man over there with the cane? The reality of my future was somewhere in the likenesses of the people in this room, and that was a very depressing reality to see.

Throughout that day, physicians and researchers presented their research findings on our disabling disorders. Based upon their work, they spoke of their understanding and speculations, and collectively presented a good deal of academic and scientific information. I listened as a physician at a medical conference and understood the content. However, as I looked around, this did not seem to be the case for the bulk of the audience.

The presenters did not have these disorders themselves, so they could only speak of them in a rather academic way. To the large audience, their information and results were directed toward achieving possible treatments and possible cures for future generations—the purpose of their research. In smaller working sessions, others spoke of possible methods of accepting, coping with, and living with the effects of your disorders. I heard advice coming from experts who only knew of the concept of living with these disorders through the people they cared for or from the patients they had examined. Something was missing.

Sitting among these people with their disabling disorders, I noted a consistent undercurrent of thought coming from their repetitive gestures, tones, and voices. As I studied their stares, listened to their questions, and overheard their conversations, there was one shared, recurring, puzzling concern.

The researchers are doing terrific work, and I know it takes time, but what about me? What about me right now? How long do I have to wait before they find anything that will help me? Please! Can anyone offer me something I can use, do, or take today that will provide me with any kind of relief?

Sitting in the audience, blending in as one of them, I saw the situation with striking clarity. These people were begging and screaming for something, reaching for any hope that would help them live a better life than what their dismal disorder was handing them. The pattern was obvious in every life story and every facial expression. They all shared a continuing loss of function and diminishing quality of life, and there was nothing available that could change any of it. They were sinking into obscurity, being pulled lower into a depressing abyss where no rescue was possible.

A NEW REALITY

My disorder and diagnosis had taken my surgical career. Still, within a few weeks I began an extensive search to find a position as a general practice physician. But the recurring results forced me to relive conversations I’d had with attendees at the conference. As so many of them had shared, continuing life under the cloud of this disorder meant hitting one brick wall after another. It was true. My attempt to get back into medicine proved to be a daunting task. The initial contacts always went well, and I received numerous pending offers. But all of them were quickly retracted when the hirers learned of my diagnosis. The return call from the medical recruiter was always the same: Would you please tell me what your medical condition is again? Could you spell that so I can run it by our medical director? A few days later, the follow-up call would come: We’re sorry, Dr. Clouse, but . . . The misery within the diagnosis comes quickly.

Combined with what I was experiencing and had heard from others living with the disorder, my search for work exposed the much deeper reality of what I had been thrown into. I had stood in the prime of my career, only to suddenly be forced onto this declining path and pulled downward to join the others.

But damn it! I still did not feel, act, or look disabled. No part of me was ready to be placed on any disabled listing. My movements, I thought, were still very much like those of any other normal person. Well, almost like a normal person’s, if I had been totally honest with myself. It was a very conflicting time. One minute I viewed myself as normal, and then in the next I was reminded that this was quickly changing.

The conversation with the college professor and the voices of too many others who had lost their jobs and careers echoed through my mind. "Yes, just like us, you have lost yours too. Sadly, this diagnosis is all it takes to be thrown into the disabled category."

For seven months, I was suspended in an endless search, spending virtually every day looking for an opportunity to get back to work. Then finally the one and only offer came, and I jumped at the chance without question. Things moved quickly, and soon I began working in a general medical practice in late May of 1998. Finally, from a financial and psychological perspective, things began to improve. I was productive and happy to be wearing the long white coat and once again working in the small rooms. I let out a huge sigh of relief. This was my saving grace to remain out of the despair the others had fallen into. Now I could climb up the slippery walls of the hole this diagnosis had dumped me into and escape the dismal plight that had been projected onto me. I would be okay.

FALLING

I was wrong. The degeneration that had been foretold continued, and due to the progressive, accumulating symptoms, my last day working as a practicing physician was on January 31, 2000. My disorder had finally and officially stolen every aspect of my career and my dreams. Without hesitation, the hellhole of reality swallowed me into a bottomless pit. Plummeting deeper into the cold darkness of the disorder, I joined the voices, faces, and plights of the people from the conference in 1998.

My movement difficulties had progressed mildly. The bigger issues were double vision and cognitive difficulties, coupled with overwhelming daily fatigue. These issues could easily lead to poor decision making. Once again, I was forced to make the same moral choice I had confronted when leaving my surgical practice, as I was unwilling to potentially jeopardize my patients’ well-being to soothe my pride and ego. My disorder had now forced me to step entirely away from medicine, and I knew this time there would be no going back to recover any part of it. Four years of undergraduate study, four years of medical school, and five years of surgical residency and training: The effects of my disorder negated them all. Everything. Suddenly gone.

Anger and bitterness settled within me and held a grip for years to come. I became like the others I had met at the conference, living the nightmare of the disorder. I fought depression, only to be drawn farther into the emptiness of who I no longer was. Happiness in the simple joys of life was fleeting, often being no more than an illusion between the what was and what will never be again. I was living in an enlarging vacuum. The issues of the disorder sucked life from me, leaving a shell of a person to be tormented by the few remaining remnants of what life had been—like scraps in a dog’s dish left to wither, dry, and then be thrown in the garbage.

As it became easier to feel my steady decline, acceptance of my place among the disabled faces in the crowd was no longer a question of if or when. I was living it. I despised it. Mornings became difficult. Often when I awoke, I could sense the internal reminders of the bad day to come, even though I had not moved in the bed. On those days, there was no motivation to get out of bed. I had to force myself up to survive another day.

Those things I wanted to do in life became I have to do ‘this’ very soon, today or tomorrow, because the day is quickly coming when I won’t be able to do it. Relationships, trips, activities, everything, anything. In mind-set and attitude, my time was limited within the doom and gloom, and this led to many unwise and resentful decisions.

I felt I was standing on a very small ledge, afraid to move, hugging the slippery walls of a deep pit of emptiness. When I dared to look up, I could see a very faint small light, like a distant star in the night sky—the last remnants of me flickering above. But that light was failing, dimming with time. Attempts to find myself within it became futile, and looking up to it became a gamble. Fearing falling off the ledge into the darkness, I soon stopped looking up. All that remained was fear and despondency. With head held low, I could only see the deepening darkness below.

I was completely alone, my reality dismal, my future an unpleasant projection. Forced by circumstance into a life filled with clumsiness, loss, rejection, disdain, anger, and bitterness, I stood on the small precipice, struggling to keep some hold on a meaningful life. There were no choices to be made, no options to be found. All I could do was exist in a declining life until I would eventually fall into the black silence, my dull thud at the bottom going unnoticed. Years passed into more uncertainty.

WAKING

What the hell are you doing? This is not me, I often shouted to the emptiness. Surrender? Waiting for the inevitable? This had never been something I would stand for. I had always searched to find a way to reach a better outcome, to challenge the course and the supposed inevitable. Somehow that part of me would not die, yet it was difficult to bring it back. Still, it continued to whisper until finally it forced me to make a choice. Which would it be? Do nothing and eventually die in the darkness with fear and surrender on my breath, or find a way to change these circumstances, to live my life rather than merely surviving?

I wanted the second choice. But the voices in my head, along with the chorus of voices from people who thought they knew better, scolded and reminded me, You will never be able to do that, and you should not try. They said I could not because my disorder was causing the problems, so I was wanting the impossible. They told me I would hurt or possibly kill myself if I continued with this notion. The unified voices of negativity, the cannots and should nots, haunted me relentlessly. They mixed with the replaying memories of like experiences throughout my life.

Recalling those past experiences, I knew I would forever be trapped in the negativity if I did not stop listening to the depressing voices telling me I had no choice. Yes, these were the voices of helpful people attempting to console and soothe, but none were living the nightmare for themselves. They offered words of wisdom and advice, but only a very few pieces of what they offered seemed helpful and partially acceptable.

Fortunately, I met a person who became a good friend at the right time. Bob has a seriously rebellious side in his character. He prodded me with straight talk and repeatedly kicked me in the seat of my pants, asking, Why the hell not? He forced me to consider what I was not allowing myself to see. He repeatedly challenged my too-frequent willingness to succumb to living according to the rules, assumptions, and speculations of others. With his brash nature and brutal honesty, he challenged and forced me to venture out, to once again use my own underlying rebellious personality to find for myself what was and what was not true. Slowly I began to resurface from where I had withdrawn.

SLOW TURN TO THE TRUTH

Time. It took years to separate the medical knowledge, thoughts, and words that supported the universal belief that you do not have a choice from those that hinted, maybe you do. Everywhere I researched and everything I heard was negative and depressing.

Stubbornly, I reached a point when I simply could no longer read, listen to, or accept any more of it. I made a choice. I stopped reading and researching the medical literature about my disorder and stopped listening to anyone referring to it. I had to repeatedly stop my thoughts from going back to my medically trained side, because that side of me believed the negatives as gospel truth. For my sanity, I distanced myself from the negative understandings the medical profession spoke and wrote of. I disregarded anyone who told me what I should or could not be doing. I took Bob’s advice and ran with it. I would prove to myself what I could and could not do.

The medical literature and well-meaning people only functioned to pull me down into the depressive pit. Refusing to listen to them freed me to try, to experiment, and to test for myself what I could and should not do. I experimented on my own, made my own mistakes, and through them began to find my own way to do things better. Frequently this was physically and mentally difficult, and deep down there were often serious doubts. But that was okay. Slowly, through my own experimentation, I began to feel more alive as I came to realize that much of what I had believed to be true about living with this disorder indeed was not. Multiple times I discovered, Will you look at that. Yes, I can! I came to understand many things from an entirely different perspective.

The murkiness surrounding the truth was beginning to clear. At any given moment, my disorder is and will only be my disorder. Despite what anyone says it is, or thinks it has to be, my disorder is totally my very personal situation and responsibility. No other person can live it or physically understand it by reading about it in a book, or by evaluating other people who have it. No person will truly know these things unless they also live with the effects of it.

The truth: There was no one standing with me on the ledge in the pit of fearful despair, and there would be no one with the ability to pull me safely off that ledge. No lifelines would be thrown for me to grab. No climbing gear would suddenly appear. No one and nothing had an ability to magically change any of my circumstances. At best, there were only helping voices from far above. Voices with opinions, words, and thoughts advising gentle surrender, providing me with nothing useful to change the situation. They were only spoken words, creating sounds echoing within the darkness. I came to hate them. Their reverberating sound was annoying. With nothing to lose, I went all in. I could hopelessly stand on the ledge no longer. So, I stepped off it and into the unknown darkness. I was shocked! The darkened bottom that I had thought was fathoms below me turned out to be mere inches, and it was very stable. Thanks, Bob.

PERSPECTIVES

Allow me to put all this into the light of inspection. I am not special. I have no special abilities or talents, and I did not come across some magical super-special anything. Being led by two personal traits I grew up with, I stubbornly found a way to escape from the projected dismal despair. My stubbornness and my rebellious underlying disposition would not allow me to submit blindly without questioning and trying things on my own. With the help of a like-minded friend, these traits pushed and supported me through the tough times and challenges to finally realize:

The voices proclaiming the ‘rules’ of this disorder are in many ways wrong. I am proving that. Therefore, I will not sit and wait to see what fate living at the mercy of the disorder throws at me. I will not be another helpless puppet. Instead, I will find my way to do what I still can.

Nothing was easy, and the transition was slow. There were good days and many bad days. There were many days when I felt I was back precariously standing on the ledge. There were many just okay days. But there were also some great days. Days when I was out in the world living and proving to myself that functioning with this disorder was not all negative. I provided myself with choices, and with them came opportunities.

TRANSITIONING

Years later, with an invitation to work in the office of my brother’s construction business, I left the Michigan winter in December 2004 and moved back to southwest Florida. I left my home in the cold, snowy forest to be in a flat and open community with ample sidewalks. Almost every evening after sunset and under the streetlights, so that few people would see me, I walked the sidewalks in the warm Florida winter evenings.

My starting goal was to stay on the three-foot-wide sidewalks without my feet ever touching the grass or sand. After a few weeks, I noticed that I was not weaving as much during those walks, and I was able to stay on the sidewalk most of the time. Within a month, I realized I had gained the ability to stay on the sidewalk almost all the time while averaging two-and-a-half miles during each walk. This was great, but then two more amazing "wow" moments happened.

During a walk one evening, a realization of something I had just done stopped me cold in my footsteps. I realized that moments ago, while walking, I had looked up and to the side at the trees, birds, and other things, and I had done it without falling, stumbling, or tripping off the sidewalk. Yes, I had teetered on my feet a little, but I had stayed on the sidewalk. I stood for long moments in that spot on the sidewalk turning my head from side to side and marveled. Wow, I whispered. I have not been able to do this for such a long time.

For years, my head had been constantly tilted downward, with my eyes watching where my feet were going. For years, I had never been able to look anywhere until after I had stopped and shuffled to turn in the direction I wanted to look. Then maybe, just maybe, it was okay to look up. This was why my simple gaze from side to side that evening was amazing. I felt like a kid discovering something new for the first time. I asked myself, I wonder, what else can I learn to do again?

A few days later, I decided to test my new walking ability by walking faster. Initially it was awkward. Just like Forrest Gump, I muttered sarcastically as I recalled the movie. Then, Hey! I wonder . . . ? So, I tried breaking into a jog. It didn’t go very well, and I was happy no one witnessed it. But a few minutes later I tried again, and again and again. After two hours of experimenting with my version of jogging and very gradually improving, I managed to do a mini–Forrest Gump jogging out of his leg braces.

Alternating between walking and repeated jogging attempts, I went from an out-of-control, stumbling, what is that you’re trying to do? type of mess to feeling something that actually resembled jogging. For two miles, I alternated between walking and jogging attempts. Then, as I rounded the corner onto the street leading back to the house, I decided to try to go longer. The house was approximately an eighth of a mile away, and I jogged my jog all of it.

It was exhilarating. I had just done another thing I’d been told I would never do again. Sweating and panting the way I did that evening had never felt so good. As I relaxed on the front porch bench drinking from my water bottle, I couldn’t help but chuckle and say out loud, Boy, they are so wrong about so many things.

I WANTED MORE

This empowered me. But other than knowing I wanted to continue to improve, I had no plan or idea for how to make that happen. My driving force was, now that I had experienced these small improvements, my eyes were opened to the possibility of reclaiming more. Was it possible, or was it simply wishful thinking? It didn’t matter. I was determined to find more.

I continued this same routine, and my stamina, abilities, and attitude continued to gradually improve. With a rediscovered invigoration from deep within, I felt myself beginning to open up to the world around me. For the first time in a very long time, I wanted some social interaction, so I went on a date. Over dinner, this new woman in my life spoke of her family and their shared interest in bike riding. I wish I could do that, but I have a balance problem that makes it next to impossible for me to ride a bike, I explained to her.

Then ride a trike, she said.

No, I am not ready to be caught on an adult tricycle, I said, chuckling.

I didn’t say tricycle, she laughed. "I said you could ride a trike." She went on to explain the difference between the two. I was immediately intrigued with the concept.

The next day I did an online search and found a large bike shop that had many trikes on display, and then days later, drove 120 miles to see them. While there, I test-rode two that tweaked my interest, and that set the hook. I bought a recumbent trike that was hinged in the middle of the frame. Then, I folded it up, put it in the car, and drove home.

Once seated on the trike, I found that riding it was easy and enjoyable, and I had plenty of places I could go with it. Soon I was riding an average of ten or more miles in the evening at least four days a week.

The seat is about six inches off the pavement. This makes it difficult for someone with movement and balance problems to get on and off. You have to move into a low squat to sit on the seat, and then stand up from this very low point.

Coming up out of a low squat to stand after riding a long distance was the bigger challenge. Both issues forced me to work on both my balance and my leg strength. Yes, according to some friends, I cheated getting on and off, but I didn’t care. It was necessary. I parked the trike near something large and stable that I could hold on to, to help me stabilize during the transition. Much later, I developed the skills to sometimes do it without holding on to anything for support.

When I was seated on the trike, its stability totally released me from my disorder’s limitations. This allowed me to do normal activities with people with normal abilities. I was comfortable and relaxed in the reclining seat with hands on the hand grips, where all the steering, braking, and shifting controls are located. My legs extended out to the front, and my shoes locked into the pedals, ensuring that my feet remained safely on them. The trike provided me with a new freedom of independent mobility.

On the trike, I felt normal. After riding it for two months, I also felt more stable while standing and walking. This was encouraging to feel, but it was more special to hear friends and family say they could see that I was more stable. The trike provided me with a safe mode of exercise, brought me socialization, and forced me to address personal balance and strength issues. I felt much better about myself than I had in years. I had given myself permission to have fun again. I wanted more.

THE DANCE

Enter Jim, an employee and friend of my brother. Another person and another opportunity at precisely the right time. As we talked in the office four months after I had first met him, Jim commented on the improvements I had made in my movements. He went on to suggest that I might improve them even more by taking ballroom dance lessons with an instructor he knew.

Do what?! I heard myself blurt out. He laughed and repeated that learning some dance moves might help me to further improve my movements.

It would be great to have that ability, Jim, I said, but I have never, ever had any ability like that. And now, this disorder I have makes it impossible for me. I’m just happy that I was able to improve my walking ability. But me, dancing with my coordination problems? That is something I could only dream of doing.

Secretly, though, I was intrigued by his suggestion. However, the underlying reality of my disorder is that it does impose limits, and because of that, I will always be a clumsy person with a degenerative neurological disorder. Therefore, with my clumsy reality, dancing was definitely not something I could do, nor would I embarrass myself by trying. I brushed it off as a waste of time and money, envious of those who had the natural ability to enjoy it.

Jim was persistent. Over the next two months, he often reminded me that I should at least give it a try. Finally, he caught me on a day when my defenses were down, and I reluctantly agreed to at least go to a local singles dance that coming weekend, to see some of it for myself.

Sunday evening, as promised, I pulled into the parking lot an hour after the dance had started. The parking lot was nearly full, and the only empty spaces were far from the building. As I walked toward the building, the thought What am I doing here? kept flashing through my mind. As I pulled the outer door open, the faint music I heard outside became louder. Following the increasing sound, I entered an enormous room where music filled the air and actively moving people thronged the large dance floor. Their faces beaming with happiness, flowing and mingling couples danced so easily to the music.

Finally, well inside the room and leaning against a distant wall, I stood there feeling completely out of my comfort zone. People kept moving around me, so I edged farther down the wall and farther away from the dance floor. Taking my place as the token wallflower with no dancing ability, I pressed my back securely against that wall to hide any clumsiness, and with great envy, watched those lucky people. I absorbed their collective movements, my eyes fixed with awe on the freedom they displayed, gliding about so easily with fluidity and grace. They were having so much fun with their natural ability, doing something I could not.

I would give the world to be able to do that, I whispered to myself.

It was wonderful to watch them, yet it was also painful. It reminded me once again of everything my disorder had taken from me. Again, I was looking through a window into a world I could not enter and would never be a part of. I gazed into a dream of desire and longing, absorbing their freedom and aching for my own. Mesmerized, I jealously watched for thirty minutes, until I could stay no longer. It was obvious why they loved doing this, and it was for that very reason I had to leave. Watching them enjoying the pleasures of life that had been stripped away from me had reached a painful threshold. Their overwhelming joy had revived and darkened a depressing reminder of my own limitations.

To escape and return to my world, I had to walk past the length of the dance floor. At the same time, I also had to wind my way through an area that was crowded with small tables and moving and standing people. But, I had no choice. I had to leave, and I had mapped my route. Then, very fortunately, seconds after I began walking toward the obstacles of people and tables, a popular dance song began. That created a stampede of people rushing to the dance floor. I stopped, they scurried, and in a moment my path to the door was clear.

They turned every inch of the dance floor into a mass of freely moving and smiling people, once again showing me what I could never have. I definitely do not belong here, I whispered with a deep sigh. At the door, I stopped and turned back for a last, envious look, to marvel at the lucky people.

The dance floor was so overcrowded that two people were dancing on the carpet at the distant corner of it. They were very good, and that forced me to pause a few moments longer to watch them. Their movements coordinated as they mirrored each other in movement. Being away from the others and more readily seen highlighted their dancing and made it more intriguing, forcing me to step back into the room to watch them a little longer.

What the—? I heard myself exclaim. I moved closer. It was Jim. I knew him only from a business perspective and would never have guessed he had this ability I was now witnessing. His suggestion that I try dance lessons had been so obscure to me that I had never taken the opportunity to actually discuss why. Now it was crystal clear why he had been suggesting I try it. He was living the results of the lessons he had taken. Yet, I had to be realistic with myself. He can do that, I thought reluctantly, because he doesn’t have my problem.

MY TURN, MY CHANCE

I could not shake my thoughts about what I had witnessed that Sunday night, and then days later I decided I had to know. Could it help me—even just a little? I made the call and set up the appointment. Two weeks later, I walked into the dance instructor’s ballroom dance studio. It was the first dance studio I had ever been in. I wanted to be here, but I also knew I should not be.

Walking into the studio, I took a chance on a hope, a hunch, and a prayer that something good might possibly come of this. To have the ability to experience even a small piece of what I had witnessed—I cherished the thought. Maybe, just maybe I could have a small piece of it. That desire pushed me forward, while the ache in my gut continually reminded me of the limitations of my reality, that this sort of dream would never happen in my lifetime with this damned disorder.

The initial evaluation with Camelle, the instructor, was scheduled for thirty minutes. The physician in me used at least half of that time explaining what I physically could not do and why I couldn’t do it. I began with, I am not here to learn how to dance. I cannot dance, because part of my brain is shrinking. I have a neurological condition that causes my movements to be uncoordinated, and my movements will only continue to get worse as this disorder progresses. My only hope in coming here is that you can teach me something that will help me to improve my balance and stability, and possibly help me restore some fluidity to my movements. I wish it could be more, but realistically that is about all I can ever hope for.

Okay, she said rather cheerfully as she took my hand in hers. Now walk with me around the dance floor. For the next five minutes, she walked me over here and then over there. Do this. Now try this. Follow me, and now walk over that way by yourself. Good, she said. Now sit with me at the table so we can talk about things. As we sat on opposite sides of a small table in the front of the studio, all was silent. Then she looked me directly in the eyes, and without batting an eyelash or changing her gaze, she said, I can teach you to dance.

I was speechless as I tried to make sense of this. My mind was filled with the thought that she obviously had not heard anything I had just said to her about my disorder, that thing happening in my brain that made it impossible for me to dance. Okay. Where was the catch? With dazed and confusing thoughts, I waited for it, closely watching her eyes and face for the clue that this was a con, because I knew it had to be coming.

But it never came. She changed nothing. She held her gaze. Then I heard myself sheepishly ask, What?

Without changing her look of conviction, she repeated, I can teach you to dance.

But I have a degenerative disorder that sometimes makes it difficult for me even to walk, I insisted.

"But you can walk, she said. And that means you also have the ability to learn how to dance. If you can walk, I can teach you to dance. That is what I know," she explained without waver or pause.

Doubts whirled through my mind. Could it be true? Maybe her definition of what my dancing ability could possibly be was a very limited one. It would not be real dancing, like the people I had watched; just kind of dancing in a disabled way. Yes, that would be better than what I could do at that moment, but could she really mean dancing dancing, like a normal person? I . . .

"No! Stop being foolish, I told myself. That will never happen. I do not have the ability because my disorder won’t allow it." But she was still looking at me—and I at her, waiting for her to reveal her doubt. Long seconds passed. Was she serious?

For the next few minutes, I listened as Camelle explained what the process would be if I wanted to work with her. She admitted that she knew nothing about my disorder, but she had occasionally worked with people with other types of physical disabilities. As she spoke, I continued to study her posture and expressions for any hint that she was being less than genuine, but she remained sincere in every way. I saw nothing to suggest otherwise. Then the moment came when I had to choose. Would I come back and give her a chance to prove what she had just spoken of? It was time to put money on the table or walk away.

Honestly, sitting at that table, what I was questioning was, would I allow myself to try to prove these things possible? Could I again remove myself from the negative and medical side of my mind to attempt something so different, something the academic and professional side of my mind still scoffed at and called ridiculous? The other part of me said I had to try. I had to know. She was convincing, and I had seen Jim on the dance floor. This was where he had learned much of it. Could it be possible that I could learn to have a small fraction of that ability? If so, that would be amazing.

I handed her the money, agreeing to take an introductory package of lessons beginning the following week. I was excited, optimistic, and encouraged, while still cautious and pragmatically doubtful.

In the days leading up to the first lesson, I repeatedly flipped back and forth among many conflicting thoughts of doubt and expectation. "I know what I have, and she does not. I know what this disorder will allow me to do, and I know what it will not allow me to do. I have bruises and healed bones to prove it. She simply does not understand my reality. Maybe I shouldn’t go back? But I’ve already paid her. Okay, okay, I will go. Then I’ll be able to honestly say I tried when things don’t work out as she said they would."

It was 2:45 p.m. on a sun-filled-blue-sky Tuesday when I again drove into the studio parking lot. Camelle had told me to bring my leather-bottomed shoes, and they waited in their box on the passenger seat beside me. I was having another mildly bad movement day, so I took extra time getting out of the car. Standing beside the car to steady myself, I looked down at the box. My dancing shoes?

This is not a good day to be starting dance lessons, I thought. But at least it will show her more of what I’m dealing with. Looking up before walking toward the door, I read the studio sign on top of the building. Images of the lucky real dancers filled my mind. Images among which I had no place.

As I pulled the studio door open, the afternoon summer sun illuminated the center of the dance floor and cast my long shadow upon it. Camelle was teaching Don, the only other person in the studio. I intently watched them as I sat in the same chair as before and changed into my dancing shoes. Then it was my turn.

She started the first lesson by showing me a basic fox-trot box step pattern, the same one she said every new student begins with.

This is a simple sequence where first the left foot moves straight forward, then the right foot comes forward and over to the right, and then you move the left foot next to the right foot. The other half is, move the right foot straight back, then the left foot moves straight back and over to the left, and then you move the right foot next to the left foot. That is all there is. Then you simply repeat it over and over again, she explained as she easily demonstrated the footwork.

I was stiff, clumsy, and unstable, and that simple pattern proved very difficult for me to do. I tipped, swayed, and stumbled with every attempt. Camelle held my hand to steady me. It was embarrassing, humiliating, and frustrating. I reminded her, I tried to tell you I would not be able to do this.

Still, she continued pushing me beyond my negativity and doubt, as if she was not listening to me. So, I continued to try, and eventually there was a small bit of progress. It was a very small amount, and it was very slow in coming. But by the end of all four of my introductory lessons, I could honestly feel and see a small amount of difference. The simple box step pattern was getting just a bit easier to do, and I was also beginning to feel comfortable with being at the studio. That was because it was empty of other people when I was there. This was the little spark that allowed me to take another leap of faith. I signed up for a larger package of lessons. This experience and outcome were totally unexpected. I now had pleasant expectations of the lessons as small improvements came in my balance and stability, but I would also need to do a great deal more work on my own. Gladly and absolutely yes. These beginning small improvements justified the expense and any required effort. No, I still did not think I would ever be a dancer like the normal people. But I could dream.

For the next four months, I went to the studio twice a week for fifty-minute private lessons. During that time, it was only the two of us in the studio. But Camelle insisted that I needed more exposure, so after a great deal of prodding and encouragement from her, I risked attending group lessons twice a week in the evenings. This called for another huge leap of faith.

My dance abilities were still very limited, making the thought of being there with other people who had natural ability very embarrassing. How could I compete, fit in, or feel comfortable with them watching and judging me? I was very reluctant. But she insisted I should join in.

I was intimidated. I isolated myself to hide as much of my impairment as possible during the group lessons. I positioned myself at the far end of the men’s row, because that put me in the back corner of the studio. There, I had two walls when I needed them, and there was only one person beside me to my left whom I might interfere with. I was openly hiding in the corner, as far away from the center of attention as I could get.

I found some comfort in the corner, attempting to hide my many mistakes. But in reality, it didn’t take much for everyone to see everyone else. Dance studio walls are typically lined with mirrors—mirrors that allow you to see even more of everyone, including yourself. I did not like seeing me. I did not need to face that reminder of how my awkward and guarded movements contrasted so sharply with the relaxed movements of the other people. Just feeling it was embarrassment enough.

It took time for them to come to know me, to understand why my movements were clumsy and awkward. Eventually, when I felt accepted by them, my place and time in the studio changed quickly. Their positive attitudes toward what I was working to accomplish gave me the permission and encouragement I needed to be there with them, to stay, and to return. They accepted my difference. They shared their own difficulties on and off the dance floor. Collectively, they were there to have fun, to learn dance steps and movements, and also to deal with some situation or difficulty within their own lives. I had more in common with them than not.

Because of the group’s collective acceptance, I quickly gained a very special family of positive-minded friends. They demonstrated their acceptance of me having a rightful place in the studio and sharing the dance floor with them. This allowed many of my apprehensions to fade. But I still continued struggling with giving myself that same acceptance.

There were so many awkward times and moments adjusting to this new world. For example, during group lessons, everyone rotates partners while practicing the dance patterns, and every new partner became a new challenge for me. Every woman’s movements varied according to her dancing ability, and few of them came close to the smoothness and timing of my instructor’s movements. Given the difficulties I had in controlling my movements, when my dancing partner did not move where, when, or how I expected she would move, my movements became awkward. My partner’s unexpected motion, or failure to move at all, caused me to stiffen as I attempted to compensate for the change, and it happened more often when we were in a close dance hold.

Their unexpected movements or lack of movement easily pulled or pushed me off balance. This called for constant postural adjustments, and I always had to devote too much time in my head to trying to remember the dance steps. This invariably caused me to be out of step with the music or the timing the instructor was calling out. I struggled with conflicting thoughts of how well or badly I thought I was doing. Frequently, I complained about how difficult this was for me in comparison with the others, and how I couldn’t hear the music for the constant thinking I was forced to do. But I always went back. The positives of the psychological and social experience, combined with the small physical improvements that kept coming to my movements, always pulled me back another day.

ACCEPTANCE

My acceptance of myself came when I personally felt and knew I had a rightful place within "their dancing world," and it happened much sooner than I expected. The regulars at the studio welcomed me and were very supportive. That they knew about my disorder helped a great deal and was exactly the opposite of what I had routinely shared with people in the past. Gradually, after months of regular attendance of private and group lessons, with the other students’ continued support, I was able to begin letting my internal guard down. Gradually, I learned it was okay for me to relax, both mentally and physically, in the group. Psychologically, their support and friendship were a blessing.

But still, repeatedly seeing their relative ease of learning the same dance patterns and movements that I struggled with continued to fuel the brutal reminder of my unique reality. I could be with them, but I would only have a taste of the ability they enjoyed. I was riding a roller coaster through emotional highs and lows of joy and sorrow. My dancing friends became a very, very close network that I considered family, and sharing my truth of these things with them helped a great deal.

It was such a fantastic experience. I became addicted to being at the studio for lessons and the dancing after the group lessons, and it was rare for me to miss one. The studio was my happy place. My movements were improving—another contradiction to the medical understanding of my disorder’s predicted outcomes.

This experience challenged me in ways I otherwise would never have imagined. It forced me to reconsider my movements from a very practical-use perspective, and a question continually bounced around in my mind as I studied the movements of others. What is it I need to do to come closer to having the movement ability they enjoy so easily? I set about to find that answer by researching multiple movement disciplines and reading multiple texts. I found nothing. Everything spoke only of an academic or theoretical understanding of could be or should be. None of it broke down the basics of movement. There were no specifics to be found as to how our movements actually work. Nothing in my research in any discipline offered anything close to: This is what we do, and this is how it works.

There is so much we think we know about so many things, when, in fact, too often we actually know very little about what we think we know. We too often convince ourselves and others that our theories and speculations are correct, because this is what our