Another Brick in The Wall

Within seconds of being led to our seats, the stadium erupted into cheers as Pink Floyd bassist Roger Waters walked onto the stage. As I found my seat in the first row, the loud cracking sounds of fireworks rocked the stage from side to side, and the heat and intense brightness forced me to shield my face with my hands. It looked like the stage had exploded. The legendary rock star took center stage and raised both arms in the air and the crowd again burst into cheers and screams. It was an incredible feeling to be part of this energy.

The lights dimmed as Waters was handed his bass guitar. Suddenly, from the gigantic speakers, the ominous sound of helicopters emerged, their deafening rotor blades vibrating through the crowd, so realistic, as if hovering right above us, casting bright, menacing searchlights upon the audience.  In the background a telephone started ringing, and ringing, hopelessly. The crowd roared as the familiar guitar rift began, and became the opening song for the night, their most famous, Another Brick in The Wall.

Naturally, I went back in time to when I was 16 years old when the song was first released.  As children appeared on the stage for the chorus, I found myself, fist clenched and held high, singing as loudly as I could:

We don’t need no education,

We don’t need no thought control,

No dark sarcasm in the classroom,

Teacher, leave them kids alone…

Of course, the song took me back to some of my dark and desperate boarding school years in England, from the ages of 11 to 17 years old.  Back then the song was like an anthem to me. I was attending a boarding school that was void of anything that was love and kindness. I was 7,500 miles away from my home and family in Malaysia. In those days, we didn’t have the luxury of international calls. I went for months without speaking to my parents and family, and often wondered if they were all still alive. I used to wait desperately for letters to come in the mail from my mother.  My father rarely wrote, just the odd postcard from his business trips. The telephone ringing reminded me of the deep anguish that I felt, thinking that even if I could call home, what if no one answered? It was uncanny how close those memories were still to me at that moment.

The show had started with the band in full view and with each song a wall of cardboard bricks was gradually being built between the band and the audience, allowing only a few gaps for the crowd to see through. By the second half of the show a complete wall stood, 40 feet high, separating the audience from the band performing.

I attended a convent in the English countryside that was run by Canadian catholic nuns. As I sang the words I remembered how harsh and uncaring the teaching nuns were to us. I was reminded of the unwelcoming, depressing conditions of the boarding house, which we would come back to after a day of school, and the coldness of the nuns who ran it. The nuns were trusted to act as our surrogate parents, our mentors, supposed to be responsible to care for us with love, compassion, encouragement and kindness. Instead, a dark and vacant side of human nature was revealed, where our essential worth as children was undermined and damaged. The way we were all treated and the injustices imposed upon us forced me into being rebellious and antiestablishment during my youth.

Waters was against the injustices that he experienced in boarding school himself, which was formal, controlling and rigid. It was a system that forced kids to loose their individuality and to conform. Another Brick in The Wall became a symbolic song against power over an individual, whether it be education, government or religion.

Waters originally thought up the concept of building a wall across the stage to express the feelings of alienation he felt from the audience. Eventually, the wall not only symbolized the separation of the band from the audience but also separation between east and west, rich and poor, black and white, powerful and weak.

To me, the bricks in the wall are like obstacles. They mount up and become walls that separate us from one another. My experiences collected from boarding school have molded me into who I am today, and especially the kind of mother I wanted to be for my children. I am to my children what was missing from my formative years.

A kaleidoscope of colors and fast images were projected onto the wall as the band, who had temporarily reassembled in front of it, quickly cleared the stage. It was toward the middle of the second half when security asked all of us in the front row to stand back.  Waters, standing on a raised platform, took on the persona of a fascist dictator performing at concerts similar to neo-Nazi rallies, and ordered and aroused the crowd as everyone chanted:

Tear down the wall,

Tear down the wall,

Tear down the wall...

The wall, drenched in colors of red and orange, began crumbling from the top, accompanied by sounds of explosions, and dramatically, the whole wall fell to the ground with pieces of cardboard strewn about like wreckage all over the stage and floor. Stage handlers who were shielding the first row from being hit quickly maneuvered the pieces to the sides of the stage. The tearing down of the wall felt historical.

Waters came out onto the stage for the last time, a personable and softly spoken, gentle man, choosing his words carefully and meaningfully, he thanked his fans, and talked about his journey and how he had changed over the last 30 years. I reflected too, upon my own journey and how I have changed.

I reflected on how I battled through all the bricks in my own wall, particularly the emotional trauma of my boarding school years. Having those days now safely behind me, I have stumbled upon my most challenging of all obstacles, that being the diagnosis of my own child with Duchenne muscular dystrophy. I share the same hope for my son that Waters had that evening, as he spoke about the oneness of people, and the need for us all to break down the walls that differentiate and separate.

As the charged crowd stood clapping, again the stadium erupted into cheers as Pink Floyd bassist Roger Waters walked off the stage, ending his last performance ever in the United States. 

Boy With The Blue Guitar

November 2002

(I wrote this song a few years ago when my son Dusty could still play the guitar. Today, just holding a spoon to feed himself is heavy for him).

I can hold a thousand grains of sand inside my hand

Why are all my crazy thoughts so hard to understand

I would walk ten thousand miles in the pouring rain

Just to see you smiling once again

Chorus

It’s funny how the real things are always about love

The answers are within ourselves, not in the stars above

Just ask the boy with the blue guitar

Just ask the boy with the blues guitar

I can see a thousand stars when you’re lying by my side

Nothing really matters here when there’s nothing left to hide

Confused by all those city streets reaching out to escape the haze

Melancholy surrenders to the sunset’s fiery blaze

Chorus

It’s funny how the real things are always about love

The answers are within ourselves, not in the stars above

Just ask the boy with the blue guitar

Just ask the boy with the blues guitar

(Interlude)

I can hear a thousand waves inside the smallest shell

When you’re mind is full of dreams there are only dreams to tell

I find myself at crossroads weary and dismayed

It is in my uncertainty that you make certainty the way

Chorus 

It’s funny how the real things are always about love

The answers are within ourselves, not in the stars above

Just ask the boy with the blue guitar

Just ask the boy with the blues guitar

November 2010

A Doctor's Visit

Recently I was in my doctor’s office for my annual check up. I sat patiently in the waiting-room looking around at the pictures of his family positioned in large frames across the walls, and noticing how over the years his family of five children has grown to include husbands, wives and grandchildren. I was then called into another smaller room, where I waited for a few moments before the doctor knocked on the door and walked in. He greeted me warmly with a handshake and a smile, and touched my shoulder lightly as he sat down opposite me.

Excitedly, I told the doctor that my first-born was going to be 18 in a few weeks. We reflected on how quickly the time had passed as we proceeded to compress the events of the past years into a matter of minutes.

He was my doctor throughout my three pregnancies. He was a lucky find, a kind and softly spoken man with a calm and peaceful nature. I was just six weeks pregnant when I walked into his office those 18 years ago.

Being pregnant and my journey into motherhood, was one of the most fulfilling and rewarding experiences of my life. I couldn’t wait for the routine doctor visits to hear how much my baby was growing, and as the visits became more frequent, the doctor became more of a mentor to me.

I knew I was in good hands. He was able to ease all of my concerns and worries as the due date drew nearer. I was still completing my master’s degree at the time, and was actually preparing to go to an evening class the day the baby was born. It was 3:00 p.m. when labor began. We got to the hospital at about 5:00 p.m. The doctor showed up, and the team was complete. Just two hours later, at 6:51 p.m., my son was born.

As we continued to talk about my health and life, the doctor asked how my son was doing.  My eyes filled with tears as I spoke about the progression of his Duchenne muscular dystrophy since I last saw him a year ago. In his kind and soft way, he again eased my concerns and worries. He continued being present to what I was saying.

The doctor really has been part of this Duchenne journey. Not only did he bring my son safely into this world, but he has looked after my health throughout all my pregnancies and follow up visits over the last 18 years. In this way he has been more than just my doctor but also a spiritual teacher and friend.

Pregnancies and babies and motherhood are life-changing events, and to come back every year to the same doctor to discuss and ponder these events is rewarding. Life goes fast, and these doctor visits have allowed me to stop and reflect and share with someone who is genuinely interested.  After all, I put all my trust and faith in him during that delivery.

Most of all he understands. He understands the emotional investment we have in our children. As a doctor, he plays a major role in bringing babies into the world, present to the happiness and joy, and also to the sadness and devastation. The delivery experience can be as hectic and complicated as it is calm and peaceful.

He gathered his papers as we neared the end of our appointment. I noticed he was much grayer than last year, and nearly bald, but still the kind and calm man he always was. As he stood up and shook my hand, he looked me knowingly in the eye and smiled just like he did the very moment he handed me my perfect son, seconds after he delivered him, 18 years ago.

The Dark Cloud of Duchenne

I once read that life isn’t about waiting for the storm to pass but learning how to dance in the rain.

The diagnosis of Duchenne muscular dystrophy felt like a sharp sword that stabbed and shattered my world.

After that moment, a dark cloud hovered above my head, and would never leave. Every time I looked up, there it was, reminding me of the perils that lay before me.  It was a frightening time, to think that my perfect, sweet child of six who I loved with all my heart, was going to progressively get weaker, until he could no longer walk or use his arms. He would lose his ability to eat or breathe on his own, and on top of all that, his life expectancy was put at age 20, if he was lucky to live that long. I felt an anguish that only a mother could understand, and my world stopped.

How was I to navigate through this mess? There was no cure for my son, and no treatments. What was this disease? What did it all mean?  What about my other children? The dark cloud was all around me. That was 11 years ago.

To say there have been many challenges over the years is clearly an understatement. My earlier pursuits of undergraduate and graduate degrees were nothing compared to the task at hand. Not only did my husband and I have to learn about the complexities of Duchenne, but we also had to become experts in a short amount of time in order to fully understand and comprehend this disease if we were to save our son.

As we embarked upon this endeavor we would learn the language of doctors and specialists, and enter a world of genetics: DNA, RNA, dystrophin, utrophin. We conversed with scientists and discussed with neurologists, orthopedists, cardiologists, and pulmonologists, and even pharmaceutical companies. The list went on and on.

We had to educate family, friends, teachers, schools, physical therapists, and attend conferences. We became lobbyists, organized fundraisers, and served on charities. Eventually we would have to research wheelchairs and adaptive technologies, and later assistive devices such as coughing and breathing machines.

Over the years difficult decisions were made regarding drug treatments. The side effects of some of the drugs, such as cortico-steroids, were dramatic. Another, gentamycin, also generated toxic side effects. But there was little else.

Further along we learnt about a small molecule drug, and participated in a very promising drug trial. My son was poked and biopsied, and became a guinea pig for the generations to come after him. It turned out that for 18 months he was on a dose that was actually ineffective. The trial stopped temporarily.

Throughout, the dark cloud remained. My son was getting weaker, and despite all we were doing we had little choice but slowly to surrender to the relentless nature of Duchenne, which was steadily stealing his life away.

Although there have been huge advances with the unveiling of new drug trials, and many scientists coming forward with renewed optimism and hope, today there is still no cure for my son, and no treatments. Despite this new tide of optimism, the obscured reality is that our older boys are loosing their lives to Duchenne.

The dark cloud became darkest about a year ago, when my son, then 17, had a routine visit to his orthopedist. After an examination of his back and an x-ray, the doctor informed   us that his scoliosis had suddenly worsened compared to a few months ago. Because of the curve in his spine, his chest was being rotated and as a result was compressing the space available for the lungs and heart. 

The doctor told us matter-of-factly that my son would need to have two rods inserted along his spine, routinely called spinal-rod surgery.

·      After making the incision, the muscles are then stripped up off the spine to allow the surgeon access to the bony elements in the spine.

·      The spine is then instrumented (screws are inserted) and the rods are used to reduce the amount of the curvature.

He said that during the six hour-long surgery he would require a blood transfusion, since there would be much blood loss due to the incision along the back as well as in the bones. But he reminded us that surgery would give him a chance of living longer. He said we needed to act quickly due to my son’s decreasing lung function, which is detrimental during surgery and recovery. I could swear the blood left my veins.  I felt so desolate.

After a visit to the pulmonologist, the go ahead was given. My son’s lung capacity was at 40 percent. Although it is preferable to do this type of surgery when they are younger and stronger, the doctor said if we act swiftly the surgery is still safe. He lectured not to wait too long, as lung capacity will get too low, and then the surgery will be more risky.  He added that he couldn’t guarantee anything.

The doctor’s words echoed loudly through my mind, my thoughts in a spiral. The idea of spinal-rod surgery induced a feeling of desperation and fear, the fear of my son possibly dying through this ordeal, and possibly dying if we didn’t go through with it. And the recovery process, what about that? I didn’t want to lose him. There was no guarantee he would make it. We were at a crossroad, an impossible predicament.

The bottom line was the horrific realization that we may lose our son sooner than we thought. We were damned if we did and damned if we didn’t. How could I make such a decision?

For three months, my mind and thoughts were in turmoil and the dark cloud followed me into my dreams. I was supposed to make a decision. How? I had so much advice designed to help me through my dilemma: “Pray”, they said,   “Through God you will know”,  “It is God’s will”,  “I will support you”,  “It will be fine”,  “The right answer will come to you”,  “Reflect”,  “I know a good priest”,  “A swami”, “A monk”, “You must do it”, “You must not do it”.

I searched through the chambers of my mind for answers and solutions. It was the most difficult time for me, the most difficult so far on this Duchenne journey. I was now facing head on the ugly reality of this cruel disease.

The only answer that came was nothing. Did this mean no?  Had the universe responded with a no? 

After those months of what felt like an eclipse, I woke up one morning, and drew open the curtains and looked outside. I noticed the colors of nature, the sunshine. I looked up at the blue sky. I felt free. The dark cloud had gone.

I felt as if a weight had been lifted off me. I felt liberated although nothing had really changed. I realized that the burden of the decision had deeply affected my happiness, my very nature. I acknowledged my internal conflict and let it go. I let all my thoughts go. I decided that I didn’t want to fight and resist anymore with this disease. These were precious days and I still had my son. My perfect, sweet child of 17 was here with me, to touch, to hug, to love. Nothing was going to get in the way.

We never did have the spinal-rod surgery. My son is 18 in a few months. We are in the so-called “late stages” of Duchenne.

I was recently at a back to school night for my younger son, where parents and teachers get to meet and connect. I noticed during the five minute interval between classrooms, how the crowd of parents rushed along, headstrong, serious and focused and impersonal, not even stopping to say “hello”.

And then I wondered about the world of students, how in contrast they would amble along, chatting and laughing, carefree, drifting from classroom to classroom.

I thought about my son with Duchenne, how he has missed much of this experience since he is home schooled, and how he may appear as an outsider. I reflected on his positive outlook, his radiance, and his mind so full of ideas and dreams. As I continue to navigate through this sea of uncertainty, I realize that I need to steer a less rigid course and to adopt a less serious way of thinking, and to enjoy the journey rather than worry about what comes next. After all, the future is something I have little control over.

I stood somewhere in between the two worlds that evening of focused parents and carefree students. I stopped amidst the flow of the parents hurrying past me. I opened my arms wide, as if feeling for raindrops. Even though the dark cloud had gone, there were still going to be rainy days, there were still tough days ahead.  But I had a renewed lightness of being. At that moment, I realized that through my journey with Duchenne, I really had learned to dance in the rain.

It's Your Turn

It was my son’s first driving lesson. I stood and watched from the driveway as he carefully pulled away from the curb, his instructor next to him equipped with an emergency brake pedal. I was excited for him and as they disappeared around the corner, I couldn’t help but reflect upon my first driving lesson, and how I remembered it like yesterday.

As a teenager, learning to drive was one of the most exciting things I experienced. Once I got my license I used to enjoy the freedom of exploring, and would happily zoom along the narrow, winding country roads of Kent, and also through the tropical rain showers along the unpaved, potholed roads of Sabah. It was thrilling. It was an adventure.

I used to enjoy conversations that revolved around cars, V6 engines, torque, pistons, spark plugs and so on. Not that I understood the intricacies of car mechanics, but I knew about the best performing cars of the day. I drove my fair share of cars that were exciting to me.

The most exciting car I drove was when I purchased my 1966 Ford Mustang, 20 years ago. The car’s freshly waxed, Cherry Red paint glistened in the Californian sunshine, and its emblem, a shiny chrome galloping pony across the grill, leaped out at me, as if beckoning me to buy it. I knew that car was meant for me. Its engine roared and sounded powerful and rugged.

Every time I drove that car, I thought about the galloping mustang, with its mane and tail flying in the wind. The Mustang accompanied me on many an adventurous road trip north, south and from coast to coast across the United States.

I thought about the adventures in store for my son, as he embarked on his series of driving lessons.

A few days later, my son shared with me some difficulties he was having staying focused during his driving lessons. He asked me if I had any tips. That evening, I challenged him to a game of chess.

As we sat down across from each other, we set up the chess pieces on the board. I referred to my knight as a galloping pony. My son played white. As he moved his pawn forward I said to him that in many ways chess was a lot like driving. Chess has rules just like driving. In chess, you need to be focused, aware, accurate and decisive, just like driving. The pieces on the board, I continued, were like the cars on the road, unpredictable. One needs to be razor sharp at all times. One small error can be fatal.

I observed my son throughout the game and saw him think, analyze and forward plan his strategy, in a measured, calm and objective way. I suddenly realized he was gaining an upper hand in the game. After the constant cross checking of pieces and problem solving, an intricate game emerged where the pieces on the board appeared locked in. The game became intense but exciting, just like driving.

My queen swept across the board and took his bishop. Intentionally, he put my king in check. I maneuvered my king to the corner square. With precision, he took my galloping pony. He won the game that evening.

After my son’s next driving lesson, he said with confidence how he felt more comfortable, aware and focused on the road this time. He added that he has started to really enjoy driving.

Under a large light green, faded cover, in a garage, sits that old Mustang raring to go. It is still as shiny and sparkling as it was that first day I set my eyes on it. The galloping chrome emblem still leaps out at me. I have kept it as a gift for my son to drive. Now, it is his turn. It is his adventure to have.

A Tale of Two Clock Towers

My neck ached as I stood gazing up at the Clock Tower, mesmerized by all the thoughts that were going through my mind. In 1859, during the heyday of the British Empire, this now famous icon was completed.

My thoughts were interrupted by its loud, forceful, grand chime.  Its sound vibrated through my body, from the top of my head to my toes. The noise from the nearby buses, motorbikes and cars distracted me for a moment as I noticed people pushing and bumping into me as they frantically looked up, not wanting to miss a single chime.

Again I drifted off to a historical time when Britain expanded and colonized much of the world. To imagine, during the Second World War, that despite the heavy bombing during the Blitz, when London was bombed for 76 consecutive days, the Clock Tower survived with little damage, and Big Ben’s bell rang accurately throughout.

Big Ben’s chimes would be heard in living rooms around the world during that time, through the BBC World Service, sounding loud and clear that Britain had not been defeated.

My mother was 11-years-old during the Blitz, and she recalls how every evening, her family would assemble around the radio, awaiting the six o’clock news.  She reflects on how inspired and patriotic she felt upon hearing Big Ben’s comforting, booming chimes coming through the radio before the news report.

My father reflects upon that time too, and on another clock tower, a clock tower literally on the other side of the world.

In the late 1800’s, the British North Borneo Company began to establish colonies throughout North Borneo. They created Jesselton, a main harbor and port. In 1904, the Atkinson Clock Tower was built in memory of North Borneo’s first district officer, George Atkinson. It sat up on a hill, close to the shoreline, and served as a beacon for ships.

 

My father was born and raised in North Borneo.  He was one of 14 children. During the Second World War, Borneo was engulfed in conflict for three years, marked by destruction, pain, humiliation and suffering. As a result, Jesselton was destroyed, almost flattened, except for three structures, the Atkinson Clock Tower being one of them.

 

The Japanese occupation was a harsh time for my father. Both his father and brother were falsely accused as spies, and imprisoned.  It was to be the last time my father would see either of them again. He was only 15.

My father recalls the comings and goings of Japanese aircraft overhead, and the distant sounds of bombs dropped. A few times, as the bombers got closer, he remembers how he had to run and hide inside the narrow ditches on both sides of a nearby field, close to the Atkinson Clock Tower. It wasn’t just the bombs he had to dodge but also the bullets from the machine guns that fired out relentlessly from these low flying planes. There have been stories of many who actually hid inside the Clock Tower itself.

 

After the war, The British Crown rebuilt Jesselton as the capital city of North Borneo. (After independence in 1963, the name changed to Kota Kinabalu).

 

The town grew into a modernized city. One does not always notice the Clock Tower these days.  It sits nestled amongst trees, and has been made into a heritage site. It is quite a distance from the shoreline now, as a result of extensive land reclamation and considerable development.

 

But nevertheless, there it stands, as a legacy, as a reminder of all that has happened.  Like Big Ben, the Atkinson Clock Tower, although not as famous or as glamorous, has stood the test of time. It has witnessed the rise and the fall of the British Empire, the Second World War, and most importantly, the memories that are forever cherished throughout the generations.

 

These are the stories that are passed down from our grandparents and parents, of a time past, but which deserve respect and acknowledgement and preservation.

Kindness

I must admit that I know very little about American football. Having spent all my youth in Malaysia, England and Australia, I was a relative newcomer to America, and to football.  I have no excuse, however.  I have lived here for 20 years.  I realized early on that watching football is one of America’s favorite pastimes, but respectfully, I didn’t really appreciate or understand it much, and grouped it along with all things American that were foreign to me, such as Thanksgiving and Ground Hog Day.

I did try to be as thrilled and wide-eyed as my friends were as they excitedly analyzed intricate details of each game, often down to every move. I was truly excited that they were excited, because they were my friends. But the only time I was up close and personal was when I was literally close to the TV getting a book or something when a game was on.

That all changed last week.  My perspective shifted. My son was given the opportunity to meet Rick Neuheisal, the football coach for UCLA, and he was invited to watch their training. 

We arrived early to avoid the meandering mass of cars on the LA freeways. The UCLA campus had a pulse, as we hastily made our way to the entrance gate of the football field.  We quietly let ourselves in and watched from the side as the players came through for practice, huge, strong men in armor-like football gear, some hurrying, while others strolled through. It felt intimidating but only for a moment.

How strongly they contrasted with my son, as he sat in stillness. Unprompted, a towering, broad, muscular football player came up to him, and put his hand out for my son to reach. He then placed his hand in my son’s upon realizing he could not lift his hand, and crouched down next to his wheelchair. Beneath his sturdy exterior was a gentle and caring person, who took time out to say hello. This happened again and again as these gentle giants boldly came through the gate and humbly approached my son.

Coach Neuheisal was warm and friendly. He spent some time with us before he hurriedly went off to train these men, with only two days to go before the team would fly off to Texas for the much anticipated game, that America would once again stop and watch and analyze.

We eagerly watched as newcomers to the training spectacle in front of us.  When everything was broken down into maneuvers, we understood more about the game. We looked out for the players we had just met, hidden now under their robot-like head gear, having to find their numbers on the backs of their shirts as they trained gruelingly for speed, power and agility.

After a few hours, we turned away from the football practice and headed out toward the gate. I looked back one last time at the players, and will always remember that underneath their tough, strong exterior is a kindness that I will never forget as these men gave of their time to meet my son.

I will be watching the game this Saturday, with a renewed understanding and appreciation for football. This time, I will be thrilled and wide- eyed, and up close and personal.

Sunsets

I strolled along the beach this evening, and watched the sunset. I stood in awe of the spectacular explosion of nature’s most brilliant colors displayed across a canvas of sky.  As the sun sank beneath the horizon, all around me the sky changed into fiery shades of oranges and pinks and then reds and yellows. The waves quietly lapped the shore and a light warm breeze touched my face as I stood there on the soft sand, as a witness to this wonderful phenomenon.

At that moment, I remembered as a child walking along the warm tropical beaches with my father, at dusk, just as the sun was about to go down, just in time for the sunset. As we made our way to the beach, he would select a long stick from the many tossed about in the grass. Once on the beach, he would stop every now and again, and draw out multiplication tables on the sand, to help me memorize them. I was always distracted. The sunset had begun, with its incredible colors emerging, splashing themselves above and all around us. I would hold my father’s hand tightly.

There are few things that remain unchanged in life. Life brings many uncertainties. Our memories and feelings linger but we grow older, as do our parents, and our children grow up. Everything seems to change. But sunsets, they never change. You can always count on the certainty of a sunset.  Every evening, we can stand in awe of the sunset.

I watched from the beach as my father held my daughter’s hand tightly as she led him across the uneven rocks down to the beach. He stumbled slightly as he reached the sand, as he seems to lately. He walked towards me as my daughter ran off beneath a crimson sky, toward the quiet waves lapping the shore. I once again walked with my father along the sun-setting beach whilst a light warm breeze touched my face.

STS/VECTTOR Treatment

Dr Rhodes and Dr Boudreau discuss STS with Dusty

Dr. Donald Rhodes

South Texas Innovative Medicine

Review

There has been considerable interest in the Duchenne community regarding a physical therapy system known as Dynatronic STS, (the new machine is called VECTTOR), invented by Dr. Donald Rhodes, who is located in Corpus Christi, Texas. The following is a review of a visit to Dr. Rhodes and some perspective on him and his treatment.

The treatment

Dr. Rhodes has a proprietary machine that passes low frequency electrical current through nerves. He believes that varied electrode pad placement combined with differing beat frequencies allow for treatment of different ailments. The electrodes are hooked up to the strategic nerves in the feet and hands, and send electrical impulses up to the place in the back that controls the sympathetic nervous system.

Here is his working hypothesis

“STS treatments are effective due to a combination of the following aspects of the treatments: low frequency electrical current passing through long sections of nerves; electrode pad placement (including acupuncture and reflexology points); production of cyclic adenosine monophosphate; the choice of the peripheral nerves being stimulated so that there is a cross over effect in the central nervous system; leakage of action potentials from the nerves being stimulated into nerves entering the sympathetic ganglia; the quadrilateral location of the stimulation; creation of action potentials through sympathetic nerve fibers, in the peripheral nerves being stimulated; creation of action potentials in the peripheral nerves being stimulated; activation of the sodium pump in the nerves being stimulated; production of ACTH; production of dynorphins, enkephalins or beta endorphins; creation of IGF-1; and creation and/or production of circulation altering neuropeptides such as vascular intestinal polypeptide (VIP) and calcitonin gene-related peptide (CGRP).”

Dr. Rhodes and Dr. Boudreau

Dr. Rhodes is an energetic, kindly man in his early sixties. He is a podiatrist. He is passionate about his technology. He says he has seen significant improvements in his patients suffering from RSDS, a chronic pain disease, diabetes, fibromyalgia and multiple sclerosis. He is extremely confident in the treatment’s ability to also help individuals with Duchenne and Becker muscular dystrophy.  Dr. Boudreau, also a kindly man, is an orthopedic surgeon and osteopath, and they share a practice and work closely together.  They are both disillusioned with the more conventional ways of treating patients with drugs. They believe that the system does not work as well if patients are taking steroids.

Cost

Treatment is expensive due to the cost of the machine, time spent with Dr. Rhodes and Dr. Boudreau and travel and accommodation. Dr. Rhodes charges $4,500 for the STS machine and a few hundred dollars for training.

My thoughts

Basically, the STS electrodes electrically stimulate acupuncture, acupressure, and reflexology points, as well as free nerve endings and nerve trunks.  Dr Rhodes believes that by improving circulation in the body, the body heals. Growing up in an Asian country, I was exposed to eastern medicine, and familiar with what was being presented.  I believe that it provides therapeutic relief for many ailments. Dr Rhodes is taking an ancient eastern tradition and combining it with modern technology.

Dusty is the 18th patient with Duchenne or Becker who is currently using STS. He receives 80 minutes of STS/VECTTOR treatment twice a day for the first month, and then 80 minutes a day thereafter. It is only Dusty’s 5th day of treatment. So far, I cannot say we have seen any visible improvement and nor does he report any. However, it is still early days, and I remain hopeful that Dusty will benefit. I will be tracking his progress.

Hooked up!

Hope...

I knew the runway was short, and the captain warned us of a steep take off, and then a pulling back of the engines, due to the noise restrictions in the area of our local airport.

The 737-800 was poised to take off, the engines start revving, the aircraft vibrating from the sheer power of its engines. It became louder, and louder, and suddenly there was an abrupt thrust forward as we sped down the runway. I glanced at my daughter and son next to me, and then to my older son in front. I had an adrenaline rush. This was a different kind of travel adventure. We were going to try out a new treatment I had heard about, a treatment for my son that would take us to Corpus Christi, Texas.

Suddenly, amidst the noise and the vibration, a tremendous force lifted us into our steep ascent as the engines roared loudly, and my head was planted back into my seat. I trembled, not out of fear but out of pure excitement, and hope.

Hope is a state of being, rather than an attachment to an outcome or a goal. It is that feeling at our core that leaps out when we are faced with something challenging to fight for. It sets us on a course of never giving up, never quitting, but forging ahead often against the odds. Hope seeks out the opportunities and possibilities in every difficulty, in every challenge. It is a conscious decision to have a glass half-full versus a glass half-empty.

Our journey was not a simple one. Traveling with a 330lb power wheelchair poses its own challenges, especially faced with multiple flights, and also dealing with transfers off one chair, onto another, requiring airline assistance to help lift my son safely. After flying on two flights, across four states, and two time zones, the last leg of the journey took us on a three-hour drive from San Antonio to Corpus Christi. We finally arrived on the warm, humid shores of the Gulf of Mexico. A brilliant sunset briefly greeted us as it disappeared into a dark sky.

As we settled in for the night, I was reminded of a scene in the 1994 movie Shawshank Redemption. This is a story where hope wins against the rigid pessimistic walls of a prison.

There are many great lines in the movie, but the part that stands out for me is when the character Andy talks about hope after spending time in solitary confinement for playing music over the speakers.

Andy: …that's the beauty of music. They can't get that from you. Haven't you ever felt that way about music?

Red: Well... I played a mean harmonica as a younger man. Lost interest in it, though. Didn't make too much sense in here.

Andy: No, here's where it makes the most sense. You need it so you don't forget.

Red: Forget?

Andy: That there are places in the world that aren't made out of stone. That there's... there's somethin' inside that they can't get to; that they can't touch. It's yours.

Red: What are you talkin' about?

Andy: Hope.

Red: Hope?

Duchenne is a difficult road, and presents many challenges along the way, and sometimes it does feel like a prison sentence. Gradually, duchenne steals many things, your ability to walk, to hug, to move, to talk, to breathe, but there really is that something inside of you, that it can never get to, that it can never take… Hope.