On July 24, 1998, our son, Adam Dzialo, drowned. Twenty-five minutes under water at a summer camp when he was 12 years old eventually resulted in a disabled body but produced an indominitable spirit and brilliant soul. Seventeen years have passed...we believe our son and his family to be in an active state of healing. We devote our lives to his maximum possible recovery and his comfort in his body.
Breathing, respiration, oxygenation, the movement of chi, the life force which sustains, resides in a small set of paired organs. The breath of the outer and movement of the inner....it is that which sustains every vital process in the body. The simple exchange of the most basic molecules enables the body and soul to sustain connections to the universal process of life.
In the world of disability, respiration is perhaps among the most vital and sustaining forces of life. In the expanse of disability, mucus, stickiness, shallowness, lowered blood saturation levels, hyper or hypo ventilation, compromise the body healing and curing itself. This exchange between the inner and outer worlds enhances, inebriates, defeats or compromises living. To me, the lungs are paramount for my son; this organ and its process physically and spiritually maintain the force of life.
If you not severely compromised, you can learn deep breathing, yoga, various respiratory protocols which enable a decrease of stress, a hyper-oxygenation of the blood, a rhythm of interaction with the outer and inner and an enhancement of immunity. There are many conscious adaptive approaches. BUT, what if a child or adult is so fragile, medically complex that conscious controls are not available? So, so many of our friends have disabled children or adult/children who are challenged by forces of the body and the environment and they develop respiratory issues which make them vulnerable to a diminution of life force, to pneumonia, to shallow breathing, to airways and bronchi clogged with mucus, to.... are there interventions which strengthen the most vital of systems?
One ABR (Advanced Biomechanical Rehabilitation) protocol which has significantly assisted my son is noteworthy; it's a modification of a older protocol. Posted a while ago on my Facebook page, I wanted to share this protocol for parents to assist in strengthening that which is so vital. I know it is not the only intervention; I am sure others could add various techniques. Breathin' is so very important.
Here is our exercise explained by Leonid Blyum, founder of ABR , on Adam in April, 2013.
We are approaching ten years of ABR (Advanced Biomechanical Rehabilitation) in our daily effort to allow Adam the maximal amount of comfort in a body riddled with spasticity and contracture. We make progress: the scoliosis resolves, the space between vertebrae increases, the rib cage becomes even, the pelvic floor shifts to a normalized position. Adam can again sit comfortably in a wheelchair. These strides have developed slowly without a need to resort to any allopathic interventions.
People often wonder if the theory of fascial collapse, the need to strengthen the core and the methodical process to move from spasticity to weakness to normalization is real. Underneath spasticity is weakness and the journey is filled with what I consider "healing crisises." Things never simply just get better, nor is healing a purely linear process, without crisises along the way. Change produces challenges that you work through...as spasticity gives way to weakness, challenges develop until strength of the core and the supportive fascia returns. Crisis occurs in many and unique ways.
Below is a new five minute video from the Denmark ABR Center which traces the real effects of ABR on hip subluxation. This subluxation is often a function of pelvic and core weakness. It's a common condition in CP and other syndromes characterized by a manifestation of low or high tone, spasticity or floppiness. This video traces the effect of ABR through x-rays over years. Surgery, muscle releases, casting, etc can and are avoided. Surgery is an intervention which often needs repeat and ultimately weakens the fascia. Seeing is believing.
ABR is a slow, intentional methodical parent directed process which can normalize hip subluxation. The alternative in more severe cases is surgery and casting....
Many children who have severe special needs and attend public schools will receive a "related service" called Physical Therapy through their IEP. In many cases, these children are neurologically affected because of a brain insult, i.e. stroke, cerebral palsy, traumatic brain injury, muscular dystrophy, genetic mutations, metabolic disorders, etc. These diagnoses result in movement disorders as a result of spasticity, dystonia, contractures of limbs, scoliosis, hip subluxations and a host of issues which impact a student's ability to progress educationally.
From my experience as a high school principal for over 30 years, physical therapists and their assistants work with students to overcome these deficits to some degree. Most of their efforts result in more severe, sustained damage rather than good. Most IEP's call for 30 minutes of PT about 3 times a week; the equivalent of receiving no service at all.
A bit of history is required. Physical therapy is based on a model which has not changed over the past 50 plus years. This practice is often in direct contradiction to research and science based evidenciary approaches. I would assert that most school based physical therapists know little about the human body and movement, but they would be insulted. I do know that the approach in school based special education program does not work, is not scientifically based and is harmful in many cases.
Adapted physical education is a component of regular physical education...the curse of most students. It's actually activity which could be directed by any paraprofessional. Also PT may be beneficial to those students whose muscles may need some strengthening but possess normal tone. That's where the value stops.
School based PT's are infamous for intruding into territory where bodies or limbs or spines are spastic, contorted, dystonic, deformed, non-mobile, etc. Here is the area which abounds with failure and damage because their bag of tricks is rooted in orthopedic modeling. The bag of tricks includes stretching limbs, rolling spastic bodies on therapy balls and bolsters, standers, gait trainers, etc. They also frequently recommend AFO's, DAFO 's, and consults for medicines and surgeries. So let me take a look at several tricks which cause damage: stretching spastic muscles, standers, and orthotics.
STRETCHING: Well, it's obvious that a brain insult results in a collapse in the fascia. The musculo-skeletal systems are there, but relatively useless without the support of a network of connective tissue called the myofascia. Without an intact, seamless, strong fascia where the layers glide seamlessly, the other systems don't work. An inability to hold one's head upright is not a function of a lack of cervical vertebrae, nor cervical muscles...it a collapsed fascial system. This is a symplistic explanation of a newer view of a dynamic interaction of systems.
So, PT's believe that if you stretch spastic muscles or contracted limbs, the muscles will lengthen. When the muscles lengthen spasticity will decrease and movement is more probable or efficient. The reality is that the opposite happens .. the more stretching, the more intensity of stretching, the greater the intensity of the spasticity. This occurs in the context of collapsed fascia. Despite the research, PT's stretch the shit out of kids' muscles. It never works but you keep doing the same thing.
Research references on stretching muscles and spasticity:
STANDERS: Here is another very expensive, relatively meaningless piece of PT equipment which after a few months of use ends up sitting around. There is minimal research concerning the effectiveness of standers. A PT will say that it allows a disabled kid to appear more "normal" in that he or she can be at eye level with kids and adults. OK? The only research that I was able to access was that over a 6 week period of time, standers did temporarily lengthen hamstring muscles ...note for only six weeks. Anyone know of positive research?
Place this child in a stander with the effects of
gravity and you will amplify the existing curvature
Of course the negatives are big negatives. Strap a kid in an upright stander and imagine the strain on the system? Here is a scenario with my son, Adam, in a stander for one hour a day. First you have a weak core of fascia which envelopes the trunk. Oh, the fascia supports the muscles and the vertebral column. So, a weak support system of fascia leads to uneven support of the spine. Some muscles pull left, others right, some are weak, others strong....a tug and pull on the spine. Add an upright stander and add the effect of gravity pulling the cores and the spine downward...the weakness of the fascia provides the ground for an unequal distribution of forces which allow the gravity to pull downward unequally on the spine. The result is scoliosis. Once the curve is initiated, the more time in the stander, the greater the curve. Seems simple. The cure for the resulting scoliosis is either orthopedic intervention by fusing vertebrae or inserting titanium rods which have snapped due to increasing spasticity.
Piss poor operation to insert a titanium rod
to solve the problem of scoliosis
This is a high price to pay for eye-level positioning. And, the surgery further weakens the fascia through scaring and adhesions. Do no harm?
Orthotics? They take the intricate web of bone and assume it's similar to a hoof. One simple joint at the heel or the ankle.. The purpose? Dunno! Can't correct a deformity, can't strengthen the myofascia, can't prevent spasticity or contracture ... do have some mild effects with children who are walkers. Big money and they hurt!
Braces and Orthoses in Cerebral Palsy (YouTube explanation of why they do not work in most cases)
For the past 50 years we have considered the same interventions based upon faulty assumptions of how the body works while there is skepticism towards newer approaches which have positive and non-intrusive effects on the body. But they don't teach these in PT schools which are probably endowed by durable medical suppliers and keep making the same devices without peer-reviewed research as to their effectiveness. I truly believe that the present system of school based physical therapy is minimally bogus and generally dangerous. I could share thoughts and experiences in more depth on orthopedic surgery for scoliosis and various subluxations, on spasticity meds and baclofen pumps, and I will on request in a later blog, but only if there is interest (please comment if you want me to explore interventions of orthopedics or physiatry).
The follow up post will focus on promising modalities which work more effectively than the old stretch and pull. There are a number of promising approaches based on scientific evidence that you won't see in school, unless, of course, you throw a hissy fit as a parent. Remind PT's "FIRST and Always Do No Harm!"
Well, Adam has scoliosis (which has improved dramatically); a depressed vertebral column; insufficient space between the vertebrae, and intercostals which seem to fuse ribs together. Also the illiacs and the sacrum need to be shifted forward. These issues are common to the collapse of the myofascia which often are a result of Traumatic Brain Injury and a near drowning.
And so, here is a video in which Leonid explains how to use the egg and the "blob" to roll on Adam's back and extract the dural column and "unglue" the intercostals. The instruments and the technique have been further developed since our last visit six months ago. We expect clearer and deeper respiration and increased flexibility as well a strengthening of the core.
The New, Improved Egg Rolling Exercise...a demonstration of refinements to the egg rolling exercise by Leonid Blyum. This video focuses on selection, hand technique and work on separation of the clavicle from the 1st and 2nd ribs and their connection to the manubrium. The fusion of the myofascial fibers result from their collapse during the aftermath of a traumatic brain injury, This separation is vital for the improvement of respiratory processes in the upper thoracic regions of the upper anterior portions of the chest wall.
We were able to participate in a two hour evaluation of the history of Adam's progress over the past year of ABR (Advanced Biomechanical Rehabilitation). Leonid Blyum, through a pictorial history of Adam's body was able to demonstrate the changes in his core stability, thoracic expansion, vertebral lengthening and pelvic floor adjustment. Positive changes in the strengthening of the myofascia, which supports all structures in the body, also presents future challenges which need to be addressed.
We were fortunate to share our evaluation with the many members of the ABR international team from South America, Europe, Canada, Hong Kong and a guest and friend from Hawaii.
Sharon Dzialo, Leonid Blyum (developer), Annie LaChaud (Director ABR Canada),
Sarah Lee (Director ABR Singapore), Diane Vincentz (Director ABR Demnark),
Gavin Broomes (ABR , Argentina) review Leonid's photo records from
the past years.
Leonid explains how Adam's respiratory compartments have expanded from the upper thorax
to the lower thorax...a deeper breathing, which also brings up and out years of
accumulated "gunk" in the lungs. Not pretty to look at, but it's a transformational landscape
based upon excavation of submerged and rigid structures. This "archaeological dig" takes
years to extract the vertebral column and unglue intercostals, but it is working its magic.
Ball rolling along the vertebral column and also along the illiac-sacral triangle
has allowed Adam to sit more squarely in the chair for longer periods of time.
Gavin Broomes (Argentina) and Sarah Lee (Singapore) video
Adam's evaluation by Leonid for training purposes at their respective
ABR centers
Leonid examining upper thoracic division developing in
Adam's C-7 and shoulder blade areas which need further
"excavation" and extraction for core stability
The evaluation highlighted many positive changes in Adam's core strength, head stability, respiratory capacity (especially in the lower thoracic areas), increases in the spaces between the vertebra in the dural column, and a stabilization of the pre-existing pelvic tilt.
Also the evaluation indicates that work needs to continue on the intercostals, dural tube, area between C-7 and the shoulder blade, the occipital area, and the space between C-7 and the should blade. Much emphasis will be also placed on the anterior thorax and continuing work on the illac-sacral triangle.
Interesting to note is the fact that in a traumatic brain injury the body loses its motor map, which needs to be regained. Two legs are treated as one because of the loss of a motor mapping; two arms lack differentiation and compartmentalization...many projects to work on. The latter notions seem to be consistent with the theory and work of Anat Baniel who trained with Moshe Feldenkrais. This is another piece of the complexity of Traumatic Brain Injury: the body needs to re-learn its motor map.
The following post will focus on the prescriptions and exercises for the next six months.
January 14, Adam will be 26 years old, having survived 13 and a half years post a 25 minute underwater near-drowning. Adam is certainly severely disabled, non-ambulatory, non-verbal and needs 24 hour a day care. He can do nothing for himself. What he is, however,....is a TEACHER. Teachers do not need words, they do not need written tomes filled with trivial drivel, they do not need a captive audience. Teachers simply emanate life and its true value and purpose . . . pure, unadulterated being.
Life pursues itself; life is its own mission; life does not need to be valued by others to be affirmed. Life is .... Adam has taught us that others can never learn unless a heart is fully open. An open heart is a singular rarity in a world of narcissistic obsession. Adam has taught us that what is valued is simple, is unadorned and often unappreciated. It is life aware of itself and an awareness that there are few significant others who unconditionally love and unconditionally care. Unconditional love sustains life; it provides a cellular immunity against the forces of indifference which plague our society.
Adam...the only human who wakes every single morning
with a bright smile...there are no exceptions. This
is a life lesson on how to greet life itself!
Adam has taught us to allow into our lives only positive energy and to dismiss that which drains from us life force. Stripped of its adornments and desires, its ambitions and pretensions, life simply is NOW....this moment and this moment is beautiful. This moment has no past and it has no future....it is NOW. We have learned easy and hard ways to let go of family and friends who embodied the energy which saps life from self. We have learned to tell the truth, without regard to consequence. We have learned that pure love is that love which neither expects nor requires anything in return. We have learned that our soul group will be together in the energetic world forever. Would any of this knowledge be available without Adam? Not in one's wildest dreams. We have learned, he has taught.
Our only wish for Adam is a long life. He has much more to teach and we have more to learn. Others can learn also, but they need to be present and to have an open heart. I would hope people stop running from learning because there will be a day when it will be too late.
We journey together, a small unit. The unit could not be more tight nor more secure. There are no regrets; there is often a soul weariness and a soul enlightenment. We have been together in past lives, in many differing roles, but this soul group endures. That is all that counts!
ABR (Advanced Biomechanical Rehabilitation) is an intensively parent involved therapy that is guided by scientifically based biomechanical principles which attend to the structural collapse caused by brain injury (CP, stroke, near-drowning and many other brain assaults). The techniques bring about predictable musculo-skeletal changes by strengthening the myofascia of the body. Complex science is applied through simple principles and applications. The theory is expounded upon by the developer Leonid Blyum on his blog. Research validation is underway. The approach is very parent intensive and this post details the various hours of applications required to produce change. Parent training and evaluations occur four times a year initially, then are reduced to twice a year. Time and effort are crucial factors to reverse the myofascial collapse of a brain assault. Here's Adam's typical ABR day:
6:00 AM to 7:00 AM (hopefully while he sleeps)
Soft egg rolling on foam along the lumbar vertebrae
Soft egg rolling along the sides of the upper sacrum with Adam on his side
9:00 AM TO 10:00 AM
Soft ball micro rolling on lateral neck up to but not over the SCM
Super soft mini ball rolling on cranial apex with foam platform
Soft egg rolling along clavicle
Soft egg rolling along the pectoral muscle
10:30AM TO 11:30 AM
Soft ball rolling along the upper vertebral column
Soft egg rolling along collapsed area on sides of lumbar vertebral column
Soft egg rolling along fascial collapse on sides of lumbar spine areas
Soft ball rolling along lower lumbar and upper pelvic floor
3:00 PM TO 4:00 PM (While watching Dr. Phil)
Placement of soft egg on arms for short rolls to reduce spasticity and increase fascial strength
Rolling the soft egg on the arms...both arms per session
8:00 PM TO 5:00 AM
My invention: three inch memory foam topper with cut-out for
pelvic and upper posterior thorax bladders
Adam strapped up for the night: bladders, platforms and foam on
posterior thorasic and pelvic areas on back and similar set ups on chest, stomach and hips
from the front. Happy as can be...no? But he sleeps well.
ABR Machines (we use two) which rhythmically inflate and deflate bladders to
strengthen certain myofascia areas where we place the air bladders.
Conclusion
Ollie, provides professional supervision.
In between ABR treatments, Adam also gets fed, watches tv, and does other stuff, every day.
CONCLUSION: It works! No doubts on our part, none at all! No surgeries, no braces. no spinal fusions or rods,
no AFO's, no medicines of any kind, no baclofen pumps, no botox, just ABR. The best part, no
PT's or orthopedists. Just a kid who smiles every day!
Events happen suddenly, without warning....they say that death is part of the natural cycle of life; they say that death is a passing on to a better place; they say that upon arriving at the rainbow bridge there are friends, meadows, scampering friends; they say there is no suffering, no pain, just pure joy, Many have written poems of consolation.
Chloe came into our lives shortly after Adam's accident. She never left our side, often sat in Adam's lap as we took them for walks along the ocean. Chloe was never the healthiest but always feisty. She was loyal, an attribute that I could ascribe to only a few people. She loved to explore outside, to wrestle with Ollie and staunchly protect her stash of food. She loved to be with us and made the trip to Montreal for ABR training. No one was ever more excited to see you than Chloe...enthusiasm always abounded even on the last morning.
Chloe has a collapsed trachea, common to small breeds. Every morning we woke to her "honking"; clearing the throat and lungs; every morning except this one...the first day of a new year.
Chloe passed quickly, unable to breathe, unable to get comfortable last evening...suffering was not prolonged. She knew, I knew. She died snuggled in my arms, that is how she wanted it. It is how I wanted it to be. I told her it was ok to leave, and to follow white and blue lights as these would lead her home. She knew it was ok to leave, that's the way it should be. She knew we would be together again. Death should be safe and secure. It should be peaceful and chosen at the appropriate time...the time had come and it was peaceful.
We did not lose a dog, we did not lose a pet....we lost a friend. If there is a tragedy, it is that I could not feel the same level of anguish about most people I know because they know so little about unconditional love, about loyalty, and about "being there". Yes, I lost my friend, plain and simple.
Everyone (except me) likes fall in New England. Hurricane Irene burnt the leaves, so no color but brown. Dark when you wake up, dark when you go to bed. My koi are hibernating so you can't watch them swim around. Flowers and garden are dead. And it's cold early...I could go on, but why be shitty.
So to make my self happy, I am posting my favorite FB shares: they never fail to bring a smile. Hope one of them makes your day! If you live where the sun is shining and it's warm and you don't have a disabled kid and a dog who "honks" at 4:00 am, you don't need this post. Others maybe helped.....
I can't take credit for any of these creations, but then I don't know who to attribute them to.......
Adam sleeping though an egg-rolling demonstration
on the shoulder pocket below the clavicle
Well, we're back from Montreal ABR (Advanced Biomechanical Rehabilitation) and our latest evaluation and training! Actually, we've been back for two weeks and we have finally integrated the exercises into our continuing bodywork with Adam. Leonid, via video evaluation, noted that Adam's upper back is straightening and our work on his pelvic platform is shifting his pelvis into the proper position. His vertebral column is demonstrating a higher degree of flexibility. When sitting, if he is allowed to tip to the side, his butt (can't think of a technical term for ass) stays flat on the chair and no longer tilts and follows the spinal column as if it was fused. This vertebral flexibility is allowing him to sit more comfortably.
The lateral neck super-soft ball rolling exercise.
Remember, Phil, do not roll on the SCM as Fehim
emphasized numerous times because its painful for the kid.
So what's next? We are focusing on his upper body, clavicles and shoulder pockets to bring volume into that area which should allow for a greater release of the arms. Also, exercises focus on the top of the head and SCM (sternocleidomastoid) triangle. This area of application had greatly improved his swallowing in a brief period of time. Additionally, we have applications in the lateral thoracic area (L1 thru L5) and across the lower lumbar area. Working on his lower back will hopefully strengthen the fascia in this area and straighten the lower spine. We are now up to 3-5 hours a day of ABR and finally decided to vacation one day a week.
Placement of "egg" on the platform
behind the mastoid.
The incorporation of the "egg rolling" has quickened the pace of change and 5 out of the 7 new exercises deal with egg-rolling. We are amazed at the role of the fascia in the normalization of a structure which has been severely impacted by a brain injury. Muscles and bones mean so little to functionality and mobility; the fascia holds the totality in place and the "fascial trains" integrate body systems into movement systems. Amazing stuff!
Egg-rolling on the lower lumbar (L1-L5)
Needless to say, we are excited about the changes which we can more readily visualize and we continue work to produce more change. Adam is more comfortable in his body and we work to make him more so each day.
Coming Attractions: A New Frontier....
Equally exciting is a new clinical trial we have explored called a brain-computer interface where researchers have created a model in which a small aspirin sized chip and electrodes communicate energy across portions of the motor cortex. The energy differentials are calculated by computer to determine intention to move arms and the intention is completed through computer interface. If you think that you want your hand to turn TV on, the electrical charge in the brain is measured, translated by a computer algorithm to a computer to turn it on. A robotic arm nearby can be controlled by simple thought! Bizarre? More in my next post! Clinical trials have been underway since 2005 at Massachusetts General Hospital with people with ALS, MD, spinal cord injury and brain stem stroke. Brain Gate is becoming a reality!
The same team is researching epilepsy which is unresponsive to medical management.
The biomechanical changes in the body of a spastic young man (Adam, in this case) resulting from many hours of daily ABR (Advanced Biomechanical Rehabilitation) are never simply linear and even. Changes happen from the top (head) and cascade throughout the body. At times, as parts of the myofascial membranes and supported structures normalize, other areas demonstrate their inherent weakness from the original collapse caused by the brain insult, either acquired or present from birth. As we know, underneath all spasticity is weakness. The "getting better" part of the process is neither smooth nor linear. Transitions arise and changes in ABR protocols are necessitated. ABR produces releases in the myofascial layers which reveal further weakness which must be strengthened.
Our present ABR project: differentiation of
sacrum and illiacs; mobility in sacroilliac
triangle to prevent pelvic tilt when
seating.
We have now resolved the issues concerning excessive mucous production because of releases in the thorax and increased lung function. And we have fairly effectively removed restrictions in Adam's vertebral column through the mid thoracic area. Prior to ABR his shoulder blades were rotated high into the clavicular areas and there was little differentiation between upper thoracic and cervical vertebrae. These areas have greatly improved and alligned. On the heels of this positive progress, we are now confronted with Adam's inability to sit in his chair for periods of more than an hour without discomfort. Now, we need to confront the rigidity and lack of differentiation of the sacrum, illiacs and lower veterbral column. This rigidity causes pain when loads on the column come from below and cause the pelvis to tilt. Now begins the process of ungluing these structures from each other and strengthening the lower end of the vertebral column.
The EGG...actually we use the orange very soft
version by eggserciser and the red soft by theraband.
After a video consult with Leonid, we are using the new "egg" rolling technique along the illiacs and the sacrum while Adam is prone so as to release the rigidity which produces the pelvic tilt when seated. Also, we are using the egg to roll from along the hip bone to the pubic bone to strengthen the lower abdominal wall now that previous exercises have produced needed space. Parents need to be trained to use this new tool and, most importantly, the necessary targets will be prescribed for them based on each child's physical challenges.
Since ABR, the rib cage evened out, abdomen strengthened
and expanded, shoulders moved to proper position and intercostal
spaces greatly expanded.
After several weeks of the new protocols, we are noticing more changes in the sacro-illiac triangle and a greater division between the lower rib cage and pelvis on the right side of his body. All good things! Our belief in the success of ABR maintains our determination and we do the techniques daily for 3-5 hours and use the machine in the evenings for about 10 hours a night. While Adam's body is not a pretty sight, it is getting prettier and more comfortable.
Note the finger pointing to the increased division between the lower portion of the rib cage and pelvic area. For many years these structures overlapped and ABR has allowed for differentiation and production of space which will allow the hip bone to move into its rightful space in the abdominal wall. No, by the way, Adam doesn't have two navels. The upper one is the old g-tube stoma which held the mic-key that Drs. Phil and Sharon removed and got the old boy eating via mouth.
Again, ABR is a singularly effective therapy to normalize structures which collapsed as a result of brain injury...it's a parent intensive long haul, but changes develop along a predictable, yet non-linear, uneven path. Nothing is simple in the world of severe disability.
Prior to ABR, you could not differentiate scapula nor
any of the cervical or thoracic vertebrae...now they are visible and
aligned. Next project: mid thoracic to sacrum straightening and
strengthening. We're getting there!
