Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Wednesday, April 27, 2011

A Primer on Bringing Out the Worst in Me.....

It is a consolation to the wretched to have companions in misery.
Publilius Syrus (1st century BC) 
Maxim 995 

       I feel a great dissonance when I am out of sync with nature (just another brilliant intuitive insight).  In the winter, we hibernate, slow down. lay low and decrease expectations of self...just like a gluttonous behemoth in its cave.  In summer, we bask in the sun, taking in the richness of the rays of light and warmth.  In the fall, we slow down and prepare for the hibernation by participating in the changes nature brings.  In spring?  Well, flowers bloom, trees bud, the soil is prepared for planting and the effing Canada geese return to crap all over your lawn. I suppose these vile creatures are ingesting all that lives so that they can effectively breed and make more genetic copies of themselves.
       Well, what do you do if you are out of sync with nature and plain out of valium?  What do you do if (of course, in the land of disability care-giving) things are not green, pliable, sunny, warm and fuzzy?  What do you do if one day is like the past 4,378 days?  Wake the boy, shower the boy, change the boy, feed the boy, ABR the boy for hours, laser him for a bit more, feed again, make faces, entertain and "flip" him off so he laughs.  Change and feed; change and feed; clean stuff up; gag him so he gets the crap out of his throat otherwise he freaks and hyperventilates.  (I would freak if I almost drowned and died and had a hard time breathing).  Anticipate needs which may not even be there.  Each day the same, and it's spring...a new beginning, refreshing new life, propagation of the species (as if I could care and have the energy for that!).  Simply, the outside is not in sync with the inside.
And I think I have it hard?
       This is not the way it should be...I should be grateful for what is, for Adam's life, for his health, for my health (dubious), for being the beneficiary of a gift ( a handicapped son) from god which brings out the best in me?  He/she/it knows what's best for me and what will purify me of my past sins or perhaps, allow me to put some karmic points in the bank so the next time around I will be rewarded with riches and a 1000 virgins.  Sorry, this is my last time through, and I was pretty adamant about that with the guy upstairs.
       I have to accept that life is what it is...a balance of a bowl of cherries and a bowl of turds.  Eat and flush!  I think that was a movie., something like "Eat, Pray, Love"... probably the worst movie I ever saw and I'm mournful that Adam had to sit through it with least there were burgers and beer at the movie theater, but no discounts for kids in don't get a discount because nobody notices.  Someone who sits in a cafe and drinks strong coffee all day in France would label these periods "existential ennui." 
      When you care-take a pretty complex kid, you, unfortunately, don't have the luxury of much time to wallow, although I think that wallowing could be somewhat good for the soul.  St. John of the Cross wrote a lot about the "dark night of the soul."  He had a lot of time to wallow and was made a you think I have a chance at making a canonization?  Will you write to the Pope on my behalf?  Probably not, because if you're reading this crap, you are probably a lot like me.
       You do what you have to do, you fight for what is important, you get up every day, even if you don't want to.  You smile when you aren't happy, you eat only that which brings you joy, you drink what pleasures you.  After all, we are entitled to these fruits of the springtime earth.  Above all, you NEVER,  EVER consider doing something different from what you are doing.
        The positive to this life is that you lose your say things as they are, you see people as who they are, you envision possibilities, like real friends and parties and cruises,  which may never live and you do not have the luxury of dying because there is a job to be done.  You do the job because you love your child; not because he/she is an angel, a special person (I hate that' phrase), a gift from above.  Because he/she is your child...your blood, your spirit, your life....that is unless the stork dropped the kid off at the wrong house.  That is always a possibility...

       I am happy now, because I know that I am not alone.....or, so I assume?

Monday, April 18, 2011

I Have Found True Love...Forever

       Love is one of those things which appears in your life and consumes every thought during every waking moment of your day.  It is something which happens quite infrequently, lasts for a long time, embodies the essence of "that which you cannot do without."  I have found it and it makes me happy on both the earthly and the ethereal plains.  You touch it daily and embrace it without reservation and it gives life meaning in so special of a way.
       My love whirs at a slow speed and then at a very fast speed...she vibrates gently, but has a super powerful motor.  Tall and slender, crystal clear, purring with that special intensity.  It makes things the way that they should be.  When she isn't around, it seems that life stands still.  She is my salvation and my redemption.  This goddess can never be replaced and is taken care of with utmost kindness and reverence.  Here she is:

There is no creation like the VitaMix and her 2.5 horse power motor.  This girl can liquefy the hardest nut, the starchiest pasta and toughest prime rib.  She is worked to the bone at least three times a day.
       Well, for the first three years Adam was tube fed with an able mic key, a device which diverts food from its natural course right into the olde tummy.  Of course, you have reflux and mucho vomit because food is supposed to go from mouth through esophagus to stomach.   This path exercises and strengthens the appropriate muscles and sphincters.  Use another path and the disuse of those muscles allows partially digested food to upchuck.  Now those cans of formula which are dripped or bolused in are generally crap....milk, whey, and above all high fructose corn syrup...stuff we wouldn't eat.  So my Vita pureed the shit out of home cooked food to a point of liquidity so that the pump and line would not clog.  Gee, real food abated the reflux and vomit.  Nature always surprises me.  I can never understand why we try to substitute the artificial for the real, especially with our severely compromised kids.
        After three years, we decided that food belonged in the mouth.  We restarted the swallow reflex with a process called deep pharyngeal stimulation...essentially swabbing the back of the throat with frozen lemon flavored swabs.  In time he swallowed, although somewhat delayed; so said the modified barium swallow tests,  Of course, the GI wouldn't remove the tube because of his uninformed and unfounded fears.  Wifey and I removed it ourselves and packed the hole with frankincense,  myrrh and slippery elm.  Closed in an hour and normality resumed with pureed foods and thickened drinks.
       My girl still works at optimal performance levels.  Anything can be pureed and Adam has gourmet meals and periodically frozen meals.  There is nothing finer and more durable than my VitaMix.
       She will stay in my life forever, no divorces nor separations.  Keep purring, baby!

No more of this vomit/reflux  shit...just mucus in the throat, spasticity, etc., etc.

Thursday, April 14, 2011

Guest Post: Maribeth Dawkins...Hope Springs Eternal

        Maribeth (Meb) Dawkins is Adam's longstanding ABR therapist and shiatsu practitioner.  She has often traveled with us for trainings in Montreal and has provided Leonid with a wealth of information about baseball and ornithology, neither of which are the hotspots of Russian culture.  Meb has passionately cared for Adam and has been a stable force in his life for 12 years.  They are on the same page in life, in all areas, except favorite sports teams.  Thanks, for sharing this guest post and your gifts with Adam!
Hope Springs Eternal

      According to the calendar, spring is officially our current season.  It hasn't felt like it here in the Northeast yet, but there have been occasional signs.
Maribeth (Meb) Dawkins
       I drove to the Cape, to work with Adam, the other day during a sleet and snow event.  The temperature was hovering around thirty degrees, yet there were crocuses popping their hopeful heads through the snow.  It's hard to be full of hope when nature keeps throwing conflicting messages at you.  Even when your body, mind, and spirit aren't feeling the presence of Spring, you KNOW it is inevitable!
       One of my favorite things about the advent of spring is the return of baseball.  New York Yankees especially! (Apologies to the Dennison's)  What is more hopeful than a fresh start, a clean slate, a good long Winter's rest and six months of PLAY!
      Adam joins me in being a true baseball fan, though our allegiances lie on opposing sides of the best rivalry in sports.  Before his accident, Adam had, and I hope I'm quoting this correctly, "the best day of my life" in response to his first experience of a Sox game.  Sharon, Phil and I have spoken for years about how great it would be to get Adam back to Fenway Park.  Unfortunately, due to Adam's physical state, lack of mobility, and extreme reactions to overstimulation, this hasn't been feasible.  Adam's comfort zone is not something to compromise.
       To return to my theme of hope, how about Adam finally being ready to go to a game after all these years!  We have ABR (Advanced Biomechanical Rehabilitation) to thank for this, in addition, of course, to the constant love, support and healing he has generated, and received.
       The tickets are in hand, and Sharon and Phil will be taking Adam "out to the ballgame" in July.  I won't be there for this momentous occasion, as much as I would love to, but I hope and trust there will be many more opportunities to come.  Who knows, we may even get lucky enough to score some Yankee vs Red Sox tickets!! (Notice which team I put first?)

Meb's favorite pic!!

Adam (kind of)  at ? years old ( added by his dad)

Sunday, April 10, 2011

New ABR Exercises . . . Onward and Upward

              Advanced Biomechanical Rehabilitation (ABR) is our primary therapy used in Adam's rehabilitative journey.  It is supported by a host of other complimentary approaches as we we continue on this long journey.  The previous post focused on Adam's evaluation in Montreal which informs the exercises described here.
Intense, super soft ball mini-rolling on Adam's head
     Two full days of training, after a comprehensive evaluation,  provide us with the next six months of body work on Adam.  The theory which underlies ABR continues to unfold, it is never static.  The applications also unfold; there are new techniques and new targets to focus upon.
Application to Adam's ever expanding thighs
      The changes in application are significant as two new theoretical constructs are explained.  We will, of course, continue to support and reinforce Adam's hydraulic structure and numerous applications are targeted at the head because the head is the nexus of the hydraulic system which supports the myofascial layers...strengthening of the layers lead predictably toward mobility and eventually function.  Even in the tiniest embryo, you see a head and a rudimentary structure which develops...the remainder of the body develops from the head in the womb.
Leonid supervising Sharon's back of the head technique
       Two new constructs;  intense ball rolling and super-soft balls.  We learn a targeted ball rolling which is much more intense with a greater manual force exerted .  It goes deeper, it allows a penetration of the stress shielding layers of the body and above all it accelerates the rates of myofacial strengthening and change.  Change actually accelerates.  Super soft balls are actually the same structures which are further deflated and allow for greater coverage of the target areas.  This technique is especially applicable to the head.
Leonid demonstrating the positioning of head applications with the super soft ball
      Again, the applications provide for compression without distortion...intense compression of ball with mini rolls and a solid transfer medium...the energy of the process is transferred while bypassing the stress shielding factors of the outer body.  Strengthening the core ...structural change, mobility and function...a predictable course of change.
       And of course, ABR would not be complete with the more traditional 3-Q technique (quasi-static, quasi-spherical, quasi-isotropic).  We have three new 3-Q applications which target specific areas of the head.  These are targeted applications which are very specific to areas which need to extracted.  We are working on areas below the occiput and on both platforms behind the ears.  Intense ball applications focus on the head (both top and back); three areas along the vertebral column, the sacrum, fifth - eighth vertebrae on the thorax, shoulder apexes,and  both thighs.  We usually work on Adam several hours a day; Maribeth usually does 5 hours of applications every week.  Changes are definitively happening and at an increasing pace and in a very positive direction.
Maribeth employing the 3-Q technique on the lower lateral neck platform
     Oh, yes...Adam also has two ABR machines with 8 bladders inflating throughout the night..sacrum, abdomen, hips, thorax and mid vertebral column...also a set of high quality ear plugs.  He sleeps like a baby.
     Before you feel bad for Adam because of all the ABR, please remember that we usually give him one a week off from all therapies.  Really nice of us, no?

      For my adventurous readers, Leonid will be presenting and doing a live assessment at the Pacific Rim International Conference on Disabilities on April 18 in Hawaii ... still time to sign up...LINK to brochure.   It would make for a nice vacation on short notice!

Monday, April 4, 2011

ABR (Advanced Biomechanical Rehabilitation)...Evaluation: Spring 2011

       ABR is a biomechanical approach to cerebral palsy, brain injury, stroke, near drowning and other brain assaults.  With such an injury, there is a progressive collapse of the myofascia which supports the musculo-skeletal systems.  The myofascia are bands of interconnected tissue which allow systems to function as a whole.  This collapse is evidenced in scoliosis, hip subluxation, spasticity, dystonia, contractures and numerous motor impairments.  ABR believes that parents, with training, can bring back volume to the collapsed structures.  With a functional body hydraulic system, normalization of structure through the strengthening of the myofascia produces mobility and function.  All change is a function of non-invasive procedures: traditional physical therapy, orthopedic procedures and surgeries are avoided, and the use of botox is eschewed.

Adam and Leonid, sitting with some support
       All sessions are preceded by an evaluation of all the structural components of the body.  Skin quality, tone, volume, function, change are considered in the development of individual prescriptions of various activities.  Evaluations usually last one to two hours and are video-taped and photographed so that long range change can be plotted both for personal and science based reasons.  Change is evidenced in photos over the years.
       We have just returned from Adam's evaluation in Montreal by Leonid Blyum, the developer of ABR.  It's important to note that Adam is among the most compromised ABR clients given the extent of his brain assault:  25 minutes under water.  Numerous children and adults have lesser structural issues.
        In the last six months, Leonid noted that the skin quality of Adam's upper arms and volume in his thighs has significantly improved, making room for muscular expansion.  He is eating better as his jaw is more properly aligned.  His thorax is now level (originally the left side was higher and the right sunken). The space between his vertebrae has expanded and the ribs are rotating toward the proper positions.  His spine is gradually straightening and the pelvic floor is moving into a more proper position.  We are very pleased with evaluation, the observations and ongoing predictability of change.
Sharon, Adam, Leonid...thoracic evaluation
        Over the next two days, Leonid introduced parents to further refinements of ABR theory and applications and we were trained in new specific applications to continue the change.  Despite the severity of Adam's injury, his health is superb, spasticity lessening, and his body normalizing.  It's a marathon, over seven years so far, and probably many more.  The change has always been unidirectional and that is in a positive, predictable direction.  The following blog will examine some of the new prescriptions and and areas we will work on for strengthening.  Underneath all spasticity is underlying weakness of the myofascia layers.
Leonid, Gavin, Sharon..examining new folds as they emerge

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