'Tis the Season (Only a day, actually) To Just Be.......

My real-time hero, Greg House, MD

       Well, it's the holiday season; however you choose to celebrate it, whether you are a saint or a sinner.  Being the latter, I feel compelled to write on Christmas Day although I'm not sure I'll finish.  Adam is happy as a pig in the proverbial shit today.  No ABR exercises, no shower, no compulsory toileting rituals, no wheelchair time, unhealthy pureed food, movies about Santa's elves in bikinis (blond only),  movies abounding with adolescent scatological humor,  and maybe a splash or two of spiked eggnog.  A day off for his highness so that he can just "be".
       I often think that we don't give him enough time to "be" and we certainly don't give ourselves much time to "be".  Being in the moment is the mantra of the spiritually adept...not us, as we are really not given to conventional spirituality, nor are we adept (Christmas is a day of humility so I make this admission).  Moments in the day are regulated by things which need to be done, tasks that need to be accomplished and the mundane attended to...after that, there is little time to "be", just the peaceful sleep of the exhausted.  Hopefully, the karmic spin of the universe will allow me to live quietly in a Buddhist monastery in the next life time.  Just being...
       Anyway, my one day holiday wish is  for all parents and care-takers of the disabled to have one day to just "be" and to intentionally navel gaze.  It's ok, at least today, at least on a part-time basis!  Tomorrow will bring the same as yesterday...but not today.
        Additionally as a gift to all, I discovered and embedded a widget (top right side bar which will allow you to read this nonsense in pretty much any language...click the drop down menu and pick Russian (in honor of Leonid) or traditional Chinese.  In a flash the blog is now in whatever tongue you choose.  Well, off to brush breakfast off of Adam's tongue.
        A request, since I am mono-lingual, is for bi-lingual readers to leave a comment about how this translator  reflects the reality of the language.  I never trust widgets...especially those that track followers.  The numbers never match.

People vs. Dogs...Dogs Win!!!

Ollie, Adam's Doggie

     Well, this blog was to be about angels and demons, certainly not politically correct and probably blatantly irreverent...my wife of 29 years of marriage (she told everyone it was 30 last August)  vetoed the idea.  She said after the holidays, I would be allowed to publish; I do what I'm told! Hence, my happy holidays blog...

     So, I have decided to have a competition about the beneficial qualities of people versus dogs.  On the people side of the scorecard are most yokels excepting parents of disabled kids/adults and disabled people themselves and a few exceptional friends.  Few is to be very narrowly construed. On the dog side of the card is Ollie, Adam's rather pricey poochoon (a poodle and bischon designer hybrid).  We chose Ollie for Adam a year ago because the breeder told us that Ollie "needed a job" and we sure had one for him.  So this competition is about who demonstrates a greater sense of humanity, loyalty and downright pure selfless giving.  Ready"

       Adam has contractures in his hands, wrists and elbows, not a particularly pretty sight.  People usually won't touch his hands to hold them.  Ollie snuggles up to his hands and warms them.  Ollie: 1 point.

       Adam sometimes drools like a waterfall and when he's annoyed about the taste of a meal, he will spit it out, usually on someone's shirt.  People find this disgusting and either look away or give one of the parents (Sharon and I) a napkin.  If you touch drool it may contain some contagion, no?  Ollie loves this and will lick up drool and clean off Adam's mouth and clothes with his very sanitary tongue.  Ollie: 1 point 

       Adam will stare right into your eyes and this makes people uncomfortable.  One fine lady never returned to visit because she felt that Adam "looked into her soul."  Must have been some pretty seedy stuff in there!  Ollie will walk up Adam's chest and stand there and stare into his eyes, although sometimes he likes to lick the inside of the boy's mouth scavenging for not fully swallowed food.  Because of this somewhat irritating behavior, Ollie only gets .5 point.  If we break him of the mouth licks, he will get a full point.

        People are often afraid to spend time with Adam alone because they don't know what to say or what to do.  I mean, really, what do you say to someone who can't talk to you and just wants to look?  Ollie will curl up on Adam, hug him and warm him.  Ollie scores another point.

        People rarely come with presents for my disabled man-child.  Really, what is he going to do with a gift they probably think? Or he can't even appreciate it, right? Wrong, wrong, wrong.  Adam would love some comfortable new clothes, a new movie or music video, a book to be read to him or maybe a unique mobile for his bedroom.  Honestly, no ones deserves presents more than my Adam.  He wakes up every day and works all day long. . .   Unfortunately, I do remember when Adam came home after weeks on end in ICU after the accident with a prognosis of persistent vegetative (I really F***g hate that word) state (they were wrong, wrong, wrong), someone sent him a wrist watch for Christmas.  We would have had to break his fingers and wrists to get it on and I am very sure he was interested in knowing what time it was since he never slept in those early days!  Knowing Adam, he would rather have had a "South Park" video. We impolitely sent the watch back (seemed insulting to us)....never did get another gift.  On the other hand, Ollie leaves Adam "unintended gifts" which we have to clean up, but he is getting infinitely better.  Ollie scores again, somewhat.

       When people speak to Adam (those rare few sentences) they seem to yell aloud and iterate words very slowly.  He's not deaf!   We had him tested 12 years ago.  Ollie simply lays there in a deeply communicative silence.  Ollie scores 2 points, so he can make up for the accidental presents!

        Adam will sometimes reflux  or whatever, spew something from his mouth.  People will run to get you a three inch thick pad of paper wipes.  Not faithful Ollie, he'll do the work himself and no need to waste paper as he is an ecologically minded doggie.  Ollie scores again! Also, Ollie is never hesitant to do a mouth swabbing after a meal, so we have to be watchful, but he saves us mucho dineros on mouth swabs.... an extra point.  Mother always told me dog saliva is very clean?

Shining a Light on a Contorted Body

Terraquant Pro Cold Laser

                                                                                        




    As most followers of this blog are aware, I am a big fan of ABR (Advanced Biomechanical Rehabilitation) because it works and is increasingly supported by solid science.  Adam is very spastic and has numerous contractures of his extremities.  I don't imagine that he is comfortable, but despite the absence of any medications, he is in the state of perpetual smile.
     Seven years of ABR and running!  Adam's body is changing in a positive direction, spasticity decreasing, spine straightening and the visceral landscape looking progressively better.  We are headed to mobility and function.  A totally non-invasive, very parent intensive therapy does work!
      Never failing at researching new ideas, I stumbled upon the use of cold lasers and quantum reflex integration for children with cerebral palsy, brain injury and other conditions which effect body function and mobility.  Being a seven week old naive practitioner, I am slowly seeing cold lasers as a compliment to facilitating the body to receive an even more beneficial impact of ABR.
       Simply, primitive reflexes are automatic responses of infants to elements of their environment which are essential for survival.  These reflexes, when integrated in the first months of growth, lead to the development of muscle tone, motor skills, sensory integration and cognition.  When these primary reflexes remain active and dominant, difficulties emerge.  In children who experienced birth brain injuries, these reflexes are never integrated.  Reflexes which were integrated can later re-activate in cases of anoxia (near drowning), brain trauma, toxins, etc. and impede healing as they remain dominant and not integrated.
        Primitive reflexes (ie. the Moro, Babinski, Asymetric Tonic Reflex, etc) originate in the brain stem...the area responsible for survival.  The body, under stress, acts from the brain stem and cannot access the prefrontal cortex where information is analyzed.  Hence, children and adults with brain assaults can re-activate these reflexes and develop issues of a lack of mobility and function, lack of control of bodily function, speech delay etc.  So, is there a way to re-integrate these reflexes to facilitate the healing process?   Possibly....
        For the past seven weeks, I have begun to add about 45 minutes a day of cold laser treatment and reflex integration protocols.  Adam used to startle easily (Moro and Fear Paralysis Reflexes), eats pureed foods and drinks well, but doesn't suck through a straw (Babkin and grasping reflexes), and so on.  Well, changes are happening and it's often hard to distinguish the root of the change (ABR vs. QRI).  I have noticed that Adam is losing much of his startle reflex; he frequently looks to the side to find me instead of fixating on the tv; his knees are looking like knees (not tree limbs) and there is much more flexion in each knee independently.  This is the beginning and its preliminary and subtly exciting.
        Cold lasers have been around for awhile (for ABR fans, a Russian development).  Simply, amplified   light at certain frequencies transmits energy (quantum physics) to penetrate to deeper body layers...the light is cold so there is no chance of harm unless you shine it in the eyes.  QRI (Quantum Reflex Integration) uses a cold laser and targets certain acupuncture or trigger points which facilitate integration of primitive reflexes.  There are differing protocols for each reflex.
        I have seen change, but it's early.  My Happy Holidays! wish is that this procedure will eliminate some  of the reflexes which could interfere with Adam's body's receptivity of ABR therapy.  As another non-invasive adjunct,  it will do no harm and has the potential for much good.  So far I'm impressed and little in this life, other than my family, impresses me much.  I will update as I really get involved deeper.
         Warmest wishes for the holiday season which is a particularly conflicted time for parents of kids with disabilities.
          Stay tuned for my post holiday blog, Angels and Demons......

Illusions, Delusions and Wishful Thinking...THE Cure Is In Sight

     After twelve years of searching for answers to what actually works with our son's contracted, disabled body, I believe that I have developed a repertoire of knowledge exceeding most people in the medical profession and allied therapies.  If it exists, we have tried it; if it didn't work, we gave it up and kept on looking.
      Some  therapists and doctors communicated clearly that they believed that their intervention would make a difference in our son's life but they truly were "in over their heads", not understanding what impact they could actually have on our son.  Understanding brain injury is not a priority for most professionals because they believe, mistakenly, that healing plateaus after six months or a year. Still, in their arrogance they would say, "I can help your son." and we would believe them, investing time, energy and money.  We heard it too many times over the twelve year span.  A few professed to "know" what Adam wanted and this always hooked us.  In my life, I have only met a few authentic clairvoyants who can tune into the deepest reaches of the inner Adam or the inner Phil.   He, like his dad, doesn't like to reveal much of his feeling world to others...it's a man thing.
        This blog entry confronts  those who sell hope when they are really selling themselves; who make promises based upon a myopic view of their own realities.  Adam is severely brain injured, non-verbal, spastic and needs every aspect of his life attended to. We lovingly take care of him every waking hour.  He is also simply beautiful and lovable and only occasionally a pain in the ass when he spits his carefully prepared and pureed food at me.  So what works and what is simply bogus or placebo?  Glad you asked....

• Botox (to reduce spasticity):  Poison is poison; some recent studies show that botox affects more muscles than targeted.  Effects are minimal, treatment is painful, many injections to deaden targeted muscles; short duration and you need to keep poisoning your child.  Doctors say the poison is minimal, ok......if you say so.
• Serial Casting (to stretch spastic and contracted muscles):  Pump botox into a muscle, stretch the arm and cast in plaster.  Repeat the process.  Son howls in pain so I use wire cutters and remove the cast...really, makes the contraction worse.
• Traditional Physical and Occupational Therapy (Also AFO's and DAFO's):  Here is a science that hasn't updated itself in 50 years.  Pull and tug repeatedly on a contracted limb and it will stretch the muscle.  Nice theory, but no science behind it.  Makes the contractures worse.  Even well intended people who cannot see beyond their allopathic training can actually do harm despite their motto of "First, do no harm."  Trite sayings "piss" me off.
• Craniosacral Therapy:   Adam received this form of therapy for many years - fitting our need to find gentle and non-invasive ways to help him.  Therapists tune into what they call the craniosacral rhythm.  The practitioner claims to gently work with the spine and the skull.  Restrictions of nerve passages are said to be eased, movement of fluid through the spine is said to be optimized and misaligned bones restored to their proper position.  Very little scientific support for this and the training seems minimal. Don't believe it hurt Adam but not sure it helped. Finding an effective and well-trained therapist is essential.  
• Standers and Gait Trainers:  Well, these might be useful for mild disabilities.  There is no theory about why you put a person in a stander other that a normalization process (it makes the parent feel good).  So take a weakened body, with unstable joint capsules and unstable myofacial structure, strap them into an upright prone and supine position and guess what happens?  Well, gravity (remember Newton getting bopped with the apple) pulls down on the visceral body core and the spine is pulled left or right depending on which side is weakest and you get massive scoliosis and deteriorated joint capsules.  So my son feels normal in a stander they say, but what price does his body pay. PT's will tell you that gravity's pull reduces tone....yeah, right.
• Speech Therapists:  Well, they are good for oral motor stimulation when your child is ready to transition from a tube feed to  mouth.  They can also arrange for a modified barium swallow test to insure kids don't aspirate. They also try facilitated communication (hocus-pocus projection of the facilitator); eye gaze; buttons, switches, etc.  They all are outrageously priced and when the result rate is 50% correct, the Speech Therapists announce success.  That's the same rate of success as a random coin toss.
• Intrathecal baclofen pumps:  A hockey puck with baclofen implanted near the abdomen and shooting drugs into the spine.   Makes life easier for the caretaker, but what about the child.  Infections, wrong dosages, poor circuitry, infections, dislodged catheters, infections.  "I know this will help your child."
• Surgery:  Always a bad option unless the child is screaming in pain around the clock.  Cutting tendons, spinal fusions, steel rods to cure scoliosis, hip subluxation operations, removal of salivary glands because drooling is unappealing, etc.  Most surgery is either cosmetic (so the child looks normal) or to make care-giving easier.  With scaring, infection, hospital borne illness, continuing body changes because of a lack of address to the myofascial collapse caused by brain injury, surgery leads to repeated surgery and not for the increased function or mobility of the child.  The more invasive the procedure, the more likely it won't work.  One of our biggest mistakes, early on:  a tendonectomy (still whip myself for allowing this intervention).
• G-Tubes, Fundos and nissens, etc.  Valuable  in life and death situations. Try by whatever means to facilitate oral motor development and proper swallowing (one approach is deep pharyngeal neuromotor stimulation). The natural path of food is mouth, esophagus, stomach.  To bypass these organs will lead to an lack of exercise of these portions of the digestive tract.  A lack of exercise leads to weakness and atrophy.  Any guess why so many people with g or j tubes have serious reflux, vomiting and all sorts of gastric issues?
• HBOT:  Actually not on my "shit list".  Effects are there but somewhat exaggerated.  150 dives helped Adam's peripheral vision, cognition and general health.  Spasticity was reduced but regressed when treatments stopped.  I speak of this therapy as a plus.
• Homeopathy:  I have some good things to say.  Some report that these modalities are primarily successful because people believe that they will be.   The placebo effect is actually very good, it produces positive change without invasive techniques.  I like that!  We did have some dramatic responses from Adam after a few homeopathic remedies, convincing us that it was probably more than placebo,  allowing us to believe in the actual energetic effects on body systems.  

A Level Playing Field, Ya Think?

       Many people (friends, family and most of the world) assume that the playing field of human relationships should be level and that everyone should play by the same rules, adhere to the same conventions and that precise and measureable reciprocity should guide all behavior.  Well, mostly this is true; but, in some cases, like ours, it's an untenable myth.
         When you carefully examine why people who offer a helping hand in the beginning  often disappear, it can sometimes be attributed to a perceived injustice "you didn't take our advice", or "well, you could pick up the phone, too" (that is between 4 hours of  manual ABR, 10 hours of machine ABR, diaper changes, pureeing foods, lengthy feedings, appointments and a few precious hours of sleep), or "you're always welcome to visit us at our homes" ( but is your home wheelchair accessible, nearby, has a hospital bed, nebulizer, suction machine and a case of enemas?).  Somehow when taking your child to a movie down the street is a major production, traveling many hours in a wheelchair van with half the house packed in back just doesn't seem reasonable.  But, calling, visiting, etc. is something we should do regularly if the playing field is to be level?  Gee, it's not!
        Also, when you examine why some old friends disappear and you and your disabled child are no longer their social good-will project, you hear the same type of dribble which always assumes the playing field is level.  Here are a few: "Well, you have a phone, too.", "This is too hard to look at, it's like Adam sees into your soul.", "Just so very busy.", "It's depressing.", "You have such a hard life.", "We don't know what to say or do."  And so it goes.  Thankfully, my South and Central American ABR comrades have assured us that this is a cultural, American phenomenon...or so I hope.
          After a time, you realize that the journey is lonely yet personally inspiring; disability exists only in the eyes of the beholder; and inability to move or speak makes for a pure soul, a contorted body is merely a temple of the source.  Few are willing to accept these realities and so they make up a "personally plausible story" why it's too hard to stay connected for the necessary years of care-giving, however long that may be.....authentic healing is a long, loving process.  Parents embrace the process because they connect with the deeper roots of love.