Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Friday, September 14, 2012


    Especially relevant for my U.S. friends, but also others around the world who share the same experience!

Jason Read, University of Southern Maine

Ya think.....

Sunday, September 9, 2012

There is NO Such Thing as a Standard or Run-of-the-Mill Human Being: Stephen Hawking

(Click picture to enlarge)
" We are all different. There is no such thing as a standard or run-
of-the-mill human being, but we share the same human
spirit.  What is important is that we have the ability to create..."
Stephen Hawking, the opening ceremony, 2012

Wednesday, September 5, 2012

Back to School: Part 2A School-Based Physical Therapy

     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 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!"

Monday, September 3, 2012

GUEST POST: Where will YOU end up? by Melissa at the Seed (a newer disability blog)

Melissa at the Seed
   I am honored to be able to share this post by Melissa who blogs at the Seed.  The following are Melissa's words which describe her life and children.  Please support this endeavor!

  "I’m a mom; I’m a wife; I’m born and raised in New York; I’m in my early 30's; I have two children - "the girl", a 14-year-old with global disabilities and "the boy", an 11-month-old boy who has an auto immune deficiency called Bruton's; I am married to a wonderful man who is the most supportive person in my life but who can also be the most frustrating! When you're here, maybe you'll laugh or cry or roll your eyes. Maybe none of the above. Whatever brought you here, I hope you stick around."

Where will YOU end up?

     I have said time and time again, the disabled are deserving of protection of their rights not because we should feel sorry for them but because they have a RIGHT to them. The Medicaid uproar going on in Congress and local governments is not a medical issue, it is a CIVIL RIGHTS issue and a SOCIAL issue. People who have disabilities are treated as second-class citizens and even as sub-human in extreme (and very real) cases and so many times it is gotten away with because they are the least able to defend themselves.

     How would our society (yes, I'm talking about you and where you live and who you hang out with) look today if the revolution started by Rev. Martin Luther King, Jr., among others, had not taken place. When you think about how it was back then - "colored" and "white" separations, rear entrances for non-whites, standing room only for blacks, all-white juries - does it look normal to you? Does it seem like that should be the way it is? Do you, right now, today, think that MLK was a trouble-maker who should have quieted down and accepted the "separate but equal" laws because they were fine and didn't seem to cause you any problems? If you don't think agree with that notion as it pertains to MLK back in the 60's then why in the world are you allowing for inequalities that are alive and well today?? Why is it that the disabled are ignored, mistreated, killed and locked away in institutions for no other reason in many cases than they just had nowhere else to go. That's ok with you?

     Tell you what -- let's imagine that you lose your job and can't afford to pay for your home or apartment and all of your relatives (if you even have a family) are too old, too busy or too broke themselves to let you live with them for free. They also can't buy you food to eat or clothes and shoes to wear. The homeless shelter is full, so you can't go there but they wouldn't have taken you anyway because you're a bit too much to handle since you have a medical condition that requires medication. We're gonna put you in an institution. At least there you'll get the medication, right? Well the doctors there are overburdened with the number of patients they are supposed to keep track of so your file got lost and your prescription was never sent to the pharmacy and it's on hold because all the paperwork you filled out to try to get free medicine got mixed up so now it will be another month on top of the 6 weeks you've already been waiting...But at least you'll have clothes, right? Well, the clothes you managed to bring with you in your suitcase was fine but now it's been a few months and the laundry at the institution lost some of your stuff (or your roommates stole it) so you'll have to make do with your dwindling stash. Not sure what's gonna happen when the seasons change, though. At least you'll have 3 meals a day, right? MMMMMMmmmm, love that institution food! Gotta eat what you're given and you better enjoy it cuz who knows what comes next! At least you'll have a roof over your head. Yes, 4 walls and a roof. Can't leave when you want, can't see friends when you want (if you manage to keep any), can't get up when you want, can't go to sleep when you want. Sounds like a dream come true!
Understand that a huuuge number of American citizens of the 1960's wished the whole thing would just go away. So many rolled their eyes and said, "There THEY go again.." So many did much worse things - lynchings, beatings, robberies, intimidating, just to name a few. Can you see yourself having that attitude back then? So why is it ok to be that way now?

     "To institutionalize a disabled American costs four times as much than to give assistance for independent living. This issue is about civil rights, not about medicine. People who have the ability to live in integrated, affordable and accessible housing should have the right to do so."-Actor Noah Wyle     Disabled among those arrested at Capitol protest

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