Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Saturday, December 15, 2012

Our National Obsession with the Reason "Why?".....


     We face the horrific death of innocent young children.  We face the grief of parents and siblings whose wounds will inevitably never heal.  We face the person of our President in a display of profound angst.  We confront the heroism of adults who attempted to protect the most vulnerable and valuable members of their community.  We will never know the trauma of the police, first responders and medical personnel who came upon unimaginable carnage; a sight that will plague them in visions and nightmares for their existence on earth.  We can never imagine the loss imprinted upon the parents and the siblings of the slayed.  We can never imagine nor can we ever understand....
    What concerns me as a parent who, in his own way, had to confront a near death and permanent disability of his son 14 years ago, is the persistent search on the part of public for the reason why this happened.  I am perplexed by the disability advocates who jump to the keyboard to announce that autism, that a personality disorder, that Asperger's Syndrome does not make a killer.  I am in a quandary when the media disperse a plethora of diagnoses and bloggers believe that the public will blame the horrific actions of a young man on his appearance of diagnosis.  Although I am an anti-gun advocate, I question the immediacy of requests for more controls because it distracts from a greater national dialogue.


       I am confused by this national obsession to know why Adam Lanza killed his mother and so many others, especially young children.  The reality is that you will never know...but here is what I have heard as some indicators:
  • autism
  • personality disorder
  • Asperger's Syndrome
  • mental problems
  • developmental disorder
  • psychopath
  • inability to form bonds with other people
  • excessive gaming
  • being a "goth"
  • lack of gun controls
  • mother was a "big, big gun fan"
  • divorce of parents
  • deeply disturbed kid
  • had a rare condition where he could feel no pain
  • he was evil in our presence
  • a lack of god in our school (Mike Huckabee)
       And so, we have a national obsession with the "need" to know why.  We pour  energies into learning the why of his slaughter of the lambs.  We decry the fact that perhaps he could have been rescued from his problems.  We need to know why and we need to have someone or something to blame; as if that will make the universe right.  We need to make sure that "our disability" is not attributed as a cause of this horror. 
       Knowing the reason for why will not undo the horrific actions.  Knowing will not prevent future incidents which have been with us since recorded history began.  Knowing why will not reduce nor diminish the profound wounds nor grief of the victims and their families.  Yet, it is always what we do, look for a cause (real or not) and look for evil (real or not).  Horror of this type is not preventable nor is it understandable.   I believe that the search for "why" is a fruitless endeavor which detracts from a participation in raw grief.  Really, there is no answer to "why" nor is there a way to "prevent" horror.  The human mind and spirit is too complex and beyond mortal comprehension.  Bad things happen and they happen to good people.  Bad things happen...
      What do we do?  We should grieve and grieve deeply.  We should join our spirit in compassion, empathy and care with victims of horrific events.  People die when they should not, people kill when they should not, people are blamed when they have lost their souls.  We should mourn and we should grieve; we should lend support; we should understand that the wounds of the universe never really heal.  Pursuing an aimless search for why neither soothes the soul nor allows for our human consciousness to evolve.  What should be our national response?  Grief and mourning and a hope for a better day!
A National Example 



Friday, December 7, 2012

ABR redux....

     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....
Pins and rods

Like ABRCanada on Facebook...a great, great resource.

Monday, December 3, 2012

Hijacked


      Stealing the blog today – a wife’s prerogative.  Today is a momentous day for Philip, celebrating a Big Birthday (I’m not there yet so I can say that. . . )  Philip, dear husband and father, is 65 years old today.  Not sick, not feeble-minded, capable of being the chief cook,  caretaker to glorious Adam, handyman extraordinaire, adoring and attentive father to our princess bride and her new husband, Chief Financial Officer for all family finances, and my best friend.  Given the last fourteen years of our life these strengths are quite impressive.  And, he has all intentions to keep on keeping on (please listen to this Universe).  I will light a white candle to fortify this intention today!  He will be fussed over today – presents, cake, little to no chores (except when I need his help with Adam) and take-out meals throughout the day (since everyone knows – thanks to Philip- that I do not cook).  Our daughter and son-in-law visited  this week-end, bringing gifts and joining us for dinner at our favorite local restaurant.     Philip always manages to celebrate his birthdays for days, even though he protests that they are not important events to him.  He lies. 
      So, without further ado,  Happy Birthday Philip.  You are loved and cherished!

Thursday, November 22, 2012

Tuesday, November 20, 2012

To Everything There Is A Season...

A short wedding video of Aimee and Tony



There is a time for everything,
    and a season for every activity under the heavens:
    a time to be born and a time to die,
    a time to plant and a time to uproot,
    a time to kill and a time to heal,
    a time to tear down and a time to build,
    a time to weep and a time to laugh,
    a time to mourn and a time to dance,
    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
    a time to search and a time to give up,
    a time to keep and a time to throw away,
    a time to tear and a time to mend,
    a time to be silent and a time to speak,
    a time to love and a time to hate,
    a time for war and a time for peace.

Ecclesiastes 3 


Sunday, November 11, 2012

Back to "Normal"....

        The wedding is over!  The elections are over!  Sandy the hurricane and the latest nor-easter have passed.   Looking forward to getting back to normal, whatever normal may bring in the coming days...We live in a residential neighborhood near the ocean ...maybe the wind dropped him or her in after the last storm?  On second thought, must be a her.
A visitor to our home on November 9, 2012
Just back to "normal"



I know she's saying something to me, wonder what it is?  Or who is it?

Friday, November 9, 2012

A Dad's Wedding Speech....


    November 3, 2012

     For those of you who don’t know me I’m Phil,  Aimee’s Dad and on behalf of my wife Sharon and I, I would like to welcome you all here today to celebrate the marriage of our daughter Aimee  to Tony.
     I would like to welcome Tony’s parents, Steve and Donna, his brothers and grandmother, as well as all of our relatives and friends. I know a lot of you have traveled considerable distances to be here.
     Many of you have my met my son, Adam, who was severely disabled in a near drowning at a summer camp over 14 years ago.   A special woman in Adam’s life who had the uncanny ability to decipher his thoughts, once told us:  Adam says  “Love means showing up and being there, even when you don’t have to….”  It is with his sentiment that I welcome you.
   Thank you all for coming, it’s very much appreciated.

THE WEDDING
     As father of the bride I have the pleasure of making the only long speech on this magical day…
     I have given much thought about what to say or not to say. For those who know me, I speak my mind, my truth and really don’t censor much.  I often can’t complete a sentence without a profanity thrown in for effect.  But, I promised that I would be behave this evening.
However, for myself, it is has been over 31 of marriage years since I was allowed to say anything without being disagreed with, laughed at or ignored, so this is too good an opportunity to miss.
At the end of the day, it is my speech and I can say what I like.

MY DAUGHTER AIMEE
This is the point where I am supposed to say a few embarrassing things about Aimee when she was younger but unfortunately she has been a perfect daughter. I do know, however, that over the course of the evening, after a few drinks, Aimee’s friends will share more than you want to know.  I am also anxious to hear about those moments from my princess’s life which have been hidden from me with care.
Suffice it to say that Sharon and I are both very proud of how she much she has accomplished and how she has grown up and we are both delighted that she has found someone who she obviously loves and cares for very much.
Aimee is our first child and I can attest to the fact that it was a long and memorable birth…with emphasis on very, very long…
When we spent months in ICU with Adam  in 1998, an elderly and crippled physician pulled Sharon and I aside.  And, as if he could foretell the future, he simply said…”Remember, always, that you have two children…”
We never forgot those words, and I guess that’s how Aimee became a princess.  Despite whatever difficulty we faced, Aimee was always given the best … she was our daughter and our love.  Aimee has made us very proud. All parents want their children to have a good education and give themselves a good start in life.  Aimee accomplished that and we’ll be paying for quite a while.  Today, I look at my daughter and I see an independent, attractive, elegant, stunning young woman. She obviously takes after her mother.
Of course she inherits other traits from me…

·       her cooking…
·       her like of one or two small drinks…
·       her ability to induce others to clean up her messes…
·       her obsessive compulsive need to control…
·       her allergy to people’s bullshit…she, like dad, both have built in detectors and reject that which is false and pretentious
·       her appreciation for the finer things in life (though we disagree about the meaning of finer)
    She learned compassion, sympathy and a zest for living from her brother. She has learned about unconditional and unwavering love from her mother.  She gets her intelligence and drive from both mom and dad…that is the politically right thing to say!
    And, she has well learned about the intricacies of politics from her love, Tony!  Thank god, we’re all on the same page!!!  (four more years!!)



TONY
     Every Father hopes his daughter will find an accomplished, sensible, loving and compassionate  partner and as much as you try not to interfere in their lives, you always hope your children will make the right choices in life.  Aimee, thanks to the power and intention of universal energy, chose Tony.
   I have found that Tony is compassionate, sensitive, loving, intelligent and one hell of a singer.  I am so impressed by Tony’s ability to engage Adam…this a trait and quality of humanity that I rarely encounter in many people.  It is for those and many other reasons, that I welcome you and your family into ours.
     Tony, I hope that you will be able to keep my daughter in the lifestyle to which she has become accustomed and desires.   I’m not sure that either of us knows or understands the depths of princess-hood. To help you with your marriage, I thought I would give you some advice based on my 31 year experience of married life.
    Marriage will teach you many things… loyalty…self restraint…obedience…I am still in daily training on these matters.
     There is no challenge in a marriage that can’t be overcome by one or more of the following:
·       I was wrong!
·       You were right!
·       Yes Dear
·       I love you!
     Finally, never go to bed in the middle of an argument – be a man, stay up and fight and watch some sports or play Angry Birds. You’ve lost anyway, so you might as well get it over with.
    I would just like to leave you with this thought…
     The actor Richard Burton once said that ‘a woman accepts a man for what he is and then spends the rest of her life trying to change him.’… So, if we can all take one last look at Tony as we know him because Aimee’s remodeling work starts first thing in the morning.
Finally, this day is magic.  I believe in magic.  I see magic in their eyes, in their touch, in their embrace …they are magic unfolding in front of us.  It’s the way things should be!  It’s the way things are meant to be…magic!


Sunday, November 4, 2012

The Wedding......A Time for Magic

       My daughter, Aimee wed Tony Iannotti on November 3, 2012.  It was a day of magic, awe and wonder.  Sharing a few photos of the day:
Pre-Wedding Preparations

Groomsmen with Aimee and Tony

Bridesmaids with Aimee and Tony

Mon, Dad, Adam and Aimee

Mom, Dad, and the uber-groomsman (Adam)






The Moment

Our Princess!!

Now, Mr and Mrs. Iannotti

One of many floral arrangements (this one for the vows)

Post Wedding breakfast

Dealing with pre-nuptial anxiety

The products of pre-nuptial anxiety



THE BLESSING GIVEN BY THE FATHER OF THE BRIDE (me)

Apache Wedding Blessing
Now you will feel no rain, for each of you will be shelter for the other. Now you will feel no cold, for each of you will be warmth to the other. Now there will be no loneliness, for each of you will be companion to the other. Now you are two persons, but there is only one life before you. May beauty surround you both in the journey ahead and through all the years, may happiness be your companion and your days together be good and long upon the earth.   Treat yourselves and each other with respect, and remind yourselves often of what brought you together. Give the highest priority to the tenderness, gentleness and kindness that your connection deserves. When frustration, difficult and fear assail your relationship – as they threaten all relationships at one time or another – remember to focus on what is right between you, not only the part which seems wrong. In this way, you can ride out the storms when clouds hide the face of the sun in your lives – remembering that even if you lose sight of it for a moment, the sun is still there. And if each of you takes responsibility for the quality of your life together, it will be marked by abundance and delight.

In the middle of the party that never ends.....Aimee, Tony, Juli at the Coonamesett Inn
Falmouth, MA 











Friday, November 2, 2012

The Slippery Slope Argument ....or the Camel's Nose: MA Question 2

       People die.  Our parents die, our siblings die, our children die, we all die....  It may be the final end, it maybe a transition, it maybe the prelude to the next life, it may be heaven or hell ... no proofs, just a wide disparity of beliefs.  I wrote extensively about Question 2 earlier in the month.

      Massachusetts voters are considering a ballot initiative in less than a week:  Death with Dignity, Physician-Assisted Suicide. Lately opponents are placing political ads on the tube which parallel the lies and distortions of the presidential campaigns.  Vote no: because no family would be around, because no physician would be there, because no psychological evaluation is mandated. Vote no:  because you break apart 100 seconal capsules, dissolve in water and drink.  Vote no: because of the slippery slope:  the terminally ill, then soon the disabled, then soon anyone a burden to society, then....we are the Netherlands.  This I believe stems from a rampant sense of unreal projection.       

One pernicious category of imaginary risks involves those created by users of the dreaded “slippery slope” arguments. Such arguments are dangerous because they are popular, versatile and often convincing, yet completely fallacious. Worse, they are creeping into an arena that should be above this sort of thing: physician-assisted suicide for the terminally ill.

"The Slippery Slope is a fallacy in which a person asserts that some event must inevitably follow from another without any argument for the inevitability of the event in question. In most cases, there are a series of steps or gradations between one event and the one in question and no reason is given as to why the intervening steps or gradations will simply be bypassed. This "argument" has the following form:

Event X has occurred (or will or might occur).
Therefore event Y will inevitably happen.

This sort of "reasoning" is fallacious because there is no reason to believe that one event must inevitably follow from another without an argument for such a claim. This is especially clear in cases in which there is a significant number of steps or gradations between one event and another." The Nizkor Project


There is no evidence for the "slippery slope" or "camel's nose" argument in any place in the United States which has approved the "Death with Dignity" initiative.  Disability advocacy groups oppose Question 2, often on the basis of "the slippery slope" argument.  The disabled are not terminally ill; to equate disability with terminal illness is an insult.  Terminally ill people are often disabled to some degree.  There is no necessary or appropriate equation between the two states of living.


The lack of safeguards is an argument more reminiscent of a "salami slicing" strategy.  True, there does not need to be family nor a physician present and 100 capsules of seconal are dissolved in water and drank.  Some dying people would want family there to say a final good-bye; others might not....so what?  It's part of choice.  Play into people's fears to defeat an initiative?

How can this deception occur? Look to the money funnel: "In order to launch their "no" campaign, they (opponents) accepted critical seed money from two anti-gay groups: the American Family Association and the American Principles Project. The American Family Association was named a hate group by the Southern Poverty Law Center for their extremist actions, "including publicizing companies that have pro-gay policies and organizing boycotts against them."

Two requests for a lethal prescription, another witnessed request in writing, a determination by the physician that the patient is mentally competent to make medical decisions and a review by a second physician. A psychiatric evaluation may be required if needed. And a confirmed diagnosis of terminal within 6 months.  Quite a series of safeguards!

Yes, doctors make frequent mistakes.  Terminal in six months could translate to terminal in 6 years.  The lethal prescription is an option when life is intolerable or pain unrelenting and intractable.  I would doubt that many would choose to use the script if they are moderately ill or in manageable pain. People given the prescription do not always use it.  People know when death is near.  People know
when they can no longer tolerate life. This experience is quite subjective.  Hospice and palliative care are not ALWAYS an answer nor a solution, but a compliment to physician-assisted suicide.

"However, when looking at the statistics from Washington and Oregon, it appears that terminally ill patients are not choosing the DWDA program as an alternative to hospice care but as a compliment. The majority of patients who ingest DWDA medications are also enrolled in hospice care; 83% in Washington and 97% in Oregon." Barton Associates, Locum Tenens Experts, 10/29/2012


If you are opposed on moral or ethical grounds, do not prevent people of differing ethics or morality from the exercise of choice. If you advocate for the "slippery slope" position, realize that this is a philosophical and epistemological fallacy...."extraordinary claims require extraordinary proofs" (Hitchens, C)

A good life should lead to a "good death."  No person should be forced to endure a "bad death"; no person should be deprived of choice because of the fears of some.  Yes, I acknowledge that good people will disagree, but do not allow disagreement to preclude choice of a "good death."

Comments are disabled; tomorrow is Aimee's wedding then will post pictures.
       

Tuesday, October 30, 2012

Gone.....(Sandy, that is...)

       Sandy came and went from Cape Cod!  80 mph gusts of wind, one-tenth of an inch of rain, mucho coastal flooding and we did not lose electricity or INTERNET!  Someone is taking care of us!  Today, clear skies and sun!




High tide Monday at peak of "hurricane"


Monday, October 22, 2012

Making a Case For......

Motherly love, fatherly love....


America has a shameful history of cutting off people with disabilities from the rest of society by sequestering them outside their homes in "group homes" , or consigning them to isolated, often squalid institutions. 

106,000 persons with developmental disabilities lived in public and private institutions and more than 1,300,000 elders and persons with disabilities lived in nursing facilities in the year 2000. In addition, data on the outcomes of consumer-directed mental health services and intensive case management models show that most of the 58,000 persons currently confined in psychiatric institutions could be supported in their own homes in the community. The persons who fill the more than 800,000 licensed board and care beds in the United States could also live in the community (Olmstead, Reclaiming Institutionalized Lives)

Motherly love, fatherly love, family love, so-called religious people who love....no person with disabilities should ever be institutionalized, ever.  In a society, as great as ours pretends to be, we should be able to care for those who need the most, and they don't need much other than genuine care.  There need to be no institutions for the disabled (except for the most severely medically compromised) as long as there are parents, families, religious believers, humanitarians. 

Our glass of wine, our vacation, our free time, our right to rest, our need to have our own life, our belief that we should live unfettered of human responsibility ... all denigrate the value of human life.

"Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction."  Elie Weisel, 1999


We need an ethic of care and compassion as evidenced by the reality that every disabled person is lovingly cared for in a home.  Without this ethic, our society, our religions, our faiths are a sham and a disguise for our indifference.  We must close institutions and care for our own species without excuse and without a reason that we cannot.  It is our imperative as humans!



Tuesday, October 2, 2012

YES on Question 2 (MA): Death with Dignity

     On November 6, 2012, Massachusetts residents will be faced with a Ballot Initiative (Number 2) which is referred to as "Death with Dignity."  Simply described, it would allow a licensed physician to prescribe a lethal dose of medication to a terminally ill adult patient who meets specified legal criteria.  The terminally ill patient is any adult person who has a prognosis of death within six months.  The person must be deemed mentally competent by their physician, defined as someone who can make and communicate medical decisions .  The request for the lethal prescription must be made twice orally and then witnessed and presented as a written request.  Also, there must  be 15 days between the initial oral  request and the second oral and written, witnessed requests.  The terminal diagnosis and capacity to make medical decisions must also be verified by a second physician.  Many other safe guards, including a provision for allowing for "unwilling providers", are detailed in the law. 
      Numerous bloggers and disability advocates, for whom I have the highest respect and admiration, are strongly opposed to this measure.  Steve Drake and Diane Coleman of Not Yet Dead, John Kelly (Massachusetts)  of Second Thoughts, and Bill Peace of Bad Cripple have advanced very cogent arguments in opposition to physician-assisted suicide.  The Massachusetts Medical Society is equally adamant in its opposition. 
      While the Archdiocese of Boston is opposed to this ballot initiative, I dispose of their arguments and resent their intrusion into the debate. The cardinal's reference to Mother Theresa and her care for the dying reeks of hypocrisy.   MT, with millions in the bank, ministered to the dying of Calcutta not with medication to relieve the pain but with the admonition that they should suffer and smile and enjoin the redemptive suffering of Jesus.  The Cardinal's extraordinary claims demand extraordinary proofs which are profoundly absent .
       I am the father and caregiver of a severely disabled son and I do not want to in any way infer that this ballot initiative applies to the disabled community or anyone other than a terminally ill and dying adult person.  I believe that life and the life source is sacred and that every effort be made and every service be provided to enhance, value and treasure the disabled, the elderly and the ill.  Human compassion should have no boundary.
      The above opponents of this ballot initiative articulate sound reasons for a defeat of the initiative.  They claim that physician assisted suicide devalues the disabled and that there are alternatives like hospice and palliative care.  They claim the law provides insufficient safeguards against unscrupulous relatives.  Existing reality allows for Advanced Directives, for DNR's and suicide is not illegal. Questions arise about the accuracy of terminal diagnosis.  Other questions are driven by the facts that society fails to provide necessary supports for the dying, necessary pain relief and a high quality of care which re-affirms the dignity of the person.  Issues arise which attest to the facts that the dying consider themselves or society considers them a burden, emotionally and financially. Big Pharma and health insurance companies are portrayed as agents of death.  Not insignificant among the arguments is that of the "slippery slope."  I will not attempt to refute any of these arguments. Many are possible, many may be minimally accurate, some are "straw man" arguments.  They are arguments about groups, about generic values, about assumptions of choice of death over life.  Few reservations allow for a respect on individual decision-making.
       I was initially opposed to Question 2, now I am very much in favor of the ballot initiative...I believe that death is a highly personal experience, and it can be excruciating and drawn out for the individual who is ill and for their families. Sometimes what is best and right for the individual is to claim that moment of death for themselves, knowing they are freeing themselves from...needless pain and suffering.  Words like intractable, unrelenting, intolerable, insufferable, agonizing, torturesome, unbearable describe a human being racked with unremitting anguish.  Is there a time when life is not worth living?  Is this not a subjective experience of the soul which the person should be allowed to terminate?  Who gives any person the right to say "you must live within the confines of a body when your soul has already left?"

       It is important to probe the depths of human experience .  Some people embrace infirmity, disability and pain.  They value every moment of existence.  They inspire, they overcome, they are men and women of strength and spirit, even in facing their ultimate demise.  Not everyone is so, not everyone should be expected to be so or commanded to be so.  All the supports and medications 
should not deprive a person of his or her right to say, this is enough!
     Furthermore, it is argued, we ourselves have an obligation to relieve the suffering of our fellow human beings and to respect their dignity. Lying in our hospitals today are people afflicted with excruciatingly painful and terminal conditions and diseases. They can only look forward to lives filled with yet more suffering, degradation, and deterioration in the short term. When such people beg for a merciful end to their pain, it is cruel and inhumane to refuse their pleas. Compassion demands that we comply and cooperate.

      Modern science and technology have extended life, sometimes with unendurable pain, long beyond what nature intended.  The body and the psyche is not limitless; pain and agony is not always amenable to amelioration.  Many treatments are more noxious than the disease itself.  Nature has provided a relief from terminal illness, a peaceful death. Neither nature nor human dignit  require that  persons lie  unattended and in agony  in poorly staffed and uncaring facilities drugged into semi-consciousness. This situation is unacceptable and immoral, but it is a reality.  For some, hospice and palliative care are sufficient and, for some, merely extending life is dispassionate.  The more science intrudes in the processes of nature, the more we fight to allow the inevitable to occur with peace.
      My choice to terminate my life in the face of a terminal disease without excruciating suffering is my decision.  It reflects not on my family, my supports, my level of medication, the aged population or the disabled community.  It reflects on MY desire to leave in peace when faced with the inevitable.  It is often said that the soul leaves before the body, so the shell is left to deteriorate in agony.  I would doubt that a loving, caring deity would deny me a peaceful death nor judge my decision.  How can a voter deny me the right to request medical assistance is make the passing peaceful.

       Many will ask the question, is death ever preferable to life?  A better question, perhaps, could be framed:  is life ever preferable to a bad death.  No one should ever have to die a bad death...that is the crux of Question 2,  "Death with Dignity."  And the role of physician as healer?  It does not conflict with facilitating a good death; it is very consonant with preventing a bad death experience.
       Please vote yes, in Massachusetts, on Question 2, "Death with Dignity."
       Additional resources which answer objections of opponents.




Friday, September 14, 2012

Parasites

    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 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!"

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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