Join us for a conversation about the Convention on the Rights of Persons w/ Disabilities on May 15 @12pm

More info & registration to attend here.

https://www.eventbrite.com/e/a-conversation-about-the-convention-on-the-rights-of-persons-wdisabilities-tickets-45906726254

See you there!

Separate & Unequal

https://www.linkedin.com/pulse/separate-unequal-phil-kongtcheu/

Spaulding Innovation Challenge - eMotionRx - Pioneering Empowering mobility with affordable, cool, self-powered exoskeletons

Spaulding Innovation Challenge

I have been very fortunate to be involved with Spaulding Hospital since 2014, first as a patient, then as an adaptive sports participant (Ski & Track and Field), and then in fundraising efforts/ panels. I also have been involved in bringing them into my own R&D venture for using exoskeletons as rehabilitative devices for individuals with various mobility impairments.

I am very humbled to have been invited to submit to their $150K innovation challenge contest. Please check it out. It contains additional links about what I am doing/have done in this area. If you have questions about what you see on our submission , I would be very grateful if you'd make comments or ask questions on the site, as provided. and like what you see,please, please vote for my submission.

While I have got great feedback from the official judge, this Contest is unique in that it is decided based on how many people vote for each submission, so every vote counts. Voting is easy, just click on this link . Feel also free to share as you feel inclined to.
Links:
https://spauldingchallenge.com/posts/9061
http://www.emotionrx.com

Cambridge Commision for Persons with Disabilities

Friends, I just wanted to share that I was recently nominated and appointed to serve on the advisory board of the Cambridge Commission for Persons with Disabilities for a term of three (3) years starting January 1, 2018. 

If you live in Cambridge, or that in this role, I can support you or what you do in any way shape or form, please do not hesitate to reach out to me.

https://www.cambridgema.gov/DHSP/programsforadults/ccpd

Celebrating the life of an "invisible" in the fight against polio: Dr. Julius Youngner (Oct 24, 1920 - April 27, 2017)

I am drawn to highlight the life of Dr. Youngner at the news of his passing, reading the account of his contribution to the Salk Polio vaccine in 1955.

The fight to eradicate polio had many unsung heroes, and it sounds very much like he was one such. It sounds like Dr. Salk was not so fair to him.

May he rest in piece.

I am linking here a highly educational and fascinating interview, particularly starting at the 42nd minute on the development of the vaccine and the cases of vaccine induced polio.

Notice also the story of virus after improper inactivation batches starting around that 42nd minute at the Cutter Labs in Oakland CA what is known as the Cutter incident from Cutter Labs produce vaccine because Salk would not report the problem with the method of production of the vaccine so as not to ever so slightly dim his glory. Apparently the result was 250 kids unnecessarily died (or 10? and 164 paralyzed). The Cutter incident seems to be the seeds of the anti vaccine movement.

The Sabin Vaccine (live polio) apparently was what caused the cases of Vaccine Induced Polio after the 60s, as it was the form most prevalent from the early 60s until 2000 when the US switched back to inactivated version of the vaccine (Salk variety of the vaccine)

Listen also to his interview on soundcloud.

On Vaccines & Freedom of Choice & Donald Trump & The Right to be Skeptical & Ask Inconvenient Questions

             I am very proud that Harvardwood Press has published its anthology containing my short story "Too Much," on how I got polio, and I invite all friends to get a copy of it. Indeed I got polio AFTER getting the polio vaccine, in one of the cases known as Vaccine Induced Polio (VIP) coupled with medical malpractice and contemptuous medical behavior. See WHO link to the various forms of vaccine related polio infections)

   
              I am prompted to write this post after watching this video report that the NY Times has just published  taking issue with Donald Trumps take on vaccines, and their relationship to autism.

     
              While I may disagree with Trump on many many issues, and agree with the NY Times on perhaps many more issues, based on my own life experience with polio, I could not help but be more sympathetic to Trump's arguments during that debate, especially as there has been recent speculation that Trump's youngest son, Baron, is autistic. This may also explain why this may be a side issue that is emotionally very resonant and for which the pain is personal. I know this firsthand having written about how skeptics of polio vaccines are being treated, and proposing solutions for those who end up being harmed by vaccines in general. This is a complex debate, and the arguments for vaccines are overwhelming. Indeed, I am all for vaccines, done safely.  I also believe means for the very small percentage who get harmed by those vaccines so that the greater number shall live safe must be cared for and their sacrifice acknoleged and somehow compensated.

         Having watched the debate where Trump actually made those remarks, (see above) and the full context within which those remarks were made, I do find  that the NY Times segment unfairly caricatures Trump's positions on the issue, and fails to put them into the context Trump clearly explained at the debate.

         This is in my view one more instance where the mainstream media -- which failed to take Trump seriously even when our analysis as early as the spring based on our theory of Humor in politics showed clearly that he might win  an upset victory --  does itself disservice, and fails to capture "reality," and is very intolerant of dissenting opinions, self righteously -- but perhaps ultimately wrongly -- out-casting them.

        To note, in France on this February 8, 2017, the "Conseil d'Etat," the highest court that decides disputes involving the French Government just issued a ruling compelling the governemnt to swiftly make availble unbundled vaccines that separate the mandatory vaccines in France, those against Diphteria, Teanos and Polio (DTP) from the optional ones (i.e against Whooping Cough (Coqueluche), Hepatitis B, and Influenza type B.  Due to some allergic reactions, the pure DTP vaccines had been withdrawn from the market, so that everyone was compelled by default to have their child vaccinated with the six vaccines at once. Two of my very close childhood friends who live in France  have minor children who have been diagnosed as autistic. Actually one has both of his children who are autistic.

        Anyone who follows the history of medicine, would know that today's medical prescription may well be tomorrow's medical proscriptions. Like anything in life, too much of anything, or anything taken the wrong way-- antibiotics, vaccines -- is potentially harmful.
       
          Saying so should not lead to opprobrium. Alas powerful interests!

Polio & The Development of the Field of Physical Therapy

I just wanted to share this remarkable article by Donald A. Neumann, PT, PhD in the Journal of Orthopaedic & Sports Physical Therapy, 2004 Volume:34 Issue:8 Pages:479–492  titled: Historical Perspective—Polio: Its Impact on the People of the United States and the Emerging Profession of Physical Therapy showing how the field of physical therapy emerged as a profession as a result of to address the public health challenge posed by the epidemic of polio in the first part of the 20th century in the United States.

Writes the author: "the polio epidemic was one of the most influential factors to transform a profession of revered ‘‘reconstruction aides’’ of the First World War era ... to a profession of physical therapists as recognized today. From the design of the Hubbard tank to the evolution of manual muscle testing, our response to treating persons with polio has left many permanent impressions on the practice of physical therapy, both technical and philosophical"

Article Abstract: 

Admittedly, it may appear incongruous that a review of a disease that infected the nervous system of persons in the first half of the twentieth century would appear in the Journal of Orthopaedic & Sports Physical Therapy at the start of the twenty-first century. As will be described, however, most of the physical therapy procedures developed during the polio epidemic involved muscles and their interaction with the skeletal system. Many of the treatments and rehabilitation philosophies created during this time are still very evident today. The “polio days” presented an enormous challenge and an equally enormous opportunity for the budding profession of physical therapy.
Much of the growth had to do with timing. Managing the rehabilitation of hundreds of thousands of persons, many in the prime of their own lives or careers, required just the services that a physical therapist could potentially provide. In essence, the polio epidemic created a unique void in the medical arena-a void that was filled by the rapid expansion of the profession of physical therapy.
A full appreciation of the impact that the polio epidemic had on the profession requires a history lesson of the many interrelated and concurrent events that transpired in this country between 1916 and 1955. Within these turbulent times, the United States experienced 2 world wars, the Great Depression, the Korean War, and the insidious rise and swift fall of the polio epidemic-one of the most significant public health epidemics ever to strike the United States. For more than 2 decades leading up to the success of the Salk vaccine in 1955, the treatment and care of persons with polio dominated virtually every aspect of the physical therapy profession.
The full story of how the growth, politics, philosophy, and even “personality” of physical therapy were shaped by the interactions between physical therapists and those infected by polio has been well chronicled. Two notable works are a recent article by Dr Marilyn Moffat and a very well presented text, Healing the Generations: A History of Physical Therapy and the American Physical Therapy Association, by Ms Wendy Murphy. This present historical review, intentionally less global than the aforementioned works, focuses more on the poliovirus itself, its impact on those it infected, and, most importantly, on several important lessons and benefits gained by the profession's steadfast involvement with the epidemic.
J Orthop Sports Phys Ther. 2004;34(8):479–492. doi:10.2519/jospt.2004.0301

Keyword: polio, physical therapy

Senator Mitch McConnell who survived polio speaking of it as "an early lesson in hard work tenacity & sticking to it"

Senator Mitch McConnell who survived polio speaking of it as "an early lesson in hard work tenacity & sticking to it."
He was treated at the President Roosevelt's Rehabilitation Institute in Warms Springs & made a total recovery.

http://www.wave3.com/story/3200510/decades-after-recovering-from-polio-senator-marks-vaccines-anniversary 

I could not agree more with him on this point. For this reason and this reason alone, I recommend his book: "The Long Game"

Highlighting an inspirational figure in the fight against polio: Denis Ogbe

Denis Ogbe, Making me want to be better...

I laud your example.

And will cheer your successes

Read his story with polio here

http://dennisogbe.com/

Polio, Polio Misfortunes & Stories on Why some are skeptical of polio vaccine - The Need for Vaccine Insurance Funds to regain Skeptics confidence

The Need for Vaccine Insurance Funds to regain Skeptics' confidence

Someone very dear has shared some of these stories with me, and I feel it is important to share them here, for the general reader to understand the general context in which some come to be suspicious of vaccines, and why their hesitation must not be dismissed in the scientific community and in news reports as the behavior of cranks, unenlightened luddites or otherwise backward minds.  The example here, from NPR, about Why Chinese Parents Don't Necessarily Trust Childhood Vaccines is a perfect illustration.

Because when such concerns are dismissed out of hand, that is when uncooperative or violent behavior takes root, as happened regrettably, recently in Pakistan, out of frustration with established public or medical authorities.

Mistakes happen, that is true. But failing to fairly acknowledge responsibilities for those only make bad situations worse. In particular, developing institutional structures that facilitate the care and just financial compensation for those who have been unjustly victimized is perhaps, one of the only ways to compassionately and  justly moving forward.

If those who are adversely affected by the polio vaccine, or any other, why not create Insurance funds, whose premium are funded the supplier of vaccines, that would provide compensation to those adversely affected?

How would such a fund work? Well, if every vaccine that is sold is taxed a tyny amount that is deposited in a specially established fund, the fund would end up being more than adequately funded.
When an allegation of vaccine induce illness is alleged, the claim would be reviewed, and if found to be credible, the victim would promptly receive just compensation from the fund. THese funds can be established both locally or globally, or in a scheme that combines both.

In financial risk management, what we have here is what is known as the fallacies of Value-at-Risk (VAR)  risk management. Value at  Risk is a risk management concept which aims at quantifying maximum value at Risk within given confidence levels. In this scenario proper risk management proper risk management sets limits on VAR, and account manger must maximize value with set VAR limits. For example a portfolio manager may be given 99% VAR of one million dollars. That means that the portfolio manager must maximize the return on their portfolio while limiting the risk in their position so that maximum amount they can loose a maximum of one million dollars with a probability no less than 99%.


In vaccine risk management, the underlying argument is that vaccine work and save millions of lives in more than 99% of cases, therefore they should be mandatory and beyond criticism. The problem with that analytical framework is the same as that happened with all those who swore by VAR based risk management. Sooner enough, the discounted one patient risky scenario occurred, leading to financial crises and serial bankruptcies such as what happened in 1987, and more recently with the great recession of 2008-2009.

What we speak of here is the discounted one percent scenario on vaccines that bankrupts and lead to systemic


Also, other related stories:

Is it the end for polio as a new vaccine is introduced? :http://www.bbc.co.uk/news/health-36076991

Vaccine switched in 'milestone' towards ending polio - http://www.bbc.co.uk/news/health-36055507 

History of polio - http://www.bbc.co.uk/news/health-17045202 

NPR Story on China: http://www.npr.org/sections/goatsandsoda/2016/04/25/475629964/why-chinese-parents-dont-necessarily-trust-childhood-vaccines?sc=tw

Vaccine Induced Polio

           I got polio as a child. It was not because I was not vaccinated. It was precisely because I got vaccinated against polio, in a case of Vaccine Induced Polio (VIP) or Vaccine Associated Paralytic Polio (VAPP). Every time someone told my mother that my paralyzed legs were due to polio, she would staunchly deny it. She had vaccinated her child. Based on that premise it was thus impossible that I had had polio. In her view it was the "Quinimax" injection I received when I arrived at the hospital with high fever, screaaming of pain, that caused it. For years after she would refuse any needle injection on me. When I arrived in France in 1990, I was told by a French physician who was stationed in Africa that indeed my condition told me it was indeed polio that I had and that "the inconvenient truth" was that it was most likely have been induced by the polio vaccine that I received. I just want to collect here a few videos that I have found of similarly afflicted individuals who have made postings on youtube, and I pay tribute to their courage.

Jamie Fowler's Inspirational Story

The Tremante Family tragedy:

Hoping that this injustice will one day fully be acknowledged...

Tribute To An inspirational Life: The Life of Mark O'Brien

 Why do we read about the life of other people? In the most positive sense, we try to learn about the life of others to gain insights that will guide us and inspire us in leading our own lives.

I have had the intent of writing an essay about this inspirational figure of mine for quite a while. I discovered him by accident rather late, in 2011, after I had ended up in a nursing home in Secaucus, New Jersey. 

The summer was on its wane, and I had escaped to Manhattan. I was visiting the DVD section of the mid-Manhattan New York Library Public Library, rolling on my wheelchair, feeling sorry for myself, when my eyes were stirred by the cover of a singular DVD. At first I thought it was an astronaut of some sort. I have always had that unfulfilled dash for space exploration. In another place at another time I had once fancied myself as the one who would first set foot on Mars - since someone had beaten me to the moon. 

But then the grand eponymous title made that presumption oxymoronic. Breathing Lessons: The Life and Work of Mark O'Brien.

 

I checked with apprehension. Spoiled ignorant me who had lived in such fortunate circumstances as not to even to know what an Iron Lung was!

 

Before I go any further on this , I just want to pause to say thanks to my Physical Therapist at Spaulding Rehabilitation Hospital, Anna Schroepfer Kandoyan, where I have been receiving outpatient physical therapy for a year now, for taking the pictures above at the David J. Sencer CDC Museum in Atlanta last year to show me exactly what an iron lung looked like. I cannot thank Anna enough for all the things she has opened my eyes to over the past year. Sometimes you meet a person and, before you know it, your life has changed for the better. Anna has been such a person to me. I will probably write a separate post and on Anna and my "Spaulding family" at another time. 

Back to O'Brien.

I quickly borrowed the DVD and watched it several times that night. I went online and checked all references about him. I found out that he was a poet!  He had written, no, he had sung, from the cage that had constricted him all his life, great songs of freedom; that man for whom the basic act of breathing could be a most canutian task. 

The man in the iron Lung, Mark O'Brien (July 31, 1949 – July 4, 1999) was a journalist, poet, and advocate for the disabled. He contracted polio in 1955, very unfortunately it seems,  just after the polio vaccine was discovered,  and spent the rest of his life paralyzed and requiring an iron lung

After a number of years in a nursing home, he managed, still in an the iron lung, to attend UC Berkeley. He produced poetry and articles, and became an advocate for disabled people.

He co-founded a small publishing house, Lemonade Factory, dedicated to poetry written by people with disabilities.

He wrote of several volumes of poetry, including Breathing, and an autobiography entitled, How I Became a Human Being: A Disabled Man’s Quest for Independence.

So far there have been two Oscar/ Academy Award nominated movies about his life. The first one that introduced him to me was the 36 minutes documentary I refer to above, Breathing Lessons: The Life and Work of Mark O'Brien by Jessica Yu, that won an Oscar in 1997. The second one The Sessions is a 2012 feature film written and directed by Ben Lewin. It is based on O'Brien's article "On Seeing a Sex Surrogate" describing his experience hiring a sex surrogate to lose his virginity. John Hawkes and Helen Hunt star as O'Brien and sex surrogate Cheryl Cohen-Greene, respectively.
The film debuted at the 2012 Sundance Film Festival, where it won the Audience Award (U.S. Dramatic) and a U.S. Dramatic Special Jury Prize for Ensemble Acting. The Sessions received highly positive reviews from critics, in particular lauding the performances of Hawkes and Hunt. Hunt was nominated for the Academy Award for Best Performance by an Actress in a Supporting Role at the 85th Academy Awards (for 2012 films).

We often believe that it is through therapy and medications that we get better or healthier. I have always believed that people who move me, and inspire me to be better, do for me, over the long run, far more that any medicine, any treatment, any therapy could ever aspire to. It was a most serendipitous development for me to be engrossed about the circumstance of this figure at that particular time, in those particular circumstances.

His dignity, and yet the openness with which he had engaged the most private and dehumanizing aspect of the long, simmering suffering that had been his whole life, elevated a heroic dimension on an almost Christ like scale.

Through his example, the closet poet that I had been in my soul for a while found the courage to commit to writing, both as an artistic form of self expression, and as a means of self healing. I committed to write of things that mattered to me, but in a way that enrich the human awareness of universal issues. 

This led me to a journey of open and unbounded creative artistic exploration that continues to this day. In the process, I regained a more optimistic outlook on life, a sense of grace, and gratefulness for all that I had been gifted with, and which I had never fully taken stock of. I gained resolve, and a more resolute sense of purpose.

I write this post to express that profound feeling of gratitude for him having shared a life that could  light a flicker of hope in my own life at a time of darkness, but also in the hope that his example could inspire others to do better. If he could endure what he did endure - I always try to remind myself when alone with my own conscience - how do I dare complain too much? 

I try to remind myself to be committed to the task of forcefully pushing for the rights of weak and disenfranchised as aggressively as O'Brien did, to vigorously push against all those who take advantage of perceived weakness of the less well endowed, to enable the marginalized live fully enjoyed and fulfilled and productive lives, to the maximum of their attainable abilities.  

 If he could achieve all that he did achieve, in the circumstances he was reduced to, how do I measure?

We do not always control the circumstances of our life, the forks our lives take that stray us from the path which we may feel destiny had otherwise chartered for us. Whatever happens, what Mark O'Brien demonstrated was that as long as the mind remains cognizant and engaged, we can choose courage, dignity,  we can choose to continue to contribute to the edification of a better human kind that will outlast the degeneration of our wretched bodies.And that is a worthwhile ideal to aspire to.

Defeating Polio, The Disease That Paralyzed America - 60 year anniversay of Salk vacine

Defeating Polio, The Disease That Paralyzed America - 60 year anniversay of Salk vacine

Great NPR story on this too soon forgotten human drama....

Abilities Expo - A resource to check out

Abilities Expo is a great place to go to check out what new development are occurring in the industry. I was there at the Boston Expo in September and it opened a new world for me. The expo go  to different parts of the country at different times of the year. Check the one near you. There is just an incredible variety of service providers going to these event. They do doing amazing things that are not publicly known, from new assistive devices to assistive sports to very support organizations, you are likely to find them there.
Check the link at: http://www.abilitiesexpo.com/

Another Surgery in Beijing - March 21, 2014 - From Ankle to Femur

 Spent time this spring at the  National Research Center for Rehabilitation Technical Aids in Beijing for another set of surgeries with Prof. Qin Sihe. See:

China - National Research Center for Rehabilitation Technical Aids - Surgery Report
Great place where all the best in Orthopedic Research in China appear now to have been centralized. It combines not only the presence of the best orthopedic surgeons, but also, the best physical and occupational therapy programs to be found in China, together with the best orthotics, all centralized in one place.

Received great treatment there, for which I was much grateful.

One step at a time, we get there..

http://www.gjkfyy.com/_d276632469.htm 



Philibert Kongtcheu

Psychological Booster

Hometown profile.

Becoming an Empowered Patient

This post is prompted by the interview of the book "The Empowered Patient" by Elizabeth Cohen.

I like the theme of such books because they are particularly appropriate for people with unusual conditions or diseases. Most of the time the treating physicians one goes to see have very little familiarity with your condition. In this context, it is particularly important to do extensive research on one's condition, actively look for the right physicians and learn to listen to one's body to channel physicians' help in the right direction.

In particular for complex conditions such as paralytic polio sequelae, one must break the treatment into different specialties and seek the help of each specialist to address the specific symptom. In this case one must act as a general manager who uses various specialists as consultants.

Indeed for the sufferers of the various sequelae and after effect of polio, this is particularly the case.

Electrical Muscle Stimulators: A reassessment

One of the tools that can at minimal cost enhance the physical strength of individuals with diseases that leave muscles atrophied is electrical muscle stimulators.

In the 60s and 70s such devices were recommended on paralytic polio children in developing countries. However, misdirected expectations and lack of understanding sometimes led to disastrous results. For many children who had already lost all muscle functions in some areas such as the quadriceps muscles,repeated electric muscle stimulation only led to further atrophy and further weakened the leg. In other instances, there voltage mis-calibration issues that led to similar results. As a result such tools stopped being recommended to post polio paralytic patients in countries where the condition is still prevalent such as Africa or in China. In fact in the Post Polio re-habiliatation prescriptions, EMS are still viewed as unreliably bettering patients' condition. Reliable empirical information is scarce and reasonable theories led to questioning any claim of improvement.

In China where surgical practice via muscle transfer help functionally recreate basic lost muscle function, very often muscle strength gained via such procedures still fall quite short of normal strength. Here, aggressive physical therapy can help carry the base strength gained quite a long way. A quite affordable component of such physical therapy rehabilitation process is the use of electrical muscle stimulators or EMS. See Reference and refences within.

Nowadays there are many relatively inexpensive and easily portable versions of such muscle stimulators with electronically calibrated voltage that can even be carried under clothes and programmed at various level of strength with various alternating combination of stimulation and rest. I've shown some commercial examples below. By targeting areas where basic muscle strength exist, significant muscle growth can be gained.

Unfortunately in many developing countries there is limited awareness nowadays of the possible gradual improvements that are possible. My own recent experience has so far delivered tangible and measurable progress.

References:

Warning on the use of Threshold Electrical Stimulator (TES) on post polio patients:
http://www.englewoodhospital.com/pdf/polio_library/tes.pdf
Note that our personal finding here is on post muscle transfer surgery patients such as myself

Stories that break the heart and warm it up at the same time

And she is so beautiful!

I don't know what is the root for her scoliosis and her muscular atrophies, but these are the typical sequelae of polio and the hospital for special surgery and the scoliosis research effort there is the most focused and one of the most advanced in the world.





http://video.nytimes.com/video/2010/04/30/nyregion/1247467746198/a-life-of-determination-and-dependence.html

AMEN

Gates Rethinks His War on Polio

AMEN.
That is all to say about this effort.
AMEN.

Soliosis - John F Kennedy Johnson Rehabilitation Institute

I spent a day today at the John F Kennedy Johnson Rehabilitation Institute in Edison NJ on a referral continuing my post summer rehabilitation treatment. During that visit I learned that continuing pain that I attributed mostly to leg discrepancy is actually due to scoliosis in my spine. I have done some research online and I found this really good site on scoliosis that I recommend to anyone interested in the condition http://www.iscoliosis.com/. They also have some great videos at http://www.iscoliosis.com/video.html?filename=exercise-exercise. Even though physical therapy provides some relief, it seems there are only two possible permanent treatment solutions to scoliosis, bracing or surgery.
Scoliosis is a frequent condition among post paralytic polio survivors.
The Hospital for Special Surgery in New York seems to be a center of excellence for the treatment of spinal conditions. See: http://www.hss.edu/spine-care-institute.asp

Check Out:

JFK Johnson Rehabilitation Institute
http://www.iscoliosis.com/
http://www.hss.edu/spine-care-institute.asp

Abdul-Jabar Speaking words I would use

I read this article with emotion. I believe his attitude should be a model for all those suffering from a chronic and possibly fatal disease.

I am trying to do the same for post polio paralytic sequelae.

I pray for Mr. Abdul-Jabar's well being. If there is one attitude that can lead to success, I think it is his attitude. TO EMULATE.

in reference to:

"Home"
- Sports of The Times - Abdul-Jabbar, a Private Man, Goes Public With His Fight Against Leukemia - NYTimes.com (view on Google Sidewiki)

Volunteer Translator Posting Tranlated in Arabic

I do not know this person, but I thank them for their effort.It is a translation of this knol: http://knol.google.com/k/phil-kongtcheu/helping-make-effective-surgical/24v2kgtuvzk2v/17#

If you know any one who wishes to participate, please let them know they can still make a difference

Op-Ed Contributor - Health Care’s Infectious Losses - NYTimes.com

Op-Ed Contributor - Health Care’s Infectious Losses - NYTimes.com

"In the end, any health care reform that does not address the pervasive waste and the associated burden of needless suffering for patients and staff alike will give us little to celebrate."

This is a very thoughtful piece that goes at the heart of sidestepped yet critical issues related to the current health care debate.

My experience with health care services in a variety of continents is that the claim that "America's health care is is the best in the world" is a piece of propaganda that is not related to the reality of the average person accessing those services. Like everywhere else it may only be the case for people with Money and/or Power.

Giving insurance to everybody without knowing what the insurance actually covers or without sound methods to control the cost of insurance via waste control as Mr. O'Neil suggests or cost effective incentives for disease preventing life styles will do very little to improve the average person's well being.

Post-polio syndrome - Wikipedia, the free encyclopedia

I just wanted to feature Post Polio Syndrome (PPS) as a specific condition more generally known in Western Countries that adds to the struggle of paralytic post polio survivors


Post-polio syndrome - Wikipedia, the free encyclopedia: "Post-polio syndrome
From Wikipedia, the free encyclopedia


Introduction

Post-polio syndrome (PPS, or post-poliomyelitis syndrome) is a condition that affects approximately 25–50% of people who have previously contracted poliomyelitis—a viral infection of the nervous system—after recovery from the initial paralytic attack. Typically the symptoms appear 15-30 years after the original infection, at an age of 35 to 60. Symptoms include acute or increased muscular weakness, pain in the muscles, and fatigue.

The precise mechanism that causes PPS is unknown. It shares many features with the post-viral chronic fatigue syndrome, but unlike that disorder it tends to be progressive, and as such can cause a tangible loss of muscle strength.[2] Treatment is primarily limited to adequate rest, conservation of available energy, and supportive measures, such as leg braces and energy-saving devices such as powered wheelchairs, analgesia (pain relief) and sleep aids.



Signs and symptoms

After a period of prolonged stability individuals who had been infected and recovered from polio begin to experience new signs and symptoms, characterised by muscular atrophy (decreased muscle mass), weakness, pain and fatigue in limbs that were originally affected or in limbs that didn't seem to have been affected at the time of the initial polio illness.[3] PPS is a very slowly progressing condition marked by periods of stability followed by new declines in the ability to carry out usual daily activities.[4] Most patients become aware of their decreased capacity to carry out daily routines due to significant changes in mobility, decreasing upper limb function and lung capability. Fatigue is often the most disabling symptom; even slight exertion often produces disabling fatigue and can also intensify other symptoms.[5] Problems breathing or swallowing, sleep-related breathing disorders, such as sleep apnea and decreased tolerance for cold temperatures are other notable symptoms.[3]

Increased activity during intervening healthy years between the original infection and onset of PPS can amplify the symptoms. Thus, contracting poliomyelitis at a young age can result in particularly disabling PPS symptoms.[6]"