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Well, dear friends, it seems that there is a change in our HOLIDAY LUNCHEON meeting for January/February meeting……
Dr. Zilioli called me the other day to ask that he be excused as our speaker on January 17th and be our speaker at our March/April meeting (March 21st), as he had a conflict which he didn’t realize when we changed our meeting date from the usual Sunday to Saturday (I’m leaving on Sunday, January 18th, to go on a cruise).
Soooooooo, instead of a speaker for our HOLIDAY LUNCHEON, thought it might be interesting to have a Chinese Auction….., everyone attending should, please, bring a gift worth no more than $5.00. If you don’t want to take part in the “auction”, just come and join us for lunch anyway….. We will also have a rap session and enjoy each other’s company with some good conversation.
Please fill out the Reservation Form which is further along in this newsletter (this sheet is a last-minute addition).
Looking forward to seeing everyone at the Red Lobster on January 17th – and, wishing everyone a
MOST HAPPY and HEALTHY 2004!!!!
Barbara Goldstein
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Saturday, January 17th 2004 -- New Year Luncheon Meeting at Red Lobster
Speaker:- Dr. Armand Zilioli, formerly of Winter Park, will answer any
questions you may have regarding Post-Polio Syndrome. Dr.
Zilioli knows about our problems as he is one of us.
March 21st, 2004 --
May 16th, 2004 --
September 19th, 2004 --
November 21st, 2004 --
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CONTENTS
From Barbara
Change is Not About External
Events
Greyhound Bus
The Great Crippler –
Then and Now
Intimations of Immortality From
Recollections of Early
Childhood
A Few Words on Behalf of
Western Medicine
“I Wish for You”
New Social Security Policy re
Development and
Evaluation of Disability
Claims Involving Postpolio
Sequelae
Protecting your Arms Will Keep
You Moving
Friendship
Dues
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PLEASE note the change of day for our January meeting. It is being held on SATURDAY, January 17th, due to a personal obligation I have on Sunday, the 18th.
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FROM BARBARA
Well, I finally flew up to Long Island instead of driving. Changed planes in Atlanta using their wheelchair assistance. Had to change to a smaller jet which took on passengers on the tarmac sooooo, there were steps for me to go up – that was fun and games. At Islip they went into the jetport so had no problems there. However, on the trip home, the plane went to Cincinnati (not Atlanta), and there we had to disembark on the tarmac and as much fun as it was going up the steps, it was even harder going down, especially as there were snow flurries. Had to get back on by climbing up the steps again, when I reached the top, the attendant told me she wasn’t sure I was going to make it – told her that once I got half-way up I knew I would be OK…. When we reached Daytona, they were able to use a jetport so I had no more steps to worry about. I will say this – they were more than helpful at all points with respect to wheelchair assistance and getting me on each flight. You know, for some reason that I can’t figure out, I think I prefer actually driving back and forth over taking the plane === BUT, guess I’ll be doing more flying.
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Reprinted from Current Tides of the Atlantic County Post-Polio Support Group, Sept/Oct 2003 newsletter.
“Change is not about External Events”
1. Change creates fear (but the fear can be overcome.
That’s true. It’s the nature of the beast – of us, human beings. It’s the way the good Lord designed us. Fear is a normal human reaction when our security is threatened. The greater the change, the greater the fear – but the fear doesn’t have to be paralyzing.
2. Change is hard (but it’s doable).
A lot of change is about giving up or losing something or somebody you like (or love). Accepting loss is difficult. Making a change is difficult. Life is hard, but whatever the challenge, it’s not the end of the world. In fact, change leads to a new beginning and something wonderful will come of it.
3. Expect change (and enjoy it).
Life is packed with joy – it’s also full of disappointment. We often don’t get what we want. Events overtake plans; so plan the action, don’t plan the results. Change makes life exciting and fun.
4. The only person you can change is you (and nobody else).
Keep trying if you want to, but people will prove to you over and over again that they will do exactly what they think is best for them. No offense, but change is not about fixing them, it’s about changing you.
5. Courage is action (in the face of fear).
No fear, no courage. Action and fear must coexist to qualify. Courage is moving forward despite the fear – and you can do it.
6. Change is really exchange (so go for it).
Only with hindsight do we come to realize that what we gain through change is usually much better than what we lost or gave up.
7. Change is possible (even if it doesn’t feel like it).
Life isn’t fair and change often hurts like hell; but people have handled the loss of a loved one, being fired, tragic illness – even quitting cigarettes. Others, have survived, even benefited from these changes. You can too.
8. Don’t attempt major change alone – do it with an ally.
If you’re going to change, the first step is to get the support of someone you trust. It’s probably going to be three steps forward and two backward; so get the help you need to get through major transitions.
9. The answer may be acceptance (and not action).
You may have to bite the bullet and accept some things exactly as they are – unchangeable. If that’s the case, take a deep breath, yell, and start changing your attitude.
10. Change is a process (not an event).
Change is about the getting, the moving from here to there. Change is even the turmoil, the upsetness, the middle part. The goal is not even the big payoff; it’s what you experience and learn getting to it.
Going to college isn’t about history and chemistry facts and figures – it’s about learning systems, discipline, responsibility, self-starting, discovering who you are, living with others, building character, and choosing a career.
In a similar way, change isn’t about external events, it’s about the internal making and maturing of a human being. Change is about self discovery and spiritual growth.”
Excerpts from Unity Magazine, March/April 2003
Reprinted from Echo News – April/May/June 2003
FECPPSG Editor’s Note:- So many of us fight “change” in our lives. Many of us find it hard to finally realize that our lives would be more fulfilling if we started using assistive devises. So, look at what’s happening with you and, if you have to, make that change.
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GREYHOUND BUS —
For those of you who may not be aware, wheelchair accessible bus travel is now available through the Greyhound Bus Lines. However, you do need to call them at least 48 hours prior to whey you want to depart. They’ll make every effort to provide a bus with a hydraulic lift. If a bus with a lift is not available, they have a device similar to an airline aisle chair, called a Scalamobile.
You, as the passenger, have the option to transfer to a regular seat or to stay in your wheelchair. Tie down restraints are available. You are also permitted to have one attendant accompany you free of charge. Service animals are also allowed.
For further information call Greyhound’s Disability Assistance Line, toll free, at 800-752-4841.
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Reprinted with the permission of the author, Dr. Henry Hudson, of the Central Virginia Post-Polio Support Group. The article is in their August-September 2003 “Polio Deja View” newsletter.
The Great Crippler,
Then and Now
By Dr. Henry Holland
The poliovirus is a unique virus. This virus only thrives in humans. It can enter your body by an oral pathway, cause a gastrointestinal illness and leave your body with no apparent residual damage. More people had polio this way and probably never knew it. The other extreme of this virus was its success as the great crippler of children. It was also a killer of children. This virus could invade a human body and kill in a few days. Death resulted from respiratory failure or from the overwhelming viral invasion of the entire central nervous system leading to coma and death. The observed and later written observations and descriptions of children dying from acute polio are emotionally draining to read. Most of us who experienced polio did so in childhood and many were left with residual damage that set us apart from our peers. The most commonly used word to describe this damage was “crippled.” Many larger cities had hospitals for crippled children “Crippled” is a painfully accurate word. The Merriam Webster Dictionary traces “cripple or crippled” to the fourteenth century. It means:
1 : to be deprived of the use of a
limb and especially a leg
2 : to be deprived of capability for service or of strength, efficiency, or wholeness
The crippled state of polio survivors could cover a vast range of limitations. It could be something as minor as a visually undetectable weakness in one ankle to a near quadriplegia state requiring the use of a wheelchair or leg braces and crutches. Definition number one above is fairly easy to understand and comprehend. Treating the crippled state of an extremity was often easier to accomplish. Many were fortunate to be able to regain all or almost all of the use of a weakened extremity because of physical therapy and exercise. Of course now we know that undamaged motor neurons were capable of sprouting additional dendrites to innervate more damaged muscle groups and result in increased function of these previously damaged muscle groups. Even when the damage was extensive a well fitted brace would make it possible for a crippled leg to support weight and make it possible for a crippled polio child to get back on his/her feet and return to the world beyond the security of home. Returning to school, socializing with able-bodied friends, going to church, movies, soda fountains, toy stores, and playgrounds were again possible. Many of us are familiar with this pilgrimage.
I am more intrigued by the second part of the definition above. The concept of “wholeness” or a sense of “wholeness” is an important aspect of anyone’s development. If that feeling of wholeness is altered by the reality of being crippled, then the developing child and adolescent has to either withdraw from the risks of socialization or find ways to cope and defend himself/herself out in the world. I am convinced that almost all of us chose the second route; that is we engaged the world around us despite the interpersonal risks. The fruits of taking this risk surround us as we read about the accomplishments of polio survivors, know first hand about the courage and perseverance of polio survivors from our own interaction with them in support groups, and from what the able bodied have said about us.
Almost by necessity, most of us compensated for our crippled state, denied the reality of our crippled appearance, and made every effort to be normal in the normal world around us. If crippled in reality and feeling a lack of wholeness, as adolescents how did we cope with the challenges of relating to the opposite sex? Did we feel inadequate or simply uncomfortable in the social undertaking of dating? By excelling in other areas, many of us compensated and sublimated successfully in an attempt to level the social playing field. Since the vast majority of us married and worked productively, we apparently did succeed in our social and employment strivings.
Now as older adults we have had once again to face the second part of the definition above. Many of us are physically weaker, less efficient and less capable of providing service. Some probably feel less whole, and thus we are “crippled” again by Post-Polio Syndrome, the second Great Crippler. Most of us had never even imagined such an intensified decline in our overall functional state, as PPS has forced so many of us to accept. Most of us knew that we would get older, but thought that we would age more like our older family members or people we knew in the senior generation. For so many PPS has aged us prematurely. Those of us who may live alone now realize our vulnerability to losing our independence and having to find assistance in areas that most of our able bodied peers are not yet forced to face. Those of us who have able-bodied spouses are discovering that we depend on that spouse for some of the simple tasks of daily living. Our spouses are no longer young and do not always have the energy to carry the extra burden. In simple terms, all of this PPS stuff seems so unfair.
In our initial struggle with the Great Crippler, we were determined, generally optimistic, youthful in spirit, and found our way in the race of life. With this second round with the Great Crippler we are tired, not as optimistic, have to lower our expectations despite our determination, and still find our way at a slower pace in the race of life. We have all read the articles and listened to the lectures by the growing number of PPS experts, most of whom are younger than we are. We are reading more and more about the deaths of old polio survivors in our newsletters. Our numbers will continue to shrink just as the veterans of World War II; the survivors of the Holocaust and members of Tom Brokaw’s Greatest Generation will diminish. Hopefully there will be a day in this century when polio and photos of its crippled children will only be recorded in history books and historical medical texts.
We have not finished the race of life. But what is left for us to do? I think we should tell our stories and share our pilgrimage as a result of this disease. If you cannot tell your story, write about it or if artistically inclined, illustrate it. If we do not, future generations will never know. We probably would do well to establish more oral history collections within our respective support groups. I have often thought that we would do well to have a national or even an international magazine or journal that was personal and historical and not just medical and scientific. The Multiple Sclerosis Society has an excellent periodical. For so many people with the same disability, we are relatively fragmented. There are countless PPS newsletters and websites that often publish some of the same articles. To my knowledge the only national publication that serves us is Post-Polio Health (formerly Polio Network News or Gazette International Networking Institute or GINI). This publication is excellent, but is only published quarterly and is limited in size. I believe that there are many untouched and undiscovered sources of polio witnesses in written form, personal memories, and even in old newspapers. This October I am scheduled to make a Grand Rounds presentation at the Medical College of Virginia (now Virginia Commonwealth University Medical School), the medical school from which I graduated thirty-seven years ago. My topic will be “Polio, MCV, and Me.” I will attempt to describe my early experience with polio, the importance of MCV in my life, and a biopsychosocial overview of the disease of polio from my own analysis and the witness of others who will help me with this presentation.
The race is not over. Slow down and share your story. If necessary, get someone else to help you share your story. People will listen or will read. Stories from polio survivors are not fiction. They are real. The Diary of Anne Frank has done more to preserve the memory of the Holocaust than perhaps any other single publication. This was a simple but brilliant diary by a teenage girl who told her story as it happened. Time is growing short. Tell your story of human suffering, of your splendor in the grass, and your faith that looked past death. William Wordsworth wrote it much better than me.
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Don’t forget the change of meeting date to Saturday, January 17th – hope to see you all there. Dr. Zilioli is coming in from St. Petersburg to talk with us. Many of you know him and know that he will answer all questions you have pertaining to Post-Polio Syndrome.
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The following poem is also the work of Dr. Henry Holland – a multi-talented man.
Then sing, ye Birds, sing, sing a joyous song!
And let the young Lambs bound
As to the tabor's sound!
We in thought will join your throng,
Ye that pipe and ye that play,
Ye that through your hearts to-day
Feel the gladness of the May!
What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be;
In the soothing thoughts that spring
Out of human suffering;
In the faith that looks through death,
In years that bring the philosophic mind.
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Reprinted with the permission of the author, Dr. Henry Hudson, of the Central Virginia Post-Polio Support Group.
This article is in their October-November 2003 “Polio Deja View” newsletter.
A Few Words on Behalf of
Western Traditional Medicine
Post-Polio Syndrome (PPS) is a chronic, often progressively debilitating neuromuscular condition that most survivors of paralytic and bulbar polio are experiencing in their later adult years. No precise etiology for PPS has been found; although many theories seem plausible. Many treatment recommendations have been made over the years. These treatments involve conventional medical model approaches and numerous alternative treatments. I have personally heard lectures, seen demonstrations and witnessed some of the alternative treatments. Examples would be magnets, chiropractor, therapeutic massage, acupuncture, holistic supple-ments and vitamin therapy, yoga, healing touch, chelation, and spiritual approaches. This article is not intended to be critical of any of these approaches except to say that most of them are not verifiable by the scientific method. Modern western traditional medicine is based on the scientific method. Any respected medical or surgical journal will reveal the scientific method in its articles.
The New England Journal of Medicine is of one the most highly respected medical journals in the world. It is published weekly and began in 1812. All original research and clinical research articles in this journal follow the scientific method with a written background on reasons for the particular research or study, methods utilized in the study, which often include double blind studies, the results of the study, and finally the conclusions reached as a result of the study. Jonas Salk and Albert Sabin used this very approach in their research on the development of an effective polio vaccine. A massive double blind study was done with the Salk vaccine on school children in the United States from mid 1954 to April 1955. What did “double blind” mean in this study? It meant that some of the children got the real Salk vaccine and some got a placebo, but the folks who gave and the children who received the vaccine did not know which was which. After the time of the study was over, it was found that the children who really received the Salk vaccine had a much greater protection against polio than those who received placebo. Only those who set up the study were aware of who got what. Thus, the givers of the vaccine or placebo and the children receiving the same were both “blind” as to the real contents of each syringe. This method greatly added to the objectivity of the study and made it more likely that other researchers could repeat it and get the same results. Albert Sabin did the same thing except he used Russian children to conduct his clinical studies. The scientific method is the backbone or the basis of western traditional medicine. This method is used in every accredited medical/research/teaching center in the United States as well as used by the pharmaceutical industry. The Federal Food and Drug Administration attempts to keep us safe by the same approach.
How has this approach benefited the world? Disease prevention is a major example. The scientific method has provided the world population with numerous effective vaccines. Many of you are aware of this if you have traveled to Africa, Asia, and other continents. Our children are protected from many childhood contagious diseases because of vaccines. The scientific method has brought about many effective pharmaceutical treat-ments and curative surgical procedures. The skills and instruments to aid in making a correct diagnosis have progressed immensely in terms of technology. Magnetic resonance imaging is a wonderful tool for the early diagnosis of some potentially terrible disorders.
Technological advances are happening almost every day. No physician is 100% correct in making a diagnosis and recommending a treatment, but the rational scientific approach has helped us more than any other approach. I challenge the reader to name any known disease entity that has been uncovered, diagnosed, and successfully treated as a result of any other method than the scientific method.
Western physicians are trained by this method to this day. Every college student who would like to go to medical school must do well in the premedical required courses, do well on the standardized Medical College Admission Test (MedCAT), and get accepted to at least one accredited medical school. Then this same student must be highly motivated, energetic and intelligent enough to learn an immense amount of subject matter in the first two years of medical school. During the last two years this student must learn an equally difficult amount of clinical material by means of lectures by practitioners, making hospital rounds, and serving on clinical rotations in the hospital or community facilities. Then after all of this the testing never seems to end. There is the state board of medicine exam, the national board of medicine exam, the specialty board exam and endless continuing education requirements in order to maintain one’s license.
I for one believe that the traditional western approach to the study and practice of medicine in utilizing the process of research, diagnosis, treatment and prevention of disease has and will continue to be the leader in the progress toward a healthy life for more and more people throughout the world. Admittedly there is much to fix in the delivery of health care to everyone, but the scientific methods of the past continue to be effective.
FECPPSG Editor’s Note:- Just a very quick “THANK YOU” to Dr. Holland for allowing us to reprint both of his articles.
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In the coming year,
"I wish for you..."
Comfort on difficult days,
Smiles when sadness intrudes,
Rainbows to follow the clouds,
Laughter to kiss your lips,
Sunsets to warm your heart,
Gentle hugs when spirits sag,
Friendships to brighten your being,
Beauty for your eyes to see,
Confidence for when you doubt,
Faith so that you can believe,
Courage to know yourself,
Patience to accept the truth,
And love to complete your life.
FECPPSG Editor’s Note:- Received this via e-mail – many thanks to all our e-mail friends for all the beautiful thoughts sent to us. Barbara
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The following article is reprinted from the San Francisco Bay Area Polio Survivor’s October 2003 newsletter. We’d like to thank their President, Phyllis Hartke, for e-mailing it to us thereby saving me several hours of typing. “THANKS, PHYLLIS!!”
[Federal Register: July 2, 2003 (Volume 68, No. 127)]
[Notices]
[Page 39611-39614]
>From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr02jy03-144]
EFFECTIVE DATE: July 2, 2003
To provide guidance on SSA policy concerning the development and evaluation of postpolio sequelae in disability claims filed under titles II and XVI of the Social Security Act (the Act).
Sections 216(i), 223(d), 223(f), 1614(a)(3) and 1614(a)(4) of the Social Security Act, as amended; Regulations No. 4, subpart P, sections 404.1502, 404.1505, 404.1508, 404.1509, 404.1511-404.1513, 404.1520, 404.1520a, 404.1521, 404.1523, 404.1525, 404.1526, 404.1528, 404.1529, 404.1530, 404.1545, 404.1546, 404.1560-404.1569a; and 404.1593-404.1594 and Regulations No. 16, subpart I, sections 416.902, 416.905, 416.906, 416.908, 416.909, 416.911, 416.913, 416.920, 416.920a, 416.921, 416.923, 416.924, 416.924a-416.924c, 416.925, 416.926, 416.926a, 416.928, 416.929, 416.930, 416.945, 416.946, 416.960-416.969a, 416.987, and 416.993-416.994a.
“Postpolio sequelae” refers to the documented residuals of acute polio-encephalomyelitis (polio)[1] infection as well as other disorders that have an etiological link to either the acute polio infection or to chronic deficits resulting from the acute infection. Disorders that may manifest late in the lives of polio survivors include postpolio syndrome (also known as the late effects of poliomyelitis), early advanced degenerative arthritis, sleep disorders, respiratory insufficiency, and a variety of mental disorders. Any one or a combination of these disorders, appropriately documented, will constitute the presence of “postpolio sequelae” for purposes of developing and evaluating claims for disability on the basis of postpolio sequelae under Social Security disability. Even though some polio survivors may have had previously undetected motor residuals following the acute polio infection, they may still report progressive muscle weakness later in life and manifest any of the disorders listed above.
The Act and our implementing regulations require that an individual establish disability based on the existence of a medically determinable impairment; i.e., one that can be shown by medical evidence, consisting of symptoms, signs, and laboratory findings. Disability may not be established on the basis of an individual's statement of symptoms alone.
This Ruling explains that postpolio sequelae, when accompanied by appropriate symptoms, signs, and laboratory findings, is a medically determinable impairment that can be the basis for a finding of “disability.” It also provides guidance for the evaluation of claims involving postpolio sequelae.
Postpolio sequelae constitute a medically determinable impairment when documented by appropriate medical signs, symptoms, and laboratory findings. Postpolio sequelae may be the basis for a finding of “disability,” as discussed below. When making a determination of disability in cases of postpolio sequelae, the adjudicator or decisionmaker must be sure that all of the individual's functional limitations have been considered. To do this, the adjudicator must make a comprehensive assessment of the cumulative and interactive effects of all of the individual's impairments and related symptoms, including the effects of postpolio sequelae.
Sections 216(i) and 1614(a)(3) of the Social Security Act (the Act) define “disability”[2] as the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment (or combination of impairments) which can be expected to result in death or which has lasted or can be expected to last a continuous period of not less than 12 months. Sections 223(d)(3) and 1614(a)(3)(D) of the Act, and 20 CFR 404.1508 and 416.908, require that an impairment result from anatomical, physiological, or psychological abnormalities that can be shown by medically acceptable clinical and laboratory diagnostic techniques. The Act and regulations further require that an impairment be established by medical evidence that consists of signs, symptoms, and laboratory findings, and not only by an individual's statement of symptoms.
For purposes of disability claims adjudication, postpolio sequelae refer to multiple physical and mental disorders that may be manifested by polio survivors many years following acute polio infection. Any one or a combination of these disorders appropriately documented by signs, symptoms, and laboratory findings will constitute the presence of postpolio sequelae. The term “postpolio sequelae” includes the documented residuals of acute infection as well as all other documented clinical conditions that have an etiological link to either the acute infection or to its residual deficits.
Motor weakness is the most common residual of acute polio infection and is usually manifested by observable weakness, muscle atrophy, and reduced peripheral reflexes. These obvious clinical findings are used to document the history of poliomyelitis.
Electromyographic studies may be used by clinicians in clarifying the cause and extent of neuromuscular impairment, but should not be needed for purposes of disability decision making. Nonetheless, when electromyography (EMG) results are available for review, these data should be considered in decision making. Typically, we will not order or purchase EMG studies.
In the absence of evidence to the contrary, and as long as the medical findings support a reasonable medical link between the prior polio infection and the present manifestation of any one or combination of the disorders discussed in the ruling, we will find that the individual has postpolio sequelae. For example, an individual with a history of polio affecting the left lower extremity who, on examination, has weakness and atrophy of the left thigh musculature with an observable limp now complains of chronic left lower extremity pain and is found to have lumbar stenosis documented by medically acceptable imaging. As discussed below, due to the chronic postural imbalance related to the effects of polio, a reasonable medical link exists between this individual's current medical condition (degenerative lumbar spine disease) and his/her prior polio residuals. Accordingly, we would make a finding of postpolio sequelae. On the other hand, an individual with a history of polio (for example, stating “I was in an iron lung”) who, on examination, has normal motor findings, including normal posture and gait, now complains of pain clinically consistent with chronic radiculopathy, and has medically acceptable imaging demonstrating degenerative arthritis in the lumbar spine. This individual's current medical condition does not demonstrate a reasonable medical connection with the prior polio; instead, the degenerative arthritis should be adjudicated as a musculoskeletal disorder unrelated to the prior polio infection.
Postpolio sequelae include such disorders as postpolio syndrome (also know as the late effects of poliomyelitis), early advanced degenerative arthritis, sleep disorders, respiratory insufficiency, and various mental disorders. These disorders and documentation issues concerning them are discussed in detail below.
According to the National Institute of Neurological Disorders and Stroke (NINDS), postpolio syndrome is a condition that affects polio survivors anywhere from 10 to 40 years after recovery from an initial paralytic attack of the poliomyelitis virus. The NINDS states that postpolio syndrome is characterized by a further weakening of muscles that were previously affected by the polio infection. The signs and symptoms include fatigue, slowly progressive muscle weakness, and, at times, muscular atrophy. The NINDS states that joint pain and increasing skeletal deformities such as scoliosis are common. Not all polio survivors experience these clinical problems, and the extent to which polio survivors are affected by postpolio syndrome varies. The onset of new or worsening signs and symptoms is associated with a further reduction of the individual's capacity to independently carry out activities of daily living.
Polio survivors often manifest motor residuals in a single extremity and thus function day-to-day with chronic postural imbalance. Clinicians have described degenerative musculoskeletal disorders etiologically linked to long-standing postural imbalance. Abnormal weight-bearing in polio survivors produces exaggerated wear and tear on the bones and joints of the spine or limbs that are overused to compensate for limbs weakened by polio. Early onset of advanced degenerative arthritis can be found in a compensatory extremity or spine. Where such an etiological relationship is clear, clinically documented early advanced degenerative arthritis in a compensating limb or spine is considered one of the postpolio sequelae.
Documentation of early advanced degenerative arthritis may include medically appropriate imaging or abnormal physical findings of advanced arthritis on clinical examination.
Chronic pain disorders related to early degenerative osteoarthritis should be evaluated based on the impact of the pain and its treatment on the individual's physical and mental functioning.
Some polio survivors report the occurrence of sleep disorders that are determined by clinical evaluation to be related to respiratory insufficiency during sleep. The poliovirus has demonstrated a propensity to attack the motor neurons responsible for respiratory function, and, during the acute infection, some individuals require ventilatory assistance. For example, years ago patients with acute polio infection were placed in an “iron lung” for ventilatory assistance. Some patients who required such assistance recovered and may have returned to normal lives without obvious signs of respiratory insufficiency. Some polio survivors, however, have reported the onset of sleep disorders years following the acute polio infection, and physicians have linked these sleep disorders to weakening of the respiratory musculature. During sleep, even slight weakness of the respiratory musculature may become clinically significant and interfere with breathing capacity. Chronic sleep deprivation resulting from repeated episodes of sleep apnea may result in the development of excessive daytime drowsiness or cognitive and behavioral changes.
Respiratory insufficiency should be documented by abnormal pulmonary function studies. The presence of a sleep disorder related to respiratory insufficiency requires documentation by longitudinal treatment records, including such things as abnormal polysomnography or other appropriate evidence. Note, however, that we[3] generally will not purchase a polysomnogram (also called a PSG, sleep study, or sleep test). See also 3.00H of the Respiratory System medical listings for additional information concerning sleep-related breathing disorders (see 20 CFR appendix 1 to subpart P of part 404—Listing of Impairments).
Some polio survivors report the onset of problems with attention, concentration, cognition, or behavior. Some researchers have suggested that certain cognitive and behavioral deficits are the result of the prior polio infection that involved the brain, although others do not agree with that concept. Other researchers have suggested that the traumatic psychological experiences associated with acute polio infection are revived when polio survivors recognize the onset of further weakness and functional loss.
Many polio survivors endured a life-threatening infection as young children. They may have spent extended periods away from their homes and families while hospitalized with paralysis or respiratory dysfunction, or while undergoing multiple orthopedic surgeries. Often they endured many months, or sometimes years, of hospitalization and rehabilitation. The psychological effect of perceiving the onset of further weakness, fatigue, respiratory dysfunction or joint pain, many years following the acute infection, can be significant. Signs and symptoms of anxiety and depression may produce further deterioration in function.
Any mental impairment that could have an etiological link to the acute polio infection or its chronic residuals may be considered a manifestation of postpolio sequelae. Deficits in attention, cognition, or behavior may be demonstrated by reduced concentration capacity, inability to persist in tasks, or memory problems. Also, behavioral abnormalities may be demonstrated by mood changes, social withdrawal, or other behaviors inappropriate for the individual. Mood disorders characterized by anxiety and depression may also be seen and clinically documented in these individuals.
Individuals experiencing postpolio sequelae may complain of the new onset of reduced physical and mental functional ability. Complaints of fatigue, weakness, intolerance to cold, joint and muscle pain, shortness of breath and sleep problems, mood changes, or decreased attention and concentration capacity may hallmark the onset of postpolio sequelae. Weakness, fatigue, or muscle and joint pain may cause increasing problems in activities such as lifting, bending, prolonged standing, walking, climbing stairs, using a wheelchair, transferring from a wheelchair (e.g., from wheelchair to toilet), sleeping, dressing, and any activity that requires repetition or endurance. Changes in attention, cognition, or behavior may be manifested by reduced capacity to concentrate on tasks, memory deficits, mood changes, social withdrawal, or inappropriate behavior.
Many polio survivors who had been in a stable condition may begin to require new or additional assistive devices, such as braces, canes, crutches, walkers, wheelchairs, or pulmonary support. The reduced ability to sustain customary activities, including work, may result. A previously stable functional capacity may be further diminished.
Many individuals with medically severe polio residuals have worked despite their limitations. The new onset of further physical or mental impairments (even though they may appear to be relatively minor) in polio survivors may result in further functional problems that can limit or prevent their ability to continue work activity. Postpolio sequelae may effectively alter the ability of these individuals to continue functioning at the same level they maintained for years following their initial polio infection.
We generally will rely on documentation provided by the individual's treating physicians and psychologists (including a report of the medical history, physical examination, and available laboratory findings) to establish the presence of postpolio sequelae as a medically determinable impairment. In the absence of evidence to the contrary, we will make a finding that a medically determinable impairment is established if any of the disorders discussed above have been documented by acceptable clinical signs, symptoms, and laboratory findings.
However, if evidence indicates that the diagnosis is questionable, we will contact the treating source for clarification, in accordance with 20 CFR 404.1512(e) and 416.912(e). Of course, if a favorable disability determination or decision can be made based on the available evidence of record, whether or not a link to the prior polio infection is evident, no further development need be undertaken.
The careful development of postpolio sequelae should include descriptions of the past acute illness (old records are not required), as well as a report of the current findings on physical examination. The examination report should also include the severity of any residual weakness, as well as the onset, pattern, and severity of any new physical or mental deficits. A description of current functional limitations and restrictions on physical and mental activity should be obtained from the examiner.
When possible, detailed longitudinal treatment records from the treating source should be obtained. In cases where severity of the impairment is unclear, an examination by a physician or psychologist who is knowledgeable about polio and postpolio sequelae is appropriate, if such a specialist is available.
Evidence from employers and other third party sources may be valuable in documenting a loss of a previous level of functioning and should be sought when there is a discrepancy or a question of credibility in the evidence of record and a fully favorable determination or decision cannot be made based on the available evidence. For detailed discussions regarding these factors, please refer to SSR 96-7p, “Titles II and XVI: Evaluation of Symptoms in Disability Claims: Assessing the Credibility of an Individual's Statements,” and SSR 96-8p, “Titles II and XVI: Assessing the Residual Functional Capacity (RFC) in Initial Claims.”
Once postpolio sequelae has been documented as a medically determinable impairment, the impact of any of the symptoms of postpolio sequelae, including fatigue, weakness, pain, intolerance to cold, etc., must be considered both in determining the severity of the impairment and in assessing the individual's RFC. The adjudicator must make a comprehensive assessment of the cumulative and interactive effects of all of the individual's impairments and related symptoms, including the effects of postpolio sequelae. Evaluate all symptoms and their effects in accordance with 20 CFR 404.1529 and 416.929, and SSR 96-7p, “Titles II and XVI: Evaluation of Symptoms in Disability Claims: Assessing the Credibility of an Individual's Statements.”
Most postpolio sequelae are stable or very slowly progressive disorders. The medical evidence should readily support an expected duration of at least 12 or more months.
The listing criteria under our current listing 11.11, Anterior poliomyelitis, may be applied both to cases of static polio (where there has been no reported worsening after initial recovery) and to cases presenting with postpolio sequelae. All documented postpolio sequelae must be considered either alone or in combination to determine whether the medical criteria of listing 11.11, or any other listing, have been met or equaled. If the impairment is not found to meet or equal a listed impairment, we consider the impact of the impairment and any related symptoms in determining an individual's RFC and we proceed to evaluate the individual's impairment under our sequential evaluation procedures in accordance with 20 CFR 404.1545 and 416.945. It is essential that the cumulative and interactive effects of all of the individual's impairments, including symptoms, be carefully assessed in determining the individual's RFC in these cases.
A disability onset date in cases involving postpolio sequelae is set based on the individual's allegations, his or her work history, and the medical and other evidence concerning impairment severity. Generally, the new problems associated with postpolio sequelae are gradual and non-traumatic, but acute injuries or events, such as herniated discs, or broken bones from falls, may be markers for establishing a disability onset date. For additional discussion concerning the determination of onset date, refer to SSR 83-20, “Titles II and XVI: Onset of Disability.”
This ruling is effective upon publication in the Federal Register.
SSR 83-20, “Titles II and XVI: Onset of Disability,” SSR 96-3p, “Titles II and XVI: Considering Allegations of Pain and Other Symptoms in Determining Whether a Medically Determinable Impairment is Severe,” SSR 96-4p, “Titles II and XVI: Symptoms, Medically Determinable Physical and Mental Impairments, and Exertional and Nonexertional Limitations,” SSR 96-7p, “Titles II and XVI: Evaluation of Symptoms in Disability Claims: Assessing the Credibility of an Individual's Statements,” SSR 96-8p, “Titles II and XVI: Assessing Residual Functional Capacity in Initial Claims,” and SSR 96-9p, “Titles II and XVI: Determining Capability to Do Other Work—Implications of a Residual Functional Capacity for Less Than a Full Range of Sedentary Work.”
[1] Polio is caused by one of three types of polioviruses affecting the brain and spinal cord. No matter which neurons are attacked by the virus, the severity of any residual deficit depends upon how many cells within a specific area are destroyed. Fortunately, the polio infection was eradicated in the United States during the late 1950s following the development of oral polio vaccine and successful mass immunization. Most polio survivors in this country are now in their forties or older, but polio continues to be a common infection in underdeveloped countries. The World Health Organization is sponsoring immunization programs in hopes of completely eradicating the disease. Most individuals who contract polio only have mild symptoms at the time of the initial infection and then fully recover. Only 2 percent of infected persons experience paralysis from polio. Deaths from acute polio infection usually occur within the first few days following the onset of paralysis. About one-third of those individuals who do develop paralysis are left with some degree of permanent weakness, commonly involving a single extremity. Postpolio muscle paralysis is of the lower motor neuron variety and is characterized by weakness, muscle atrophy, and reflex loss