IPPSO NEWS MAGAZINE
Vol 3 No. 1 January 2010 Editors: Mike and Yvonne Isaacson
It is ability that counts - not disability
From The Editors Desk
Familiarity, as the saying goes, breeds contempt.
The letters "PPS" within IPPSO identifies us as an organization dedicated to help those of us who already have PPS and also to help those "polios" who are new to PPS and don't understand exactly what it is that is happening to them.
If you fall into the first category - you already have PPS and have had it for years - you might think that you know all there is to know about the syndrome, but - beware!!
It is a pretty safe bet that there are things that you have forgotten about PPS because either researchers didn't know enough at the time or they didn't apply to you when you first read about PPS and how to live with it.
If you fall into the second category - you have just developed PPS and don't know what the h*ll has hit you - then there is some valuable information for you in this issue of our magazine. There is even more information on our web site, so browse through that as well. http://www.ippso-world.org/
Whatever PPS category you belong to, you can only benefit from acquainting and/or re-acquainting yourself with the syndrome and how to live with it. But remember..... what follows within this newsletter is not an exhaustive study of PPS. That would have to be undertaken by a suitably qualified medical practitioner and would be published as a book. In fact, browse the Amazon site for some very good books on PPS.
Actually, there is a third category that I haven't mentioned yet. That category is this..... You had polio fifty years ago, but you haven't yet developed PPS. Well, PPS doesn't visit everyone who had polio, so you are in the "extremely lucky" category and I fervently hope that you stay that way! Mike Isaacson
You do not need a parachute to skydive. You only need a parachute to skydive twice.
So, What is PPS all About?
Post-polio syndrome (PPS) is a condition that affects polio survivors years after they've recovered from their initial bout with the disease. An interval of 30 to 40 years usually elapses before the first PPS symptoms occur, but intervals as short as eight years and as long as 71 years have been documented. Modern rehabilitation may restore individuals with post-polio to their regular level of functioning; it may also require that they return to or begin using braces, crutches, canes, wheelchairs and a variety of adaptive equipment.
Weakness is the general symptom of post-polio syndrome. Muscle strength decreases when the nerve supply to the muscle is reduced. Symptoms can appear in the muscles that were affected at the time polio was contracted or in previously unaffected areas. Most new pain problems in polio survivors result from repetitive strain injuries to weakened muscle fibers and muscular tissues. Understand this.......
Aging of the previously damaged muscles and limbs and chronic strain of muscles whose strength was overestimated. (Post-polio survivors who consistently use remaining muscles at high intensity for many years are likely to develop Progressive Post-Polio Muscular Atrophy).
Medical problems unrelated to polio which may cause progression of post-polio weakness and lead to new symptoms.
Additional factors which contribute to late muscle deterioration include:
Living with Post Polio Syndrome
Since some medical professionals do not recognize the symptoms of PPS, it is very important that a general medical evaluation be done to exclude other conditions which may mimic post-polio syndrome. Further diagnosis and treatment by a specialist may then be necessary. Specialists dealing with post-polio syndrome include neurologists, pulmonogists, physiatrists and orthopedists. Managing Post-Polio Syndrome
Some people say "If you can't beat them, join them". I say "If you can't beat them, beat them", because they will be expecting you to join them, so you will have the element of surprise.
I doubt that there is anyone in the world of polio or any other physical disability who has never heard that name. Have you ever wondered why Gini Laurie is considered one of the grandmothers of the independent living movement? Who was she and why did she get involved with disability? She revealed a very personal reason, October 1988, at the dedication of the new St. John's Rehabilitation Hospital in St. Louis.
"My father was a surgeon and on staff at the old Euclid Avenue St. John's [Hospital]. In 1912, the year before I was born, four siblings were struck by polio: a 12-year-old sister was mildly disabled, a 6-year-old brother very severely disabled, and two sisters, aged 3 and 9, died within days at St. John's. In their memory, my mother painted a mural on the ceiling of the St. John's chapel depicting them as angels.
"Sixteen years later, I watched my significantly disabled brother die of pneumonia and under ventilation at St. John's. His funeral mass was in St. John's Chapel, underneath the mural of our sisters."
Because of her family experience, it was only natural for Gini Laurie to become a Red Cross volunteer at one of the 15 polio respiratory centers operating in the late 1950s. The centers, where individuals with severe polio in need of rocking beds and iron lungs were sent, provided superb medical and psychological rehabilitation but, until 1953, most of the permanent respirator users seemed doomed to remain in the hospital for the rest of their lives. In order to save money by avoiding lifelong hospitalization at the [then] high daily rate of $37, Rancho Los Amigos Respiratory Center for Poliomyelitis in Downey, California, pioneered a system of home care that cost only $10 per day and polio survivors were sent home with their iron lungs and chest cuirasses.
Meanwhile, Gini Laurie volunteered at the Toomey Pavilion Respiratory Center in Cleveland, Ohio, and kept up with her old polio pals who had gone home. Reflecting in her later years, Gini commented that it was "apparent they [polio survivors] had two vital needs, people and information. They wanted to keep [up] with each other and wanted to share information about their lives and equipment."
Gini and her husband, Joe, started to meet those needs by building a heated pool with a lift at their home, where they held annual reunions of the alumni of the respiratory center. In 1958, the same year, they started publishing Toomeyville Jr. Gazette, featuring news of how polio survivors managed at home.
By 1959, the vaccines had stopped polio, the public stopped giving to the March of Dimes, and the March of Dimes stopped paying for attendants and closed the respiratory centers. The sudden loss of attendant payments caused panic. There was no Social Security Disability, no Medicare, no Medicaid, no vocational rehabilitation for people with severe disabilities. There was only welfare or help from churches or family. Fortunately, polio survivors who had gone home from the centers had worked with attendants for a few years, and had worked out some systems of community support. However, they also needed the psychological support of other survivors.
That's where the Toomeyville Jr. Gazette (later to become the Rehabilitation Gazette) came in. Gini led a letter-writing campaign in 1959, alerting survivors in every state to write to their congressmen urging national attendant care legislation. The national campaign was unsuccessful, but it called Washington's attention to the problems of people with severe disabilities. However, the California campaign was successful due to the efforts of the respiratory polio survivors, and state legislation established attendant care (in her words) "that later cleared the path for the independent living movement – for attendant care is the linchpin of independence." The 1959 campaign for national attendant care demonstrated and solidified Gini's belief in networking – the power of connecting people with people and the power of information.
"Networking links people who share common needs or common goals. Networking is a support system. It is a method of self-organizing. It is the structure of a social movement. Most of all, it is a method by which people get things done."
The following excerpts from the GINI archives demonstrate her persistence, her acceptance of people as they were, and her constant connecting.
Gini featured Ed Roberts in the Spring 1965 Toomeyville Jr. Gazette, after receiving a clipping from Parade Magazine (April 5, 1964) with an article entitled "This Student Majors in Courage." The accompanying photo caption read, "Helped by brother Ron, polio victim Ed Roberts goes to classes."
Later Gini received this postcard from Ed Roberts:
"Editor. I am sorry you did not come to me to update the article. This article taken from Parade Magazine was not only inaccurate in many instances but also poorly written. I am sorry to say that you have compounded the errors ..."
Gini responded August 3, 1965:
"Dear Ed, Mea culpa, mea culpa, mea maxima culpa..." and explained why she had not consulted him. "I shall be most grateful if you will tell the story of your teaching career, living at and attending university. It is vitally important, not only to the young would-be college students but to the vocational rehab departments who will be financing their studies . Meanwhile, could you help with some information as to your present living arrangements at the Cowell Hospital? A very brilliant young respo in Germany is fighting to find a university in the U.S. which he can attend."
Gini sent Ed another note dated August 12, 1965:
"Dear Ed . My friend, Adolph of Germany, has sent the enclosed letter to me to forward to you. Do hope you are the magic button for him. I am so interested in helping him attain his pinnacles. Cheerio, Gini."
On September 9, 1970, Ed Roberts, in a postcard, made the following announcement:
"I have begun [a] consultation business for anyone needing help with problems of cripples. Thus far I have consulted with Health, Education and Welfare in Washington, DC, about programs for cripples in higher education. Helped secure $80,000 grant for University of California at Berkeley program run by cripples for the education of cripples. I brought John Hessler in as director. He is doing a magnificent job. Would you like to hear more? I believe no other consulting firm like this in country!"
He shared his philosophy with her in a 1970 letter:
"I am tired of well-meaning non-cripples, with their stereotypes of what I can and cannot do, directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the start of something big . CRIPPLE POWER."
Another clipping from the archives dated January 31, 1971 documents a shift in thinking:
"Judy Heumann grew up being called crippled, but today calls herself 'disabled and discriminated-against.' She feels that the word 'crippled' suggests that a person is not physically whole. 'If militancy means asking for something that is yours, then we're militant,' said Judy, president of the group. 'We're just tired of remaining silent just because we're scared of losing the little we have.' "
In 1988, Gini Laurie, at the Center for Independent Living in Springfield Illinois, reviewed the independent living movement:
"Independent living did not just happen. Two quads in Berkeley in the early 1970s did not wave their mouth sticks and say, 'Let there be IL centers.'
"The independent living movement was not isolated. It was very much a part of its time and a reflection of its time." She further mentioned some of the influences on its evolution. "The movement was influenced by the awakening of the importance of the individual; of the worldwide awakening to the rights of individuals and minorities. The independent living movement paralleled and was patterned after the black and women movements. "It was influenced by the fact that there were many more healthy and long-lived disabled and elderly because of medical advances, such as penicillin. There were many more healthy, long-lived, and severely disabled veterans who survived Korean and Vietnam [wars] due to better evacuation and treatment learned during WWII. The movement was also influenced and preceded by other organizations: Canadian Paraplegic Association, Paralyzed Veterans Association, The National Paralysis Foundation, [and] American Coalition of Citizens with Disabilities (ACCD)."
"The ACCD was very important . because, for the first time, people who were blind, deaf, and physically disabled worked together for their mutual benefit. It brought together people with disabilities from east, west, midwest, and south. I was a token non-disabled member of the coalition."
Gini continued to publish the Rehabilitation Gazette until her death in 1989. She had added Polio Network News (now Post-Polio Health) for polio survivors who were experiencing what has come to be known as the late effects of polio, and IVUN News (now Ventilator-Assisted Living) for ventilator users. She spent fifty years of her life supplying people with disabilities with information and knowledge and connecting people with people.
Gini many times ended her presentations with caveats.
"I prefer to think of the movement as an interdependent living movement rather than an independent living movement."
"The [phone] calls usually start by asking for the name of a nursing home that will take people on ventilators. I react violently to the suggestion and remind them that they do not need nursing. They need a pair of hands that they can direct. They do not need to be buried alive in a nursing home. They need to continue to live their lives as they choose."
"Beware of bringing the hospital home; beware of making the cost of using a ventilator astronomical. Society will choose the more economical alternative – no ventilator."
"Beware of the edifice complex; people don't need buildings; they need improved systems."
"Beware of UBI, universal bureaucratic idiocy – be careful you don't become what you were originally created to fight against."
"Reach out to the aging population. ILCs should practice what they preach; hire [people over 70] as peer counselors; put older people on [their] boards."
"Respect each other; the elderly may feel the same about the young's lack of understanding that disabled feel about non-disableds' lack of understanding."
"We can't let divisiveness happen. We must all work together . visual impairments, hearing impairments, physically disabled, mentally retarded, mentally ill, the elderly."
"We're a power if we work, think, and play together . and only if we do."
Politicians and diapers have one thing in common. They should both be changed regularly, and for the same reason.
Post Polio Syndrome Prognosis
A post-polio prognosis is a medical opinion as to the likely course and outcome of post-polio syndrome. When doctors discuss a person's prognosis, they carefully consider all of the factors that could affect that person's disease and treatment, and then try to predict what might happen. However, it is important to keep in mind that a prognosis is only a prediction and that the doctor cannot be absolutely certain about the outcome for a particular patient.
People facing post polio syndrome are naturally concerned about what the future holds for them. Understanding post polio syndrome and what to expect can help patients and their loved ones plan post polio syndrome treatment, think about lifestyle changes, and make decisions about quality of life. Many people with post-polo syndrome want to know their prognosis, so they may ask their doctor or search for post-polio syndrome statistics on their own.
I asked God for a bike, but I know God doesn't work that way. So I stole a bike and asked for forgiveness.
Definition of Muscular Atrophy in Post-Polio (PPMA)
This is defined as late muscle wasting that occurs as part of the post polio syndrome (PPS), a constellation of symptoms and signs that appear belatedly, from 20 to 40 years, after the initial polio infection and at least 10 years after what was once thought to be the "recovery" from polio.
PPS is no small problem. It is estimated that 1.63 million Americans were struck by polio in the epidemics of the 1940's, 50's, and early 60's and that 440,000 of the survivors have suffered and continue to suffer the effects of PPS.
The typical features of PPS include unaccustomed weakness, muscle fatigue (and sometimes "central" fatigue), pain, breathing and/or swallowing difficulties, sleep disorders, muscle twitching (fasciculations) and gastrointestinal problems. The muscle problems in PPS can occur in previously-affected muscles or in muscles that were previously thought not to be muscles that were not affected at onset of the polio.
The onset of PPS is usually gradual, over a period of years, but sometimes abrupt, with major loss of function suffered over several months or a couple of years. This process seems often to start after a physical or emotional trauma, an illness or accident.
The complications of PPS often include neuropathies, nerve entrapments, arthritis, scoliosis, osteoporosis additional atrophy (wasting) of muscles -- known as post-polio muscular atrophy (PPMA). The diagnosis of PPS is made by history, by clinical findings, and by ruling out other diseases that may mimic PPS. There are no specific tests to provide unquestionable confirmation of the diagnosis of PPS. The general rule is that those who were most seriously affected by the virus at initial onset and made the best recovery come to suffer the worst PPS symptoms years later.
No clear-cut cause for PPS has been found. There is known to be a failure at the neuromuscular junction (the place where nerves meet muscles). One idea put forth to explain PPS is that nerves and muscles that have had to overwork prematurely fail, but this is unproven. There is also known to be impairment in the production of certain hormones and neurotransmitters, but whether these changes are the cause of PPS or the effect of it is unknown.
Polio survivors -- such as Franklin D. Roosevelt, Itzhak Perlman, Joni Mitchell, and Alan Alda -- tend to be hard-driving, type-A personalities (as compared to nondisabled control subjects). And the more driven polio survivors tend to have more PPS symptoms.
The treatment of PPS including PPMA that is recommended by some authorities is therefore to slow down and try to conserve strength and energy. (This may not be entirely practical advice if the patient is the President of the United States or one of the world's greatest concert violinists).
It's not the fall that kills you; it's the sudden stop at the end.
Rehabilitation Program for PPS
The basic management principles for individuals with post polio syndrome include energy conservation and pacing one's activities. Although basic, these activity modifications may be difficult for some patients to accept.
Reports on exercises are conflicting, but the key factor seems to be exercise intensity. Strengthening exercises must be nonfatiguing. A specific suggestion is to exercise every other day, and the perceived rate of exertion should be less than "very hard." Loads should be held for only 4-5 seconds, and there should be a 10-second rest between bouts and a 5-minute rest between sets. The patient should perform about 3 sets of 5-10 repetitions.
In addition to specifying exercises for those body areas experiencing the deleterious effects of disuse, the exercise prescription also should consider how to protect muscles and joints that are experiencing the adverse effects of overuse and body areas with very significant chronic weakness (generally, areas where the muscles have less than antigravity strength on manual muscle testing).
Results of these exercises vary. Strengthening programs performed as described show a 60% increase on isokinetic strength, improved cardiorespiratory status, no decline in strength in 6-12 months, and 5% increase in isometric strength.
Electrical stimulation has been used to strengthen weakened muscles or to reeducate muscles weakened through disuse, as well as to decrease pain.
For myofascial pain, consider heat, electrical stimulation, trigger point injections, stretching exercises, biofeedback, muscle relaxation exercises, or static magnetic fields for trigger points.
For gait disturbances, assistive devices can be used, but sometimes patients refuse because of the philosophy of "not giving in." Treatment also can involve limitation of ambulation to shorter distances and the use of orthotics for joint protection.
Speech evaluation in persons with post polio syndrome usually is recommended with any suggestion of swallowing problems. The therapist teaches the patient about different techniques to improve his/her swallowing function.
It is vital that you discuss medications with your Doctor before taking any medication. Remember the old saying that 'One man's meat is another man's poison'. Medications, most of which address fatigue, have been used with only partial success in patients with post polio syndrome. Contradictory information is reported on the use of antivirals. Some people have found no significant improvement with antivirals as compared with placebo. Amantadine may act to release dopamine from dopaminergic terminals and other central sites. Corticosteroids have been studied, but with no good results.
Some authors have reported that one of the mechanisms for production of fatigue may be related to neuromuscular junction transmission deficits; however, treatment with anticholinesterases has been successful in only half of the cases; this low success rate has been attributed to the variety of neuromuscular junction defects believed to be present in post polio syndrome. The mechanism of response to anticholinesterases also is unclear because some patients experience improvement in muscular strength, rather than improvement in fatigability.
Breathing issues and PPS
For the latest Salk Conference on Breathing issues and PPS you will learn much if you click on http://poliotoday.org/ it is a wonderful site! Thank you Gladys Swensrud for your hard work in getting this done!
If 4 out of 5 people SUFFER from diarrhea... does that mean that one out of 5 people actually enjoys it?
Mis-diagnosis of PPS
There are still an uncomfortable number of medical men who, through lack of lack of knowledge and understanding of the Late Effects of Polio, tend to mis-diagnose the syndrome. Amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease) is often diagnosed in error. The Doctor who makes this diagnosis is not a charlatan, he is not sufficiently educated. See the IPPSO web site http://www.ippso-world.org/ for a list of PPS Doctors, and whilst you are there, read more and much more about PPS.
Did you know that dolphins are so smart that within a few weeks of captivity, they can train people to stand on the very edge of the pool and throw them fish?
I have told this story many times before and I will probably tell it yet again because it exemplifies our strength and determination which we can achieve only when we all pull together and work together as one. That is when we achieve that which really is worth achieving. - Ed.
It was a motley collection of unfortunates that assembled on the starting line. One of them was so weighed down by his leg braces and held his crutches so awkwardly that it seemed as if he wouldn't be able to move at all when the starting gun was fired and the race was under way. Another limped badly on a withered leg very much shorter than the other, lurching unsteadily as he wrestled with his cane, trying to steady himself. A third competitor who could walk, but only with obvious difficulty, waited patiently for the race to begin. Another, with a very twisted body also waited for the race to begin. Yet another had legs as thin as twigs and moved only in uncontrollable jerking movements. Never before had so many miss-sharpen individuals appeared on a starting line and the spectators sat and stared in disbelief, tears in their eyes. How on earth could any of these crooked people possibly take part in this kind of event?
The official raised his starting gun and fired, signifying that the "race" had begun. Slowly and painfully they all began moving along the course. Every step they took was painful and they screwed up their faces in a mighty effort to keep going. After three minutes, they had moved scarcely five yards along the course. The fellow with the thin legs like twigs was leading by a yard when there was a sudden loud cry and they all turned back to see what had happened. The kid with the leg braces had fallen and his crutches had spun across the track and out of his reach. He was lying on the ground, utterly helpless. Some of the spectators moved involuntarily to help, but before anyone could get to him, and without any hesitation at all, every competitor turned back to help him to his feet and pick up his crutches for him. Then they all linked arms and forming a long line right across the width of the race track, they made for the finish. They took strength from each other, keeping their balance much more easily now. Their faces beaming, wreathed in smiles and obviously enjoying themselves, they broke the tape simultaneously in a collective dead heat for first place.
The cheering lasted for twenty minutes.