N E W S L E T T E R
Editor's Corner
Welcome to the first edition of the Newsletter for 1997. I hope all our readers, especially those who first heard of the Network from the recent screening of Polio Days on Timeframe, enjoy its varied content. Next issue we will be focusing on Support Groups.
First, a quick word about our next Seminar. The date of this has been changed from 7 June to 14 June because 7 June falls on the long weekend. The Seminar, to be held at the Northcott Society in Parramatta, will feature "myofascial tension release". Our presenter will be physiotherapist Elspeth Ferguson, a graduate of Sydney University who has undertaken the required courses in the United States to enable her to practice this treatment. Dr Stanley Yarnell highlighted the benefits of such physiotherapy in his presentations at our recent Conference. Full details about the Seminar will be given in the next issue of the Newsletter which is due to be posted in the first week of June.
The outstanding papers from our November 1996 International Conference Living with the Late Effects of Polio are now held and the complete Proceedings is almost ready. If you were unable to attend the Conference, you don't need to miss out on the valuable information imparted by polio survivors and health professionals alike. The final Proceedings will contain more than 130 pages packed with facts, advice, tips, personal stories and much more. An Order Form will go out with the April Information Bulletin.
If anyone took photographs when they attended the Conference, we would appreciate the opportunity to add them to our Conference Photograph Album. People from other places record such events from different perspectives, and if you are willing to donate one or more photographs to our Album it would provide a more complete picture of all that went on. If you are able to help, please write to the Secretary at the above address.
Anne Buck is researching the history of the Women's Auxiliaries of the NSW Society for Crippled Children (now the Northcott Society) for her BA (Hons) thesis. She would like to interview for her research anyone who was visited by members of the Women's Auxiliaries during the 1930s and 1940s. Please contact Anne on (02) 9636 6515.
The Physical Disability Council of NSW (PDC) will soon be holding consultations to listen to the concerns of people with physical disabilities in rural areas. The consultations are scheduled to be held in Wagga Wagga (2 and 3 May), Dubbo (9 and 10 May), and Coffs Harbour (16 and 17 May). If you wish to participate please contact Phil Saunders, PDC Executive Officer, on (02) 9380 6039. Further details (including venues and times) will be given in our April Information Bulletin.
Finally, we need a new Treasurer from 1 July 1997. Due to increasing work and family commitments, Marianne Newton has advised that she will be unable to put the necessary time into this position after the end of this financial year. She will, however, remain on the Committee in an advisory capacity until the Annual General Meeting in November. We cannot leave this vital position unfilled. If you are able to get out to the bank and to Committee meetings and are willing to give it a go, please telephone or write to Nola soon.
Reflections on the Orthotics Seminar : 1 March 1997
The recent Seminar about Orthotics attracted more than sixty members and friends. It was great to see such an enthusiastic roll-up at our first get-together since the Conference. Many members had travelled great distances from well outside the Sydney metropolitan area to attend. Unfortunately, gremlins totally outside our control were at work, and as a result our guest speaker, Dr Robert Adler, did not arrive until around 3:00 pm. We sincerely apologise to all members for any inconvenience caused, and particularly to those who had to leave before the Seminar talk got underway. Those who remained were treated to a most informative talk. Barbara McCormack very kindly offered to write a report on the Seminar for the Newsletter and forwarded the following very promptly.
Using a whiteboard with which to illustrate, Dr Adler began his lecture by giving a diagrammatic overview of the muscles, ligaments and joints involved in the process of walking. He explained how subtle changes and compensatory factors in walking come into play over time with polio survivors not necessarily becoming aware of them.
The main theme throughout his talk was "Prevention is better than cure"! Dr Adler could best be described as a very "down to earth" person who called a spade a spade. His references to what couldn't be done for people whose walking muscles have deteriorated too far (thus creating deformities unable to be corrected by orthotics) was very daunting to some present. His suggestion was to "stay with what you have at present" - be it older-style calipers, a wheelchair etc - if your walking capability is significantly reduced and deformity has occurred. However, we should not make any decisions about whether orthotics can help us or not without consulting our health care (rehabilitation) professionals.
Many polios have what they commonly refer to as a "good" leg and a "bad" leg. Following their initial onset of polio and throughout their life, the so-called "good leg" is left to compensate and carry the weight that the other leg is unable to. It may be with others that their lower limbs were seemingly not affected when they contracted polio, but now new weakness in their legs, and fatigue when walking, is a real problem. It is crucial at this time that the correct orthoses are prescribed, fitted and worn to prevent possible irreversible deformities occurring. The orthosis most often prescribed by Dr Adler is the plastic AFO which is an ankle-hinged ankle-foot orthosis (sometimes called an in-shoe caliper). If made and fitted correctly, the AFO should fit like a glove and be able to be worn by the person from day one without any discomfort.
For a while there it seemed like the old Victoria vs NSW situation (Dr Adler comes from Victoria) with Victoria being the state where all good ankle-hinged AFOs are made. That was until a representative of the Northcott Society, June Lehmann, told everyone that they made them there. We later learnt from members of the group that the Royal North Shore Hospital and the Royal Prince Alfred Hospital also manufacture them.
There was a lot of interaction and discussion during question time, with many present showing their calipers and how they worked to each other and to Dr Adler for comment.
It was a very enlightening and informative afternoon and a must for anyone contemplating a new caliper. At the conclusion of the Seminar, President Nola Buck thanked Dr Adler on behalf of everyone present for giving up his afternoon to address the group.
Director, Post-Polio Rehabilitation and Research Service, Kessler Institute for Rehabilitation - Saddle Brook; Associate Professor, Clinical Physical Medicine and Rehabilitation, New Jersey Medical School/UMDNJ; Chairperson, International Post-Polio Task Force. (The following comprehensive article was obtained from the Internet.)
Unfortunately, surgeons are often the most unaware of issues that don't relate to their specialty. If you have to "go under the knife", the innocent ignorance of your surgeon (or his thoughtless disregard for your non-surgical problems) can lead to unnecessary emotional discomfort, excessive physical pain and occasionally serious complications.
However, it is important that polio survivors not add PPS to their list of worries surrounding surgery. Not one of our hundreds of patients has died or been seriously damaged even if none of the issues discussed in the following article was addressed. And, only a few of our hundreds of post-polio patients have permanently lost function after surgery.
So, read the article and give a copy to each member of the surgical team and the nurses on the hospital floor where you will be staying. Discuss the article in detail with your surgeon and ask that a copy be placed in your medical chart before you go under the knife. Hopefully, all members of your surgical team - the surgeon, anesthesiologist, recovery room and floor nurses - will listen to you and become educated about the special problems surrounding surgery for polio survivors - and your individual medical issues in particular - long before the order, "scalpel" is given in the O.R.
PPS Monograph Series. Volume 6(2). Hackensack: Harvest Press, 1996
PRE-OPERATIVE PREPARATION
RULE OF 2 for ANESTHETIC
Polio survivors need the typical dose of anesthetic divided by 2
Regardless of whether a local, spinal or general anesthetic is used, the following applies:
RULE OF 2 for POST-ANESTHETIC
Polio survivors require 2 times as long to recover from the effects of any anesthetics
Also, polio survivors can be sensitive to atropine-like drugs used to dry secretions during surgery. [6] Atropine-like drugs also slow the gut, and polio survivors may be excessively constipated after surgery or, rarely, actually have their intestines stop moving (paralytic ileus) for a period of time. These problems can be treated symptomatically as they would in someone who did not have polio.
If the dose of anesthetic is carefully regulated, a polio survivor's first post-op experience will be waking in the recovery room. Often, polio survivors awaken from anesthetic shivering violently. Research has shown that polio survivors are extremely sensitive to cold because they have difficulty regulating their body temperature.
Polio survivors' automatic (autonomic) nervous systems were damage by the poliovirus from the brain (hypothalamus) through the brain stem (reticular formation and vagal nuclei) to the spinal cord (intermediolateral columns). [4-8]
Polio survivors cannot control the size of their blood vessels, since the nerves that make the smooth muscle around veins and capillaries contract were paralyzed by the poliovirus. Therefore, polio survivors' blood vessels open under anesthetic and dump the heat of their warm blood into the cold recovery room. Recovery room nurses need to know about this problem and help polio survivors stay warm. Additional blankets will help, and the surgeon can even write an order for a heated water blanket to be used in recovery.
RULE OF 2 for PAIN
Polio survivors need 2 times the dose of pain medication for 2 times as long
Not only will post-polio patients be unable to stand or walk, they may also be unable to even move to position themselves in bed. Polio survivors may also have low blood pressure after surgery that could itself cause lightheadedness, fainting and falls.
RULE OF 2 for RECOVERY
Polio survivors should stay in bed 2 times longer than other patients
RULE OF 2 for LENGTH OF STAY
Polio survivors need to stay in the hospital 2 times longer than other patients
Nursing Care and Nurse Caring
Many post-polio patients have had multiple experiences of psychological, physical and even sexual abuse at the hands of hospital staff. Questions or complaints about painful and frightening therapies were not infrequently met by staff anger or punishment. Patients report having been locked in dark closets overnight when they asked questions, spoke out or cried.
Necessary nursing care could be withheld for no apparent reason. Many post-polio children were slapped and some were actually beaten with rubber truncheons by physical therapists to "motivate" them to stand up and walk. [10]
Returning Home
RULE OF 2 for WORK
Polio survivors need 2 times the number of days of rest at home before they return to work or household duties
Polio survivors must be encouraged to rest and to return to activities slowly, especially if they are somewhat deconditioned and feel weaker or more fatigued post-op. Polio survivors should ask their surgeon for a note that allows them to stay home from work twice as long as the typical patient.
Strength or endurance lost after surgery are typically recovered. To aid recovery, gentle physical therapy may be advisable. Passive stretching, range of motion exercises and slowly increasing endurance are more valuable than muscle strengthening exercise which can actually cause muscle weakness.
Especially if a polio-affected part of the body has been operated on (stomach, back, arms or legs), a physiatrist who is thoroughly knowledgeable and experienced about the care of polio survivors and PPS should be consulted before surgery so that a post-op rehabilitation plan can be in place. A short stay in a rehabilitation hospital after surgery (especially after back or leg surgery) may make a polio survivor's recovery safer, faster and more complete.
RULE OF 2 for FEELING BETTER
Polio survivors need 2 times longer to feel "back to normal" again
REFERENCES
Lower dose of pre-op calming medication.
Lower dose of anesthetic.
Orders for post-op anti-vomiting medication.
Difficulty clearing secretions in the recovery room.
Longer-term sedation with anesthetic.
Difficulty clearing secretions on the nursing unit.
Orders for increased dose of pain medication.
Needing help in moving in bed and in the room.
Not standing or walking until you are fully awake and able.
Anti-embolism stockings.
Meet with PPS physiatrist before surgery and discuss:
Physical therapy for stretching and range of motion in hospital.
Possible admission to a rehab hospital before going home.
Physical therapy for walking and increasing endurance at home.
IN THE SHADOW OF POLIO: A PERSONAL AND SOCIAL HISTORY
by Kathryn Black
Book Review by Mary Westbrook
One positive outcome of the recognition of post-polio syndrome has been a new interest in, and reassessment of, the polio experience. Kathryn Black writes in her book, 'In the Shadow of Polio', that so thoroughly has polio been expunged from popular memory that in 1993 a historian could write an eight hundred page social history of the fifties without mentioning the disease, or even the discovery of the vaccines.
Recently a spate of books has appeared. These include Jane Smith's 'Patenting the Sun: Polio and the Salk Vaccine', Naomi Rogers' 'Dirt and Disease: Polio Before FDR', Dorothea Nudelman and David Willingham's 'Healing the Blues' (an account of Dorothea's counselling for the depression she experienced at the onset of post-polio syndrome), Tony Gould's 'A Summer Plague: Polio and its Survivors', and nearer to home Karen Butterworth's 'Mind Over Muscle: Surviving Polio in New Zealand' and Anne Killalea's 'The Great Scourge: The Tasmanian Infantile Paralysis Epidemic'. The contents of these books range from the strictly historical to the highly personal. Some authors combine the two, none more effectively than does Kathryn Black. She alternates chapters which describe her mother's attack of polio and its effects on her family with chapters which explore the social history of polio. The two strands illuminate each other and the reader is hardly aware of the change of perspectives. It is a hard-to-put-down book which tells a heartrending story and fascinates with the range of information it conveys.
Kathryn's Story
In her late thirties, facing a failing marriage and depression which resurfaces each spring around the time of her mother's death, the author decided to investigate her mother's attack of polio which had occurred when Kathryn was four. Her mother died twenty-two months later. Kathryn writes, 'I thought I had done something to send her away. I know I stood naked, vulnerable and afraid without her protection. I know because I was going to go on thinking that way for the next thirty years. The knowledge that the worst of disasters can strike the heart of my home is something I've carried like a heavy stone ever since'.
Kathryn's mother, Virginia, contracted severe bulbospinal polio in 1954. She was almost totally paralysed, underwent a tracheotomy and was placed in an iron lung. When she left hospital over a year later she had recovered little movement and required a rocking bed or a portable respirator when she sat in a wheelchair. Her two young children were never taken to visit her during her hospitalisation and were eventually sent across the country to stay with their grandparents. When Virginia was discharged from hospital she moved next door to the grandparents who, with the help of cousins and a nurse, provided most of her care. Her husband who had begun drinking heavily was rarely at home. When Virginia died he left the children with their grandparents and made little further contact.
Kathryn writes that, 'After Mother's death my grandparents, father, brother and I spun free of each other into separate orbits, unable to cope with our own grief, unable to help each other. We entered a realm of silence and lived there with the fact of Mother's death. We smelled it, feared it, walked around it daily, but never spoke of it. Mother - her life, her illness, her death - became the unnamed, the unknowable, as if she had never been. One of Maurine's (grandmother) friends told me that after Mother's death, if something was said about Virginia, my grandmother didn't respond .... Photographs and Mother's possessions .... vanished from my grandparents' home .... As I was growing up no one ever said to me, "Your mother would have loved that" or "You do that just like your mother" and certainly not "I miss her" or "I loved her" or "She loved you"....
With Mother's death we lost her, our father and in a way our grandparents too. They couldn't be grand to us, indulgent and playful .... they became our disciplinarians, saddled with children again'.
Kathryn feels that she must make sense of these events in her past to heal her sorrow. 'What I didn't know .... was dictating and diminishing my daily life'. She begins her search for information by interviewing relatives, health practitioners and patients from the hospitals where her mother was treated, and polio survivors contacted through newspaper advertisements.
Epidemic of Fear
The deep community fear of polio is vividly described in the book. Kathryn recounts that when Mia Farrow, aged nine, was hospitalised with polio her family repainted the entire house, reupholstered the furniture, cleaned the carpets, drained the swimming pool, reseeded the lawn and got rid of the dog.
I was interested to read of the high rate of misdiagnosis particularly among adults. One pregnant woman whose symptoms included stiff neck, pain, inability to pick up objects or to walk properly was prescribed a painkiller by her doctor and told to keep busy. 'He shooed her away and chided her for malingering'. Later that day she was hospitalised in a delirium from polio. When her husband developed the same symptoms the doctor told him not to worry. As they were the same symptoms as his wife's, they must be psychosomatic!
No scientist or doctor could say for sure how to protect yourself from polio. A Dr Schultz in Toronto sprayed the noses of five thousand children with zinc sulphate to block the entry of the polio virus through their olfactory nerves, 'the only result being that a few permanently lost their sense of smell.' Kathryn notes that parents were cautioned 'not to allow their children to become fatigued because it was thought then, and is known now to be so, that children who engaged in strenuous exercise were more apt to get the disease and to get more serious cases than those who kept quiet.' I recall having aching limbs in the days before I was diagnosed as having polio and not wanting to join in school sports. I was told not to be silly, I only had growing pains. Sabin speculated that older children and adults developed more severe cases of polio because they weren't allowed, or didn't permit themselves, to rest when they felt unwell with the early symptoms. Young children were more likely to rest so their cases tended to be milder.
Many survivors whom Kathryn interviewed recalled other members of their families being ill, with what were probably inapparent infections of polio, at about the time that they themselves were diagnosed. Kathryn's brother's teacher sent him home from school a few weeks before her mother contracted polio. He had a 103° temperature which 'turned into a "bad cold". A week later I had a temperature of 104° .... which the doctor attributed to an ear and throat infection'. Today Kathryn has a slight curve to her spine which she suspects is the result of mild polio. At the 1994 G.I.N.I. conference in St Louis one of the speakers, Marianne Weiss, who is a physiotherapist, said that she not infrequently encounters patients whom she considers had minimal, undetected polio in the past. She listed nine characteristics of these patients such as undeveloped muscles sometimes with blatant asymmetry of muscle development, abnormal spinal posture, inability at sport (sometimes after a period of excelling) etc. She said 'I worry that no other diagnosis fits these people, and that indeed they may be suffering the late effects of polio as surely as known survivors do'.
Treatments For Polio
Kathryn gives an interesting account of treatments advised for polio patients in the nineteenth century. These included bleeding, ice on the spine, rubbing on mercury ointment to produce blisters and jolting patients with electric currents. One expert in 1872 advised 'applying a red-hot iron over the affected area until an ulcer formed'. Early this century amputation of paralysed limbs was advocated. One American article of the time which I have read advocated amputation of limbs of children, particularly those of the lower classes because of their poor hygiene. A well known Australian actor has an arm affected by polio. When he was a child his mother refused to allow the doctor to amputate it.
Kathryn compares the various treatments such as Kenny's method which favoured movement as soon as possible, which was hastened by applying hot packs, and the doctors who believed rest was the important factor with casting being used to hold joints in neutral positions. She concludes that so little controlled research was conducted that it is impossible to say for sure what treatment was most effective.
The iron lung was developed by Philip Drinker of the Harvard School of Public Health. He got the idea from watching a colleague use a machine to measure an animal's breathing. It took him two years to design the first respirator which was first used in 1928. Word of the Drinker respirator as it was called quickly spread. A journalist dubbed it 'the iron lung'. The main manufacturer was L. H. Emerson so it was also called the Emerson tank. One survivor whom Kathryn interviewed was pregnant when she was in the iron lung and she called her baby son Emerson.
Life in the Polio Ward
A group of patients and health practitioners from the rehabilitation hospital where Kathryn's mother was sent, formed a group, the 'Polio Alums', which continues to hold reunions. Kathryn attended one of these meetings. She talked with people who knew her mother and was given copies of the mimeographed newsletter that the patients produced in the 1950s. The newsletter described the two typical polio hairstyles which resulted from always having one's head against a rest. One was a halo, the other a topknot. They were known as the 'polio poodle' and the 'rooster tail'.
The alums had stories of dimwitted staff. One nurse threw a blanket over his iron lung when the patient complained of being cold. Another patient requested a blanket because he was cold. The nurse touched his leg and refused, saying 'Oh it's all right, you're not cold!' The newsletter noted each patient's progress with a fanfare, 'Helen put on her socks; Jeanne could untie her shoes; Jerry painted with a brush held by a mouthpiece; Hank shaved himself; Loretta stood unassisted; Fred walked with crutches; John ate a bowl of jello by himself'.
The symbol of triumph over polio for patients, their families and for many health practitioners was to walk again. One physiotherapist told Kathryn of patients 'who tried against terrible odds to walk and failed' and of the extreme guilt they experienced. One friend of her mother's decided after rehabilitation that walking with irons 'took time and energy that she needed for her family life'. She decided to conduct her life from a wheelchair. It was well into rehabilitation before many patients acknowledged that their losses were permanent and the only realistic goal was to find compensations in other areas of their lives.
Virginia's Story
Kathryn learnt that her mother made little improvement compared to most of her ward mates. Her carers remember Virginia's feelings of despair. When she went home little closeness was established with her children who were warned not to touch her bed. She was never taken on a trip, or even outside the house, in her wheelchair. 'Why not?' Kathryn asked her father. 'It would have been such a cumbersome process,' he replied, and he didn't enjoy 'making a spectacle of himself.'
There was no clear reason for Virginia's death. Kathryn believes, as does one of Virginia's doctors, 'that she lost the will to live'. In her research 'I encountered many stories about polio patients ... who died early in their care without obvious medical complications. Those who related the stories used them as illustrations of people who had given up. There was for example the man who died just days after his wife asked for a divorce.'
How different it might have been. Kathryn visits Harriet who had three young children and contracted polio in the same year as Virginia. She remains similarly handicapped. Harriet showed the family album. Among the usual family snapshots is Harriet in an iron lung. The two years old twins stand on chairs to see and talk with their mother. 'Year after year the album reveals family life. Always Gerry and Harriet are there, she in a wheelchair, a scarf concealing her tracheotomy tube, both smiling with their children .... Polio even at its most rapacious was not powerful enough to do in the Stephens family.'
If only her family could have been like that, Kathryn wishes. Due to circumstances such as her husband's lack of support, 'My mother lost herself to polio and I think floundered in her effort to replace her old identity, her old story, with one she could imagine living.'
Aftermath
The findings from her research prove very healing for Kathryn. She cites Kafka's statement that a book should serve as 'the axe for the frozen sea inside us. Writing this book has been my axe.'
Briefly we are told that she remarried and was able to make the commitment of having children. Interestingly her husband's mother died from polio when he was four. 'For Jens and me the loss of our mothers is ... a significant link. When we first began to talk of our losses ... we discovered a shared, arcane language, one we had never spoken with anyone before.' The book is dedicated to their mothers; 'To Virginia and Mary Ellen, still loved, still missed.'
When it came to vaccinating their two sons Kathryn and her husband 'couldn't face the live (Sabin) vaccine. .... no matter how small the risk, one in a few million even, it was too high for us ... We had them twice inoculated with the inactivated polio virus (Salk) to help them build antibodies to the virus, and then followed up with the oral live vaccine (Sabin), for the longer immunity.'
Post-polio Syndrome
The author describes post-polio syndrome and makes several interesting observations. She tells how President Roosevelt, who had quickly recovered the use of his hands after his initial attack, experienced increasing weakness toward the end of his life. He could no longer hold a cup or light a cigarette.
Kathryn suggests that one positive outcome of post-polio syndrome is that it has given survivors an 'opportunity to come to terms with long repressed emotions .... Their new physical problems have sent them by the thousands into post-polio support groups, where they've not only discussed their new physical limitations but revisited their memories of being hospitalised for months or years, of being home watching from a window while the neighbourhood children played ball.'
Kathryn also speculates: 'I keep turning up reports of interesting scientific studies in progress in the 1950s .... that were discontinued after the vaccines were in use. No one can ever know what the completion of some of this research might have meant to today's polio survivors or to the treatment of post-polio syndrome.'
One of the polio survivors who answered Kathryn's advertisement asked 'Are you one of us?' meaning had she had polio. After you read this splendid book I'm sure you will agree with Kathryn's reply, 'Yes, I am. All of us who lost something to polio have had to learn something about acceptance and about responding to challenge.'
References
* Black, K. (1996) In the Shadow of Polio: A Personal and Social History. Massachusetts: Addison-Wesley Publishing Company.
ISBN number is 0-201-40739-6. My copy was purchased as a special order (takes three or four months) through the Co-op Bookshop, Cumberland Campus, University of Sydney, Phone Number 02 9351 9484. Its cost was $38.95 (Australian)
Butterworth, K. (1994) Mind Over Muscle: Surviving Polio in New Zealand. Palmerston North: Dunmore Press.
Gould, T. (1995) A Summer Plague: Polio and its Survivors. New Haven: Yale University Press.
Killalea, A. (1995) The Great Scourge: The Tasmanian Infantile Paralysis Epidemic 1937-1938. Sandy Bay: Tasmanian Historical Research Association.
Nudelman, D. & Willingham, D. (1994) Healing the Blues. California: The Boxwood Press.
Rogers, N. (1992) Dirt and Disease: Polio Before FDR. New Brunswick: Rutgers University Press.
Smith, J.S. (1990) Patenting the Sun: Polio and the Salk Vaccine. New York: Morrow.
Northern Rivers A short article was supplied for their local newsletter.
Editor: Gillian Thomas PO BOX 888, KENSINGTON 1465
Phone No: (02) 9636 6515
Barbara and John McCormack, Hunter Area Post-Polio Support Group
Editor: If you wish to consult Dr Adler, he may be contacted on (02) 9890 6979.
THE KNIFE IS NOT SO ROUGH IF . . .
Richard L. Bruno, PhD
When orthopedist Henry Kessler wrote The Knife is Not Enough, describing what would become the specialty of rehabilitation, polio was America's main event. Today, only a handful of specialists know how to treat polio survivors and Post-Polio Sequelae (PPS). Even more disturbing, few physicians have heard about, and even fewer know, what PPS are or understand polio survivors' special needs in a variety of medical settings.
PREVENTING COMPLICATIONS IN POLIO SURVIVORS UNDERGOING SURGERY
Unfortunately, only a handful of specialists treat Post-Polio Sequelae (PPS) - the unexpected and often disabling fatigue, muscle weakness, joint pain, cold intolerance, and swallowing, sleep and breathing problems - occurring in America's 1.63 million polio survivors 40 years after their acute polio. [1,2] However, all medical professionals need to be familiar with the neurological damage done by the original poliovirus infection that today causes unnecessary discomfort, excessive physical pain and occasionally serious complications after surgery. This is a brief overview to inform patients and professionals about the cause and prevention of complications in polio survivors undergoing surgery.
The pre-operative period is the most important, since it is when polio survivors must establish communication with the surgical team. After the second opinion and a polio survivor's decision to have surgery, the patient needs to ask the surgeon to read this article and the references cited. Then, surgical candidates must meet with the surgeon and anesthesiologist to discuss in detail patients' complete polio and general medical histories and the problems that will likely arise before and during surgery, in the recovery room and on the nursing floor. It is also recommended that the polio survivor meet with the Supervisor of Nursing on the floor where they will be transferred after surgery to discuss likely problems during the post-op and recovery period.
Lungs
We recommend that all polio survivors have pulmonary function studies as part of their pre-operative testing. [3] This is vital for those who had bulbar polio acutely, whether or not they used a respirator or an iron lung. But, polio survivors who have (or had) neck, arm or chest muscle weakness or have swallowing problems should also have their lung function tested so there will be no unpleasant surprises coming off the respirator at the end of the operation. Polio survivors with a lung capacity below 70% may need a respirator or respiratory therapy after surgery. [1]
Of course, polio survivors who use a respirator during the day or at night must discuss their respirator use and maintenance in detail with their surgeon, anesthesiologist, the nursing staff, and with their own pulmonologist, before admission to the hospital.
Physical Assistance
X-rays are a normal part of pre-op testing. Because of workers compensation concerns, many hospital staff are not eager to move or lift patients. Unfortunately, X-ray and examining tables are built at heights that are convenient for the professional, not the patient. Many polio survivors cannot step on a stool to get onto a high table, or even pull themselves over onto a table from a stretcher. Thus, polio survivors must ask for help in transferring.
Since most polio survivors have no experience asking for help under any circumstances, they need to find a phrase with which they are comfortable that will communicate whatever their needs are. Long explanations about having had polio or PPS or the specifics of which muscles are weak or paralysed are not necessary. For example, a simple "My legs (arms) are paralysed and I can't get onto that table; I will need help" should suffice. This phrase may have to be repeated before the polio survivor will be assisted.
If the professional replies, "Oh, I bet you can move by yourself if you try!" or "Don't expect me to lift you", an appropriate response is "I cannot get onto the table. Please ask someone else to help me or let me speak to your supervisor." A pleasant but steadfast refusal to do difficult or dangerous transfers is the polio survivor's best defence against injury before or after surgery.
General Anaesthetics
Polio survivors are exquisitely sensitive to anaesthetic. It has been known for 50 years that the poliovirus damaged the area of the brain stem - called the reticular activating system (RAS) - responsible for keeping the brain awake. [4,5] Because the RAS was damaged in those who had paralytic and non-paralytic polio, a little anaesthetic goes a long way and lasts a long time.
For example, the pre-operative medication used to "calm" surgical patients - often a combination of Valium and Demerol - may by itself put polio survivors to sleep for 8 hours. (Such excessive and prolonged sedation does occur when I.V. Valium is used alone in patients undergoing invasive but non-surgical procedures, like endoscopy.) Add to a pre-operative "calming cocktail" an intravenous anaesthetic (like sodium pentothol) or a gaseous anaesthetic, and polio survivors have been known to sleep for days. In addition, polio survivors with respiratory problems may have trouble clearing the gaseous anaesthetics. A number of our patients have awakened from anaesthetic on a respirator in I.C.U. to the frightened faces of their family, surgeon and anesthesiologist several days after surgery.
Here is the first of rule of thumb - we call Rules of 2 - for polio survivors having surgery:
This first Rule of 2 is certainly not intended to dictate the dose of anesthetic, but merely to remind anesthesiologists that polio survivors need much less anesthetic than do other patients. This does not mean that a given polio survivor might require less than 1/2 the typical anesthetic dose, or that another won't need more anesthetic. As always, the dose of anesthetic must be individually adjusted (for body weight, lipid space, etc) and be adequate to keep patients under during surgery but not cause them to sleep for a week.
Even applying the Anesthetic Rule of 2 polio survivors may be very sedated, if not asleep, for many hours after the surgery. This is one of the reasons why same-day surgery - even for complicated dental procedures - is not advisable for polio survivors. Sleeping or excessively sedated polio survivors cannot be expected to return home and take care of themselves after same-day surgery, since surgical complications may go unnoticed and sedation-impaired coordination makes falling likely. In spite of HMO pressure, NO POLIO SURVIVOR SHOULD HAVE SAME-DAY SURGERY FOR ANY REASON except for the most simple procedures that require only a local anesthetic.
Nerve Blocks
However, there are also problems with local anesthetics that numb only one area of the body. Spinal anesthetics, like epidural or saddle blocks used for childbirth and lower body procedures, often allow surgery without the patient being asleep and are therefore more desirable for polio survivors. However, the injection of a local anesthetic near the spine results in both pain-conducting nerves and motor neurons being anesthetized. Polio survivors are very sensitive to anything that further impairs their poliovirus-damaged motor neurons and a spinal anesthetic may cause polio survivors to be paralyzed for many hours. If a spinal anesthetic is used, polio survivors cannot be expected to get up and walk after surgery.
Curare-like drugs that are intended to paralyze muscles (e.g., succinylcholine) are typically used during major surgery to relax muscles that are going to be cut and make it easier for the ventilator to fill the lungs while patients are on the table. Again, any drug that interferes with muscle functioning will prevent polio survivors from walking or even moving for hours longer than it would for patients who didn't have polio.
Blood and Guts
There are yet additional concerns. Polio survivors with muscle atrophy, especially in the thigh muscles, will have a smaller blood volume than would be expected for their height or weight. Therefore, bleeding during surgery may be more of a problem. Polio survivors may want to bank their own blood slowly over the course of weeks, even for procedures where excessive blood loss is not typically expected. However, since polio survivors may be significantly more fatigued and prone to faint after giving blood, relatives' blood may need to be banked instead.
Positioning
One overlooked problem is the positioning of the post-polio patient on the operating. Muscle atrophy, scoliosis and spinal fusions may make certain positions problematic, especially those involving extension of the spine. Since the polio survivor is usually unconscious during positioning, there will be no report of pain that would normally warn of potential damage. A number of polio survivors have experienced severe back pain for months post-op, and even permanent traction injuries of nerves, after being placed for hours in damaging positions. It would be advisable for the patient to be awake during positioning on the table to prevent such post-op complications.
POST-OPERATIVE CARE
Cold
Vomiting
Another post-op problem related to brain stem damage is vomiting. As in anyone who receives a general anesthetic, polio survivors can develop nausea and vomit. However, polio survivors are more apt to faint (have vasovagal syncope and even brief asystoles) when they attempt to vomit. [6]
It is very important that post-operative emetic control be discussed with the anesthesiologist and administered before polio survivors go to the recovery room and that additional medication is written as needed in the post-op orders.
Choking
Yet another concern is difficulty swallowing as the patient is awakening. [9] Polio survivors who are aware of having swallowing problems, and sometimes in those without apparent swallowing difficulty, cannot clear secretions and may choke (or feel like they are choking) when they are lying on their backs, still half asleep, as the anesthetic is clearing.
Polio survivors' secretions need to be monitored in the recovery room and they should be positioned on their side if possible so that secretions can drain.
Pain
The single most troublesome problem after surgery is pain control. A number of studies have shown that many surgical patients are under medicated for pain. Under medication is a serious problem for the post-polio patient since two research studies have shown that polio survivors are twice as sensitive to pain as those who didn't have polio. [8]
Increased pain sensitivity is apparently related to poliovirus damage to endogenous opiate-secreting cells in the brain (paraventricular hypothalamus and periaquiductal gray) and spinal cord (Lamina II of the dorsal cord). [4,8]
Since polio survivors are known to be extremely stoic, they are not likely to abuse or become dependent upon narcotics.
RECOVERY
In keeping with the "get 'em up, move 'em out" trend in medicine, there will be the tendency to get polio survivors up and walking almost immediately after surgery. This is not advisable for a number of reasons. When polio survivors reach the nursing unit, they may still be twice as sedated from the anesthetic as are other patients. Since polio survivors need a very clear head to be able to control their weakened, polio-affected muscles to stand and walk, a fuzzy-headed polio survivor is at serious risk for falling.
Even if a polio survivor's head is clear, the anesthetic or other drugs may have temporarily weakened or even paralyzed the muscles needed to stand and walk. What's worse, the surgery may have cut muscles (especially abdominal muscles) that substitute for muscles paralyzed by polio (it is often muscle substitution that actually allows polio survivors to stand and walk, even though the muscles that are typically needed to walk were permanently paralyzed).
Under any circumstances, polio survivors should get up slowly, first sitting up in bed, then sitting with feet dangling, then getting into a bedside chair with assistance, then standing with assistance and finally walking with assistance and appropriate assistive devices.
With the necessity of additional bed rest, anti-embolism stockings to prevent blood clots may be a prudent precaution. Gentle physical therapy in bed may be advisable to maintain range of motion and for stretching, since polio survivors are prone to developing painful muscle spasms if they are not up and moving.
While polio survivors may become deconditioned with bed rest somewhat faster than others patients, because of autonomic nervous system damage, the dangers of getting them up and walking too quickly far outweigh those of moving too slowly. Polio survivors have learned to be very aware of what their bodies can and can't do. They are the best judges of when they can move, stand and walk safely.
Polio survivors often have difficulty merely being in the hospital. They may have insomnia, anxiety, and even have panic attacks. These symptoms are easy to understand when it is remembered that as young children, polio survivors were ripped away from their families and admitted to rehabilitation hospitals for months or even years. [2,10,11] Post-polio children underwent multiple surgeries and painful physical therapy, procedures administered often without explanation and certainly without their consent.
It is not surprising that polio survivors can be terrified of again becoming powerless patients at the mercy of hospital staff. Nursing staff's appreciation of the childhood trauma polio survivors experienced at the hands of medical professionals, and taking a moment to actually listen and respond to the real needs of the adult post-polio patient, will go far toward making the patient feel safer and more comfortable during their stay.
There is another Rule of 2 when surgical patients return home.
For all of the reasons described above, the entire recovery process takes longer for polio survivors. It is not uncommon for typically overachieving, hyperactive Type A polio survivors, who were taught as children to "use it or lose it", to return to work or household duties the day after they return home from the hospital. [10,11]
Post-Op PPS?
The 1985 National Survey of Polio Survivors has shown that emotional stress is the second most frequent cause of PPS (after physical overexertion). [11] Certainly, there are few emotional or physical stressors more potent then surgery. So, polio survivors should expect some increase in fatigue and muscle weakness resulting from the combination of the physical and emotional effects of the surgery, anesthesia, other medications, and bed rest. However, only a handful of post-polio patients permanently lose function after surgery.
Polio survivors need to remember:
CONCLUSION
All of the Rules of 2 are suggestions for polio survivors and the surgical team; they are not a substitute for specific information about the individual patient and communication among all members of the treatment team, including the patient. All polio survivors must be evaluated and managed according to their individual needs. Please take the time to read the following references so that you will be fully knowledgeable about and be able to help meet polio survivors' special needs.
Richard Bruno's article on surgery also included the detailed Polio Survivors' Pre-Op Checklist which appears on the following page.
POLIO SURVIVORS' PRE-OP CHECKLIST
Give articles to surgeon and discuss:
Pre-op lung tests.
Lower blood volume and blood banking?
Authorization for a longer stay in the hospital.
Orders for post-op anti-vomiting medication.
Positioning on the table during surgery.
Orders for staying warm in the recovery room.
Difficulty clearing secretions in the recovery room and on the nursing unit.
Orders for increased dose of pain medication.
Physical therapy for stretching and range of motion in hospital.
Placing articles about polio in the medical chart.
Give articles to anesthesiologist and discuss:
Lung problems?
Longer-term paralysis of muscles with spinal anesthetic and curare-like drugs.
Give articles to nursing supervisor and discuss:
Post-op rehabilitation plan.
Divisions of General Practice
Merle Thompson
Divisions of General Practice have been established to facilitate communication between GPs in a local area and to enable them to meet a number of other purposes such as education and professional training needs; communicating with other health professionals and consumers; undertaking health promotion programs and developing planned responses for those with special needs. There are 37 Divisions in NSW.
During 1995 the Network was approached by two Divisions, Hornsby Ku-ring-gai and Central Sydney, regarding the possibility of our members joining local consumer advisory committees.
In addition to contacting these Divisions, I wrote to all the remaining Divisions last August and encouraged them to invite our participation in their advisory committees. I also suggested that we could have members who would be prepared to assist Divisions in any local programs to talk to parents about immunisation.
As there has been considerable media attention to the issue of immunisation and to Federal Government plans to encourage increased immunisation, the Committee felt that a further letter to Divisions would be timely. These letters were sent late February - early March.
As a result of these contacts the following activities have been established:
Blue Mountains I attended a GP/consumer forum as part of a project to assess consumer requirements. The follow-up focus group was in work hours and I could not attend. Subsequently I have been informed that they are considering an immunisation program and will contact me at that time.
Canterbury An approach has been received to have a member participate in the advisory program which is to be set up and also an immunisation program. Janet Malone has been nominated.
Central Sydney Joan Mobey has joined the consumer advisory group and is active in this role.
Fairfield Contact was received regarding participation in an immunisation program but the anticipated information regarding dates and venues was not received. Subsequent information was received which indicated that their program was a technical one and not relevant to us. However, they are now co-operating with Bankstown Division which has funding to provide GPs with the skills needed to give community talks.
Hornsby Ku-ring-gai Invitations were received for two public forums. We are seeking one member in each of the Hornsby and Ryde/Hunters Hill areas to join the consumer networks. Hornsby meets monthly and Ryde every second month. There is also a GP/ Consumer Liaison Committee to which recommendations of the networks are forwarded. It also meets monthly and members are nominated for a 12-month period. It would be a pity to not take up the opportunity to participate in these committees. Please contact me (details below) if you are interested. Copies have been received of the outcomes from the forums and of newsletters.
More recently I have received a phone call to say that my letter has been passed to the hospital sister who is in charge of immunisation and that they are seeking approval to have a program in schools. They will contact me again when this is program is to commence.
Hunter Urban Information requested on local contacts was provided.
Manly-Warringah Information supplied for a Health Services Directory.
St George Contact has been made regarding possible involvement in health promotion programs for parents, including discussion on immunisation.
Tweed Valley Information was provided for a Resource Directory.
Any member, whether or not you are in one of the areas from which we have hade contact to date, who is interested in participating in either consultative processes or immunisation programs please contact me on Phone (047) 58 6637, Fax (047) 58 7169, or send me a note to PO Box 38, Woodford NSW 2778. I look forward to hearing from you.