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Ineernaticbna! Netavork Now called SAINT LOUIS,MISSOURI USA post-Polio1 H~a7fh Spring 2001 a Vol. 17, No. 2

Breathing Problems o io Survivors

i the diaphragm is weak. Conse- i quently, a weak diaphragm has I difficulty sustaining adequate , especially when lying down. This leads to a decreased 1 level of in the blood, or Sa02 desaturation. Sa02 desat- / urations can extend into non- REM sleep and contribute to arousals, inducing sleep frag- Haw did acute poliomyelitis Now does respiratory muscle mentation, and decreasing the affect breathing? What is weakness affect breathing? amount of time in REM sleep. bulbar polio? What is spinal The diaphragm is the key muscle The quality of sleep deteriorates. polio? for inspiration (breathing in). What are the signs sf When it is weakened by polio, The poliovirus affected, in many breathing problemst different patterns, the nerve the work of breathing becomes A polio survivor experiencing cells in the lower brain (bulbar) harder, especially when a person a combination of any signs and and spinal cord that control is lying down. With each breath, symptoms in the following list the muscles of the body. Polio- the abdominal contents have to should immediately seek a respi- virus does not damage the be pushed down, but when sitting ratory evaluation, preferably by tissue or. the nerves to the air- upright, gravity assists the dia- a pulmonary physician way muscle. phragm by pulling the contents (pulmo- down. Polio survivors, especially nologist) with experience in When the bulbar nerves were those with scoliosis, compensate newomuscular . destroyed (bulbar polio), the m us- by breathing faster but more z on cles of the throat were weak- shallowly because they lack the exertion (dyspnea) This resulted in ened. muscle strength to stretch a stiff during eating and a diminished i o Need to sleep sitting up rib cage. They may also have ability to . () smaller lung volumes that further 2 Retention of When the spinal nerves were reduce respiratory muscle effi- affected (spinal polio), muscles ciency and drastically increase i (C02) of the arms and legs, and the work of breathing. This can i - morning headaches trunk muscles needed for lead to underventilation and - poor concentration and breathing and for taking a deep respiratory failure. impaired intellectual function breath for coughing were weak- i ;I Sleep disturbances ened. Polio survivors may have Haw does respiratory muscle weakness affect sleep? -not feeling rested in the had some combination of bulbar morning and spinal polio. so there may Respiratory muscle weakness CONTINUED ON PAGE 2 be corresponding throat muscle contributes to sleep-disordered and limb/respiratory muscle I breathing. During REM (rapid weakness. Involvement of the / eye movement) sleep, relaxation upper part of the spinal cord j of many voluntary muscles. weakened the key breathing 1 including the shoulder. chest. muscles - the diaphragm and ) and abdominal muscles, often chest musculature. f occurs. And, these muscles are 1 used to assist breathing when - sleepiness during the day should be aware of potential is not immediately aware that - dreams of being smothered problems. Those survivors who anything is wrong, and a treat- and/or nightmares did not need ventilatory assis- ing physician may not recognize - restless and/or interrupted tance during the acute phase, the signs or be familiar with sleep but who had high spinal polio the option of home mechanical resulting in upper body weakness ventilation. The person's spouse - fatigue or exhaustion from and/or diaphragm weakness, or family should be questioned normal activities and those with scoliosis (some- about , - times referred to as chest wall changes in activity levels and 2 Claustrophobia and/or feeling deformity) may also be at risk. breathlessness, and sleeping that the air in the room is patterns. Other factors contributing to somehow bad breathing problems are , Additionally, facing breathing 3 COPD, smohng, obesity, and difficulties can be frightening, 2 Difficulty in speaking for more sleep : either central, for both the survivor and their than a short time obstructive, or mixed. loved ones, and there can be a reluctance to address them. o Quiet speech with fewer words Another compounding factor is Sometimes this fear stems from per breath diminished vital capacity (VC), inaccurate information about which happens to everyone as o Use of accessory muscles to the problem and the solutions they age. breathe or from earlier polio-related 2 Weak cough with increased Why da these problems experiences. susceptibility to respiratory aften go unnaticed? infections and The reasons are varied and can The alveoli in the are tiny be complex. The onset of respi- Are all polio survivars at risk air sacs at the end of the respi- ratory problems is insidious, and for breathing problems? ratory tract where gas exchange this gives an individual time to with the blood occurs. In under- No. Individuals who used an become accustomed to each ventilation (medically known as iron lung, or barely escaped decrease in function. Thus, one one, during the acute phase chronic or global alveolar hypo- ventilation), the saturation of oxygen in the blood falls due to / Contributors to Underventitation in Polio ~urvivbrs ! increased carbon dioxide (CO2). Normally the alveoli should clear most of the C02 out with each breath. Instead, the C02 accu- mulates (called ), and thus there is decreased room in the alveoli for oxygen. Hypercapnia and decreased are the hall- marks of underventilation or . The signs and symptoms of underventilation usually appear first during sleep. Some people seem to suddenly experience life-threatening respiratory failure due to C02 accumulation (hypercapnia). They may not have been aware of gradually increasing symptoms and signs, particularly since With special thanks to Judith My appreciation to Tony Oppen- they are often not physically Raymond Fischer, volunteer editor heimer, MD ([email protected]),and active nor regularly monitored of IVUN News, this issue of Polio to ventilator user Linda L. Bieniek with simple pulmonary function Network News features the breathing for their insightful reviews. tests. Polio survivors may think problems of polio survivors. We all struggled with what to that they are breathing fine until Why dedicate a whole issue to include and how to explain a com- an upper respiratory infection? this subject? plex topic briefly and simply - one which makes breathing in harder #I A common misconception about that really may apply to you. for everyone, causes serious home is that -Joan 1. Headley, MS problems, partially due to an it is the same as being in an ICU - Executive Director, GIN1 ineffective cough and the inabili- unconscious, intubated, and con- ty to eliminate secretions. nected to a large hospital ventiia- tor - as depicted on popular med- Who is the most quaiified ta ical TV shows. Using a ventilator at evaluate breathing problems? home is very different, as described Astute family physicians will by polio survivors Jean Davis and order a referral to a pulmonolo- Marion Gray (beginning on page gist, preferably one experienced 9), who sent photographs of their in neuromuscular disease. Pul- satisfied and well-ventilated selves. monologists specialize in all #2 It is the one aspect of the late breathing-related disorders, effects of polio, besides swallowing, however, most focus on more that could be potentially life- acute problems such as intensive threatening. And, in my travels, care. The pulrnonologist who I continue to hear stories from focuses on neuromuscular dis- polio survivors who have breath- eases understands that the prob- ing difficulties. lem is due more to respiratory #3 1 know many polio survivors muscle weakness and the restric- who now use nighttime ventilation tive nature of the disease rather and feel so much better, but their than the lungs themselves. pathway to this relief was through The IVUN Resource Directory the emergency room. I believe our compiles a list of pulmonologists Network is obligated to provide knowledge to prevent this from and respiratory health profes- happening to others. sionals who are knowledgeable about and committed to home #4 This issue is a good way to care and long-term mechanical educate polio survivors who, in ventilation. It is available at turn, can educate their doctors. I www.post-polio. org/ivun. html have heard the comment,"l am or in hard copy from not having breathing problems. International Polio Network. The physician checked my lungs and they are fine." Or,"The physi- What tests wilt a cian checked my breathing and pulmonologist order? said it isn't bad enough yet and he didn't think I would want to use a Pulmonary function tests can ventilator this young." be performed in a physician's office with a simple #5 The decision about the type of (an instrument for measuring ventilation to use and when it will the capacity of the lungs) or begin should be made in collabora- tion with your doctor and your in a fully-equipped pulmonary family.The purpose of this Polio function laboratory. Network News is to ensure that the

CONTII\IUED ON PAGE 4 decision is an informed one.

Pouo NETWORKNEWS I SPRING 2001. VOL. 17, No. 2 3 Pulmonary function tests should j blood and assesses pulmonary 1 What is sleep apnea? include: gas exchange. A noninvasive Defined as the lack of breathing Vital capacity (VC) both sitting measurement of oxygen satura- through the nose and mouth for and supine (lying down), FVC, tion in the blood is pulse oxime- at least ten seconds, sleep apnea FE V1. VC measures the total try, but it is not as complete or can be obstructive or central or volume of air one can breathe sensitive as an ABG. mixed. Obstructive sleep apnea out completely after inhaling a (OSA) occurs when tissues in What is puke oxirncltry? full breath. VC is usually done the throat collapse and block forced, as fast as possible, and The blood oxygen saturation can airflow in and out of the lungs is known as FVC. When this fast be measured noninvasively using during sleep, although efforts to forced expiration is performed, a pulse oximeter. It is a probe breathe continue. Central apnea the volume breathed out in the placed usually on a highly oxy- occurs when the brain fails to first second is known as FEVr . genated part of the body, such send appropriate signals to the VC is sometimes done slowly as the finger. Infrared light is body to initiate breathing. There and is called SVC. These tests released and analyzed by record- is neither airflow nor chest wall can be done while standing, sit- ing its changing absorption in movement. the arterial blood. Nocturnal ting, or supine. A drop in VC In sleep apnea, breathing ceases, over 25% in the supine position oximetry is becoming more use- ful in screening for abnormalities oxygen in the blood decreases, indicates significant diaphragm arousal occurs, sleep ends, and weakness. When VC declines to that often occur first during sleep. Some oximeters have a memory breathing resumes. The individ- <1 L (liter), underventilation ual then drifts back to sleep and often occurs. module to record 8-12 hours of oxygen and pulse rate data. another apnea occurs, with this MIF and MEF. Maximum inspi- cycle continuing throughout the ratory force (MIF) and maximum What is a sleep study and night, resulting in hundreds of expiratory force (MEF) are mea- when is it necessary? arousals from sleep. sured by breathing in and out Sleep studies (formally known OSA at first occurs when indi- with maximal effort, through a as polysornnography) are usually viduals sleep on their backs, but closed mouth tube attached to a performed in a sleep laboratory eventually apneic episodes are pressure measuring device. This over one or two nights to record present with any sleep position. measurement reflects inspiratory multiple variables simultaneously, A number of factors make snor- . and expiratory muscle strength. such as sleep stages, rapid eye ing and apnea worse, such as Peak cough flow. In people movement (REM), snoring, air- obesity and nasal obstruction. who have had polio, cough is flow at the nose and mouth, causes the lining of the often not effective enough, due arousals, heartbeat, chest wall upper airway to swell, alcohol to respiratory muscle weakness. breathing motion, and oxygen and sedative drugs cause the A weak cough can lead to poor saturation, to assess sleep dis- muscles in the back of the secretion removal, increased orders (such as sleep apnea). upper airway to relax, and respiratory infections, and These studies include EEG (brain excessive weight decreases the . wave), ECG (electrocardiogram), size of the upper airway. and often a video record of When there are nighttime is ABG sleep movements. What aw and should breathing problems in a person polio survivors who suspect Sleep studies are recommended with neuromuscular disease, breathing problems for an individual exhibiting signs such as post-polio, they are hawe one? of nocturnal underventilation, more likely due to respiratory An arterial blood gas (ABG) but not daytime underventilation. muscle weakness, rather than should be ordered when VC falls or for asymptomatic individuals OSA. However, some individu- or symptoms of underventilation with a VC <1to 1.5 L. als may have only OSA while develop. An ABG invasively Sleep studies are often recom- others may have both respirato- measures levels of oxygen, mended to detect sleep . ry muscle weakness and OSA. carbon dioxide, and pH in the What is the treatment for after the acute illness is over If ii need mechanical wentila- sleep apneal and may require long-term MV. tion, what are the options? Sleep apnea is best treated with Other people may have a stable, The older technology of nega- the use of a continuous positive chronic condition that prevents tive pressure ventilation, which pressure airway (CPAP)device them from breathing on their developed during the polio epi- to push the tongue out of the own; they may need to use a demics to keep respiratory polio way and keep the airway open ventilator only at night or both survivors alive. has given way to during sleep. If underventilation at night and during the day. the newer technology of positive and sleep apnea occur simulta- Assisted breathing through pressure ventilation. neously, a bilevel positive pres- mechanical ventilation can help Negative pressure ventilators sure device is recommended to people sleep better and result in apply intermittent negative pres- help improve ventilation and improved lung function during sure (like a vacuum) to the chest also keep the airway open. the day. MV can restore the gas and abdomen by means of an exchange and prevent respira- What is CPAP? iron lung or Porta-Lung, a chest tory failure. sheil (cuirass), or a form of body CPAP stands for Continuous jacket or wrap. Some polio sur- Positive Airway Pressure. Air Whew is mechanicaf vivors still use the iron lung, flows continuously into the air- ventilation an option? Porta-Lung, or cuirass. way via the nose with use of A general guideline, but not a a nasal mask. CPAP keeps rule, suggests that mechanical The pneumobelt is also still the airway open, but does not ventilation be initiated when used. It is an inflatable corset adequately assist respiratory there is a 50% decline in VC around the abdomen which acts muscle activity. or a VC of under 1 L. Each by pressing on the abdomen to augment exhalation. Inspiration CPAP is primarily used to treat symptomatic survivor needs a is not assisted. The pneurnobelt obstructive sleep apnea, and thus comprehensive evaluation by can only be used in the upright, is normally used only at night a knowledgeable physician to seated position and does not during sleep. CPAP units are not determine when to start MV. work if one is either underweight ventilators. Higher pressures may This is especially true of the sur- or overweight. make exhaling uncomfortable vivors of bulbar poliomyelitis. and difficult. Newer CPAP units, Mechanical ventilation helps rest Positive pressure ventilation uses called Auto CPAPs, automatical- the respiratory muscles, resets a bilevel pressure support device ly provide varying levels of pres- the sensitivity to C02 of the or a volume ventilator to deliver sure based on the individual's controller in the brain. and air nonipvasively via a face mask, needs during the night. Because improves pulmonary mechanics nasal mask, nasal pillows, mouth- OSA is prevalent among the by providing more functional piece, lipseal, or oro-nasal com- general population, many com- lung expansion. bination, called noninvasive posi- panies offer CPAP units. tive pressure ventilation (NPPV). is exercise a treatment Positive pressure can also be option? delivered invasively through a Chest expansion exercises may tracheostomy tube (TPPV). Mechanical ventilation is the help keep the chest wall more use of machines to help people elastic and avoid loss of lung \What is the difference breathe when they are unable to volume. There are four ways between a biteve! device and breathe sufficiently on their own. this can be done: with an ;a voBume ventilator? It is most often used for a few Ambu-type resuscitation bag, Bilevel pressure devices continu- days in a hospital setting, when using a volume ventilator for air ously deliver air, but the inspira- people are recovering from sur- stacking, using glossopharyngeal tory pressure can be adjusted gery or during a serious illness. (frog) breathing, or using an separately from the expiratory However, some people may be IPPB (intermittent positive pres- pressure. Bilevel devices are also unable to breathe on their own sure breathing) machine. used with a face or nasal mask

CDNTINUED ON PAGE 6

POLIONETWORK NEWS B SPRING701 .Vm. 17. No. 2 or nasal pillows, and, like CPAP, used for 24 hours, and are well- Whether to use a portable volume used mainly at night. However, suited for tmcheostomy use. ventilator or bilevel pressure bilevel devices can only deliver a Examples of volume ventilators device is an important decision. certain amount of pressure that Sometimes the choice reflects include the LP6 Plus, LP10, and may not be enough for people the experience and training of Achievaa from Puritan Bennett, with respiratory muscle weakness PLVQ-100 and PLV@-102from the pulrnonologist or respiratory therapist. Often cost is a factor. and underventilation. There are Respironics, TBird@Legacy from many bilevel pressure devices Thermo Respiratory Alternate In Europe, the costs of the bi- on the market, but the only one Care, and PV50 1 from Breas. level pressure devices and the that can be truly called BiPAP@ volume ventilators are not as is from Respironics . I A new generation of ventilator I disproportionate as they are in technology has produced the the United States. Compared with volume ventila- LVseries from Pulmonetic tors, bilevel devices are light- Systems, Inc. .These new ventila- The ventilator which is most weight, less expensive, easier to tors are compressorless and run comfortable for the user and fits use, and adjust better to leaks. his or her individual ventilatory by turbines. They are very small However, disadvantages include - about the size of a laptop needs best should be. the over- not being well-suited for tra- riding choice. The physician, computer - and lightweight, cheostomy ventilation, having about 13 lbs., but more expen- respiratory therapist, and ventila- no internal battery, not as com- sive. They also have the capabil- tor user should collaborate on monly used with an external determining the best system, al- ity to offer both volume and battery, may be noisier, and the though ventilator users are not pressure support. expiratory pressure is unneces- often given the opportunity to try sary for some people and rnay Who decides which different ventilators and systems. cause thoracic discomfort. equipment to use? Howl "here is the best iacatian ts Examples of bilevel devices 'The answers to these questions start noninvasive positive include Respironics Bi-PAP@ focus on whether there is pressure ventilation (MPPV)? S/T and BiPAP@Synchronym; breathing muscle weakness or Puritan Bennett KnightStar whether there are reasonably Generally, NPPV is started in 330@and KnightStar 320@; normal breathing muscles but the home by a respiratory thera- ResMed VPAPB I1 ST; and obstructive sleep apnea (OSA). pist from the home health care Breas PV102. agency or 'durable medical equip- If there is nighttime breahng Volume ventilators deliver a pre- ment (DME)provider, as ordered abnormality due to muscle weak- by the physician (who is not set volume of air. These machines ness, it is best treated with a can deliver much more air than present). However, home health machine that assists ventilation, respiratory therapists have limited bilevel devices, and thus enable such as the aforementioned deeper breaths for improved time, and the home health care bilevel pressure device or vol- agency does not receive reim- coughing and air stacking. They ume ventilator. may be necessary for people bursement for the time needed. with poor lung elasticity, such If the upper airway tends to close The therapist usually cannot as those with pulmonary fibro- off during sleep, OSA occurs. demonstrate the whole range of sis, and stiff chest walls, as with This is often successfully treated equipment and interface options kyphoscoliosis, when bilevel is by continuous positive airway available. Followup is needed not enough. Volume ventilators, pressure (CPAP) which delivers repeatedly in the first months to though larger and heavier and a constant flow of air to keep ensure that the equipment and more expensive than bilevel the airway open. It is certainly interfaces are comfortable and units, are quieter. have more possible to have weakness in working properly to achieve alarm features, overcome airway the throat/pharyngeal area that optimal benefit. secretions and resistance, have produces OSA, without weak- The use of NPPV can also be an internal battery, work from ness of the breathing muscles. initiated as part of hospital dis- battery power easier, can be If this is the case, CPAP is the charge, where there should be appropriate treatment.

6 POLIONnwot?~ NEWS BW SPRING2001, Vot. 17, No. 2 more time to do it properly. However, many pulmonary critical care physicians are highly ICU-focused, and they and the respiratory therapy staff may not have the experience and interest needed to get optimal results. When possible, the best approach may be for the individual to visit the home MV unit of a medical center for daytime assessment and for teaching the use of NPPV. The person can try vari- ous equipment and interfaces to see which would work best under the guidance of an experi- enced physician and respiratoy therapist. The day visits can be repeated as needed for setup and followup. This is in addition to the home health care/DME company's home visits after the system is selected and ordered.

What does a respiratory therapist do7 Respiratory therapists work under the direction of a physician, usually in hospital settings where they perform intensive care, critical care, and neonatal pro- cedures. Polio survivors usually interact with a respiratory thera- pist in their physicians' offices and/or in their homes during visits from a therapist hired by a home health agency or a home medical equipment supply com- pany (Apria, Lincare, et~.). Respiratory therapists perform procedures that are both diag- nostic and therapeutic. Some of these activities include: taking arterial blood gas (ABG)speci- mens and analyzing them to determine levels of oxygen, car- bon dioxide, and other gases; measuring the capacity of the lungs to determine if there is

CONTINUED ON PAGE 8 impaired function; and studying tions include a severely impaired What about oxygen? disruptive sleep patterns. Respira- cough and inability to clear Tony Oppenheimer, MD, retired tory therapists help set up and secretions, and significant swal- physician in pulmonary and criti- maintain the various equipment lowing problems. Some polio cal care from Southern (CPAP and bilevel devices, venti- survivors who need 24-hour California Permanente Medical lators) to assist breathing, adjust ventilation may prefer to use Group, cautions, "Administering the settings, adjust the mask or noninvasive ventilation. oxygen does not provide assis- other interface, instruct in their The decision to undergo a tra- tance to the weakening respira- use, and monitor compliance. cheotomy is a serious one and tory muscles, but gives both the patient and the doctor the false What is an interface? should be made by a fully informed individual along with impression that appropriate treat- An interface connects the tub- caregivers in consultation with ment is being provided. Under- ing from the volume ventilator, the physician. ventilation is mistaken for an bilevel device, or CPAP to the oxygen transfer problem. Indeed, person using it. Examples How can s polio survivor administering oxygen can mask include nasal or facial masks, improve cough? the problem. nasal pillows, lipseal, mouth- Retained secretions in people piece, or tracheostomy. Often "Also there is a danger of caus- who have impaired coughing the individual is handed only ing respiratory depression by ability can turn a common cold one mask to try by a respiratory giving oxygen. It will improve into pneumonia. To improve therapist from a home health the oxygen saturation, but not cough, there are two forms of care company, but several dif- the underventilation. It may assisted coughing. ferent masks may need to be increase the danger of dying of tried in order to find one that Manually assisted coughing sudden respiratory failure. fits properly. Many people do involves another person adrnin- "Some situations may require best when they can choose at istering a thrust to the chest administering oxyy en, such as least two (nasal) interfaces that and abdomen of the individual cor pulmonale or pneumonia are comfortable and rotate with neuromuscular disease due to infection or aspiration. between them. Individuals can immediately after that individual If this occurs in people with use a mouthpiece if they have takes a big breath. respiratory muscle weakness nasal congestion due to a cold. Mechanically assisted coughing and hypoventilation, then it is Adapting to and making adjust- can be performed with the important to provide both assist- ments to an interface is critical CoughAssistmby J.H. Emerson ed ventilation and supplemental and often requires patience and Company. The CoughAssist oxygen, and use ABGs to moni- determination. Many users cre- applies positive pressure to 'pro- tor them." atively adapt their masks to vide a deep breath in, then A useful analogy from Lisa S. achieve the best fit. shifts rapidly to negative pres- Krivickas, MD , Spaulding sureto create a high flow out, Rehabilitation Hospital, Boston, What is a tracheortarny and as with a normal cough. in regard to people with respira- when is it necessary? tory failure from neuromuscular A tracheostomy is an artificial What is cor pulrnonalef disease is that the lungs are like airway created during a surgical Cor pulmonale (right-sided deflated balloons that are not operation called a . failure) can occur in post-polio strong enough to inflate. A tracheostomy may be neces- and in other diagnoses, such as sary for polio survivors who can- COPD. In both, the low oxygen To inflate the balloon, mechani- not tolerate noninvasive venti- level causes pulmonary hyper- cal assistance to force air into lation, for those who can no tension, liver enlargement, and the balloon is needed. Blowing longer be adequately ventilated swollen feet. Cor pulmonale is oxygen across the mouth of the noninvasively, and for those who detected by a careful physician balloon (the equivalent of using need ventilation more than 20 examination, keeping respirato- supplementary oxygen delivered hours per day. Other considera- ry muscle weakness in mind. I?$ My Journey trt a Good Night" Sleep :5: by nasal cannula) will do nothing 1 Marion Gray, Oakland, California $ to inflate the balloon. a When I was 5 years old. I con- ; myself on my abdomen could tracted polio. The family doctor. i help while trying to cough. I still summoned to my home, carried j we that same method. me out the front docr. I have j in the early '80s. I attended a American College of Chest Physicians. not retained much ol ' the ! GINI conference in Saint Louis. ing weeks and montt 1s except ' (1998). Mechanical ventiJatienbeyond the i There was a lot of talk about intensive care unit- report of a cansensus that my parents were kept away breathing and respira- conference of the American College of 1 from me, and, at-- snmp----*- mint I------• j tov intections. 1 remember Chest Physicians. Chest, 113, Supplement, I felt that I was suffocating. 2895-3445, 1 Augusta Alba, MD,mentioning T ---& - -1- --A :- 1 ~d:,pldc;t:u 11 1 an iron lung, Bath, J,R. (I999). Guide to the evaluat.ion L. -L -1 - -L 1 the possibility of "drowning- in DUL uo rwi. and management of neuromuscular dis- your secretions" remember how ease. Philadelphia, Pk Hanley & and the necessity long. Rather than Belfus, lnc. of dealing with being sent to a Bach, J.R. (19961, : this aspect rehabilitation facil- The obstructive and paralytic condjrions. of the late effects Philadelphia, PA: Hanley & Beifus, Inc. ity, I returned of polio. One of home and had vis- Fa her, H.K. & Amoss, H.L. (1 956).Acute the vendors had a poliomyelitis. In Tice's Practice of Medicine. its from a physical chest shell breath- 335-359. therapist. I had leg ing device that I Fischer, J.R. & Headley, J.L. (1 995). Post- braces, a stmnge tried. Someone polio breathing and steep problems. arm brace that nearby said, "You IVUN News, 1 1 [4), 2. held my right arm @ should have seen Gay, f?, & Edmonds, 1. (1 995). Severe straight out from . . hypercapnia after low-flow oxygen thera- the look on your my shoulder and ' py in patients with neuromuscular dis- face when you bent at the elbow, f$ ease and diaphragmatic dysfunction. $$s:. ~edfiat thing. " .Mayo Clinic Proceedings, 70 (41,327-330. and a little wheel- F.. ..,s...... '." So &at is what it , . : ...... chair...... '? :.:;'.:,: tjz felt like to breathe! Hill, N.S, (2001). Long-term mechanical .: : .... :..... << ..:...... ,...... : ::<... '+...... '4: ventilation. New Yerk, NY: Marcel . I did not attend Dekker, Inc. Schocl =.-C:I +L:d Back home in Hsu, A. & Staats, B. (1998]."Postpofio" grade, anc sequelae and sleep-related disordered time I had rossea me breathing. Mayo Clinic Proceedings,73, 2 16-224. wheelchair. Brez " ' seem to be an i! Maynard, F. & Headley, J. (3 999). Handbook age 8, I had a spinal ruslon and on the late emsof poliomyelitis for physi- I monary doctor told me thai, was out of schonlu1 $--LVI C-**-+LlVUl Ll 1 cians and survivors. Saint Louis, MO: because I had not died during Gazette International Networking 5ichool for fifth grade. Back in 1 the initial attack of polio and Institute. grade, I used a I#heelchair for no longer used the iron lung, I Oppenheimer, E.A. (2000).Oxygen trips to the playground where / 1 -1 * ! could not have breathing prob- is NOT for hypoventilation in neuramus- the c"mer cnuaren used me as t cular disease. lVUN New, 14 (1 ), 4-5. a bat tering ram. [ lems related to polio. I did not Rornaker, A. (19953. New breathing prob- 1 believe him, but did not feel in lems in aging polio survivors: respiratory g2 Around this time, I remember serious trouble except when I rn uscie weakness. Polio Network News, g having difficulty coughing up / caught a cold. 1 1 (43,1,7-8. secretions when I had respirato- nightmares of ry infections. I remember being : : drowning or suffocating, waking embarrassed in class while try- : up choking. morning headaches, ing to cough, terrified that I and. worst of all, getting up would choke to death. Years i j and down many times during later. I figured out that shoving ; CONTINUED ON PAGE 10

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