International Polio Network SAINT LOUIS, MISSOURIUSA Winter 2003 .Vol. 19, No. 1 Porro NEWORKNEWS

Straight Answers to Your "Cramped" Questions Holly H. Wise, P7; PhD, and Kerri A. Kolehma, MS, MD, Coastal Post-Polio Clinic, Charleston, South Carolina

Tired in the morning? Is it diffi- Cramps can occur throughout origins anywhere in the central cult to get comfortable for a good the day but more often occur at and peripheral nervous systems night of sleep? A complaint often night or when a person is resting. and may explain the wide range reported at the Coastal Post-Polio Although it is not known exactly of conditions in which the Clinic in Charleston, South why cramps happen mostly at cramping occurs (Bentley, 1996). Carolina, is the inability to get these times, it is thought that to sleep at night due to leg pain, the resting muscle is not being Seeking Answers twitching, or cramping. stretched and is therefore more A thorough history and possibly easily excited. Muscle cramping is a relatively a referral for screening labs will common, painful, and bother- The basis for the theory that help determine the causes for some complaint among generally I cramps occur more at rest, due to I leg pain and cramping. Polio healthy adults, and is more com- I the muscle not being stretched, I survivors can provide a descrip- mon in women than men. Some I is that passive stretching can I tion of their muscle cramps, studies estimate as many as 50- 1 relieve muscle cramping. Pain I identification of the time and 70% of older adults may experi- I associated with cramping is likely I place when they occur, and an ence nocturnal leg and foot I caused by the demand of the I activity log of the 24-48 hours cramps (Abdulla, et. al., 1999). Al- overactive muscle exceeding its preceding the episode(s). For though, leg cramps are a com- metabolic supply. This excessive example, if after a vigorous mon complaint in older adults, demand results in ischemia, or exercise session or a particularly they must be taken seriously when diminished blood flow, to the long walk, a polio survivor's the individual is a polio survivor. muscles, and the accumulation muscles are noticeably twitch- of metabolites (waste products). ing, aching, or painful, then the WhaC is a muscle cramp? activity probably exceeded the AKA "stitch," "spasm, " "knot, " Causes of Leg Cramps strength of the muscle. "Charley- horse, " or "twitch." Twitching and cramping can be In addition, the physical exami- Muscle cramping involves a caused by over-activity of nerves nation should include: physiological disturbance of and muscles from faulty posture, + Observation of edema, or muscle that produces an invol- shortened muscle length, and swelling in the legs, and an untary and painful contraction. excessive activity or exercise. examination of the circulation, Cramps typically occur in the calf Other known causes of muscle or vascular supply, to the legs. muscle and are accompanied cramping include diabetes mellitus, Occasionally, a diagnostic ultra- by sudden excruciating pain and kidney failure, thyroid or neurol- sound test (a Doppler) will also persistent muscle contraction. ogical disorders, and poor blood Occasionally, both legs may be CONTINUED ON PACE 2 flow or peripheral vascular dis- affected by cramping simultane- ease. In addition, certain medi- ously. Although cramps often cations and occupational routines resolve spontaneously within can precipitate muscle cramping. minutes of onset, the episodes Bracing Options ...... 4-5 may continue for hours or days Recurrent cramps without a with no apparent pattern of known cause are called idiopathic Ocular Health and Pulmonary frequency or duration. cramps. These cramps are sus- Assist Machines ...... 6 pected to be the result of disrup- Treatment Approach Options . . . 9 I tions or imbalances of unknown Hdly H. wise, PT, PhD, and Kenl ~d founders and team members of the Coastal Post-Polio Clinic, 354 Folly Road in Charleston, South Carolina, established in 2000, along with jenny Adams, CPO. be performed to determine the adequacy of blood flow in the legs. Dr. Kolehma ic a physiatrist who is board-certifted by the American Academy of Physical Medicine and Rehabilitation. In addition to her private practice, + Baseline measurements of Coastal Pain & Rehabilitation Center, PA, Dr. Kolehma is also Clinical Associate joint and range of motion Professor of Neurology at the Medical University of South Carolina. to establish if there are shortened muscle lengths and limited motion Dr. Wise is a physical therapist and has worked with polio survivors since contributing to the cramping. 1984'. In 1994, she co-founded the University of Miami Post-Pdio clinic with Carol Vandenakker, MD, where she worked until 1997 when she + Manual muscle tests (MMT) of relocated to Charleston. Dr. Wise is currently an Assistant Professor in the the arms, legs, and trunk muscles Physical Therapy Educational Program, Department of Rehabilitation Sciences, to identify which muscles, if any, College of Health Professions, Medical University of South Carolina. are at risk for Overuse and sub- The authors mybe contacted at [email protected] wisehhOmusc.edu. sequent cramping. In general, muscles with a strength grade less than a 3 on a 5-point scale muscle twitching, cramping, include the reduction in the are at risk for overuse. and pain. intensity of cramping episodes, + Posture, gait, and/or a mobility As with the general population, number of cramps per episode, assessment complements the nocturnal muscle cramping in and/or in the number of nights information gathered from the polio survivors may also be free of cramps. MMT. Faulty posture is associat- idiopathic in nature and not just ed with cramping and particular related to overuse of muscles What about quinine? attention should be given to affected by polio or the other Any new treatments? inefficient patterns of movement known causes listed above. The The standard pharmacological due to muscle weakness. first line of treatment is to stretch treatment that has been used for the leg muscles before sleep, over 50 years is 300 mg quinine Prevention and avoid caffeine in the evening, taken at night. The outcomes Treatment of Leg Cramps and eat foods high in potassium are substandard with about 40% The treatment approach for (bananas, orange juice, etc.). of individuals getting relief (Diener, et. al., 2002). The medicine must non-idiopathic cramps - cramps To accomplish self-stretching, in which the underlying cause polio survivors can put their foot be taken for one month to truly is known - is to treat the under- flat on the floor and slowly put tell if it is going to work, and lying cause. The only proven weight on the foot. This action does have side effects: ringing strategy for the prevention and stretches out the calf muscle, in the ear (tinnitus), dizziness, treatment of exercise-induced which can also be done in bed blurry vision, and headaches. muscle cramps is the avoidance by "pointing your toes towards Newer treatments include vitamin or reduction of activities that your nose" until the cramping E or calcium gluconate, both of cause cramping. stops. Applying heat and massag- which are available over the coun- Strategies to reduce muscle over- ing the cramped muscles can ter. The beneficial effects of these use may include lifestyle changes, provide relief, as can wearing non-prescription treatments on such as weight reduction, use night splints that help prevent nocturnal cramping have not of assistive and orthotic devices, muscle shortening. Individualized been studied in detail. rn and the adoption of energy intervention sessions with a conservation techniques. Other physical therapist and/or referral strategies include advice from to a certified orthotist are usually a physical therapist to create required to correct muscle REFERENCESAND RESOURCES efficient mobility patterns and imbalance and faulty posture. Abdulla, A.J.J., Jones, P.w., & Pearce, V.R. (1 999). Leg cramps in the elderly: Prevalence, to intentionally pace day-to- Although no treatment is con- drug and disease associations. International day physical activities. These clusively effective, many people lournal of ~linicalPractice, 53, 494-496. approaches are designed to achieve temporary relief of Bentley, S. (1 996). Exercise induced muscle allow for sufficient rest of over- symptoms with one or more of cramp - Proposed mechanisms and manage- used muscles and to eliminate these treatments. Success would ment. Sports Medicine, 21 (6))409-420.

2 POLIO NETWORKNEWS WINTER2003, VOL. 19, NO. 1 It happened again. I received We want you to continue living another phone call from a life, and our mission is to offer reporter who wanted to know you information and options. International Polio Network "what polio survivors think." As an organization, we consider (IPN),coordinated by Gazette He wanted to know what polio the generous contributions you survivors thought about the cre- International Networking Institute sent as a stamp of approval for ation of the poliovirus at SUNY (GINI), has received a grant from the work we are doing. Although SPIN, a charitable organization at Stony Brook last year. I held you are not listed on page 8, in Chicago, Illinois. The grant that some polio survivors were those you chose to honor are. for $3,000 was awarded to help surprised, a few were angry, We thank you for your financial individuals purchase a scooter. but that the majority was silent support and for letting us know on the topic. I further explained "what you think." In order to assist the greatest that in my experience, polio survivors and their opinions are -Joan L. Headley, MS number of individuals, IPN will Executive Director, GIN1 provide up to $500 per appli- representative of the population cant. If you are a polio survivor in general. or you use a ventilator, and How do I know? I hear from you and/or your insurance are you. So, let me assure you that unable to meet the complete the lead article on cramping and cost of the scooter you plan to overuse is intended to caution purchase in 2003, please con- polio survivors. I am not saying ------tact Justine Craig-Meyer at IPN we should stop "living life." Pdio NMNW (ISSN 1066-5331) for an application. There is no W~nter2003 .Vol. 19, No. 1 deadline for applying and the The articles about bracing are An intematb~~lnewsletter for pdio meant to inform you of current wndvors, health prof~ssionals, payments will be disbursed and resource centen to exchange as eligible and qualified indivi- options. They are not advertise- ments and the companies did not information, emmge ref~atch, duals apply. rn and pmtenetworking among pay us to print the information. the post-polio community I have printed the article about ISSUED QUARTERLY "Disability and Wellness," to International Polio Network (IPN) reinforce the message that people 4207 Undell Boulevard, #I 10 Saint Louis, MO (Missouri) 63108 USA Diener, H.C., Dethlefsen, U., Dethlefsen- with disabilities can experience 31 4-534-0475 U 31 4-534-5070 fax Cruber, S., & Verbeek, P. (2002). Effective- good health. Our organization Relay MO: 800-735-2966 TDD, 2466 V ness of quinine in treating muscle cramps: [email protected], www.post-polio.org A double-blind, placebo-controlled, paral- encourages us, as polio survivors, COORDINATEDAND PUBUSHEDBY. lel-group, multicentre trial. International to focus our energies on what Gazette lntemational Networking Journal of Clinical Practice, 56(4), 243-246. we can do, in conjunction with Institute (GINI) Drug Information Handbook. (1 999). societal attitudes, our health EDITOR: Joan L Headley, MS, Hudson, OH: Lexi-comp Inc., 875-876. professionals, families, and Executive Director Guide to Physical Therapist Practice. 2nd friends, to be healthy - physically, GRAPHICS/A~SISTANTTO THE EDITOR: edition. (2001). Alexandria, VA: American Sheryl R. Prater Physical Therapy Association. emotionally, mentally, socially, and spiritually. SPECIALTHANKS TO: Marge Torre Kanaan, N., & Sawaya, R. (2001). Nocturnal Annual subscription (US dollars only) leg cramps - clinically mysterious and pain- We offer three pages of USA $20 ful - but manageable. Geriatrics, 56, 34-42. Treatment Approach Options Canada, Mexico, & Overseas surface $25 Principles of Ambulatory Medicine. 4th edition. Overseas air $30 (1 995). Baltimore, MD: Williams & Wilkins, for dealing with stress, change, To subscribe, send check made payable 1255-1256. memories, etc. We did not to "GINI" (USD) or VISA, Mastercard, or Discover credit card number, expira- Riley, J.D., & Antony, S.J. (1 995). Leg cramps: include them because we think tion date, and name on card to the Differential diagnosis and management. post-polio problems are "all in above address. American Family Physician, 52, 1794-1798. your head." As many of you @Copyright 2003 by Gazette lntemational Yunus, M.B., & Aldag, J.C. (1 996). Restless know, we have committed the Networking lnstitute (GIN/) legs syndrome and leg cramps in Fibro- Permission to reprint portions must 6e myalgia syndrome: A controlled study. last two decades to combating obtained from the publisher. British Medical Journal, 31 2, 13 39. that incorrect message. Kyle Scott, CO, a certified braces, but now are experiencing fit into shoes easily as the plas- orthotist for over 15 years, has new weakness. 1 tic braces do? been confronted with the same Each group now has unique After joining Oregon Orthotic question from hundreds of polio needs, both physically and psy- System, the industy leader in survivors - "Where's the new chologically, and each polio sur- laminated orthotic braces in technology in orthotics?" vivor's needs must be addressed 1990, Scott realized that lami- "I find eveyone wants to see the I individually. I nation provided all the benefits newest gizmos, but really wants of M&L combined with all of and leather ("&L) braces " the benefits of thermoplastic. someone else to t y them, says were the primay orthotic treat- Scott. In his experience, polio ment in the early years. "My polio The Shadow Bracing System survivors fall into three main patients who wear M&L braces combines time-tested (M&L) groups: those who have have a lovebate relationship engineering, with today's cutting worn braces since contracting with them, " Scott reports. "They edge carbon-graphite lamina- polio; survivors who wore braces love the comfort, durability, and tion technology to keep it light- after the acute disease, but who positive structural weight. Stainless steel knee and learned compensation techniques but hate the excessive weight, ankle joints are standard, with to overcome their weaknesses bulk, and odor that is sometimes titanium ankle joints a popular and, in turn, discontinued wear- associated with the leather, and option. A standard long leg brace ing braces; and those who had the limited footwear choices, as with stainless steel components a less severe case of polio or the M&L braces have to be at- weighs between 2.75 and 3 those who had a full return to tached to the outside of the shoe." pounds, while a short leg brace function and never had to wear With the development of thermo- can weigh as little as a pound when titanium components plastics over the past 20 years, the orthotics and prosthetics are used. industry responded to these com- Oregon Orthotic System, based plaints with the next advancement in Albany, Oregon, knows no in orthotics. Thermoplastic braces bracing system can meet evey are lighter, less bulky, washable, need, but offers the The Shadow more appealing, and fit inside Bracing System as newer technol- shoes, so polio survivors can wear ogy that can address many of the different styles of shoes. concerns of polio survivors. . Scott continues, "However, experience has taught orthotists Give Oregon Orthotic System, Inc. that all thermoplastics have an a call at 800-866-7522 or 541 - elastic to them, so even 967-1821 to see if a laminated when the brace looked to be brace is for you and to find a structurally equal to M&L, the skilled orthotist in your area. plastic material couldn't duplicate the structural support of metal." RESOURCES Scott pondered his patients' The American Board for comments that they didn't feel Certification in Orthotics and their brace was as supportive, Prosthetics (ABC) sets standards would bend under their body for quality. Find a certified weight, and that their brace had orthotist in your area at www.abcop.org. a "rubbey feel. " What material Any trim configuration is possible as could be used that would be International Society for long as the brace is structurally sound. Prosthetics and Orthotics' aim Almost any color or skin tone can be as strong as is to promote high quality of care. reproduced and personalized fabrics but lightweight, less bulky, and Review their specific activities (SpandexTM)can also be laminated at www.ispo.ws. into the brace. 4 POLIO NETWORKNEWS . WINTER 2003, VOL. 19, NO. 1 The mechanically-actuated Association (www.aopanet.org) Stance Control Orthotic Knee" in the fall of last year, Horton joint is the latest innovation from Technology, Inc. unveiled an Horton Technology, a private electronic version of the Stance laboratory headquartered in Control Orthotic Knee" joint. Little Rock, Arkansas. Horton's Polio survivor Paul Ellis demon- strated how the Smart Knee", which can be powered for several days by ordinary AA batteries, enables him to walk safely up and down ramps despite knee muscle paralysis and weakness in both legs. Horton's elec- Stance Control KAFO tronic Smart Knee" is normal gait pattern and reduce currently the effort required for people undergoing Stance Control Orthotic KneeTMjoint with lower limb weakness and final clinical paralysis to walk. trials in the knee joints have been incorpo- United States rated into custom-made leg The mechanically-actuated ver- and will be braces and can prevent the knee sion has been commercially commercially from collapsing as polio sur- available since January 2002. available in vivors walk, automatically releas- More than 400 orthotists in early 2003. Smart KneeTM ing to permit unimpeded knee North America have successfully flexing during the swing phase completed the advanced train- ing course in the application of gait. Call Horton Technology at 866- of this innovative rehabilitation Preliminary scientific studies 663-3970 or visit their website technology. at www.stancecontrol,com for from the University of Central more information. Arkansas (UCA) suggest that At the annual meeting of the these braces provide a more American Orthotic & Prosthetic

Potpourri plans include the needs and COMPUTER/ELECTRONIC insights of people with disabilities ACCOMMODATIONPROGRAM (CAP) GUIDE FOR EMERGENCYPERSONNEL before, during, and after a crisis. CAP, established by the Depart- The National Organization on Dis- It is designed to help professionals ment of Defense (DoD), is the ability (NOD) has released the make the best use of budgets and federal government's centrally first edition of its "Guide on the resources as they strive to include funded accommodations program, Special Needs of People with Dis- all community members in emer- providing assistive technology abilities for Emergency Managers, gency preparedness. The guide solutions to the 53 federal agen- Planners, and Responders." The is relevant to diverse emergency cies that have joined the CAP guide is designed to acquaint situations, from fires to natural dis- initiative. The DoD pays the bill front-line emergency personnel asters to man-made catastrophes. to improve federal employment with specific issues that impact Emergency management profes- opportunities for people with people who have disabilities. sionals may request up to three disabilities in each agency. The 28-page guide highlights free copies from [email protected] For more information about the key disability concerns to emer- or 202-530-0727 fax. The guide CAP initiative, visit www.tricare. gency managers, planners, and can be downloaded at no charge osd. mil/cap/captec/captec. responders so their emergency from www.nod.org. Richard E. Hector, MD, FACS, Bradenton, Florida (www. DrHector.medem. corn)

Maintaining good ocular health necessary for the health of the The treatment is similar in most and comfort is a challenge even external surface of your eyes. If cases. Over-the-counter artificial under "ordinary" conditions. It the tear film is absent, the exter- tear solutions of various compo- is especially difficult when you nal surface breaks down, which sitions and thickness need to be use a pulmonary assist machine, can be very painful and can used. The frequency of applying such as C-PAP, BiPAP, etc., increase the risk of severe infec- these solutions depends on the with a face mask, because such tion, scarring, and loss of vision. severity of the dry eye condition. Avoid those that "take the red use can affect the stability of Using a pulmonary assist out" and look for a bland lubri- your tear film. A stable protec- machine with a face mask can cating product such as Refresh tive three-layer tear film is par- increase the rate of evaporation Tears/Gel or Thera Tears/Gel; tially responsible for good vision of your natural tear film, and Bion Tears or Tears Naturel Forte; and comfortable, healthy eyes. will, at first, stimulate your reflex Hypotears or Tears Naturel Free; We are most familiar with reflex tears, causing your eyes to tear Genteal Tears/Gel; and Refresh tears, those watery tears you inappropriately. If other condi- Endura. If artificial tears are need- experience while watching a tions are present that reduce the ed more than five times a day, sad movie or cutting onions. If production of this valuable tear preservative-free solutions should these reflex tears are present layer, an advanced dry eye con- be used. for no particular reason, the cul- dition can develop to the point prit is usually a dry eye condi- that your eyes will not tear or In very severe conditions of dry tion. This exists when the other, water at all. The use of hormone eye, the tear drainage system can more protective, and less familiar replacement therapy that includes be modified, either temporarily "tear" is absent, either due to estrogen, allergy medications such or permanently, by using small reduced production or increased as antihistamines and diuretics, plugs that fit inside the eyelids evaporation. and Rheumatoid arthritis and and/or the eyelids themselves can Parkinson's disease are all asso- be sutured partially closed to fur- Numerous small glands in your ciated with an advanced dry ther protect the surface of the eye eyelids produce the protective eye condition. from exposure and drying. three-layer tear film that is

below my knee. I turned to the According to my neurosurgeon, Internet to learn about post-polio overuse is not an issue; what I My polio story has a very typical syndrome. I was careful to refrain need to avoid until I have surgery beginning, but a very different from overuse, but noticed my is any jolting or bouncing moves, ending. As a child, I was diagnosed arms becoming weaker, too. or stretching. with polio and had two ortho- pedic surgeries on a "polio foot." Realizing that I might need to go How could I have been so mis- on Social Security Disability even- diagnosed? My mother was alone I was active, even a bit athletic, tually, I started doctoring to get during a polio epidemic of the in my 20s and 30s, but got lazy a diagnosis of post-polio onto early '50s and she had no trans- in my 40s. I noticed that my polio my medical records. Tests ruled portation to a hospital. I had leg was slightly weaker, but I out other problems until the MRI become very sick with a fever, so ignored the signs, planning to discovered lipomyelomeningocele, she called the hospital and nurses "get back into shape soon." a congenital neural tube defect told her to keep my legs in very At age 50, 1 finally decided to get related to spina bifida, correctable hot water. At age five, the doc- into shape, trying to bike and jog with surgery! I turned to the Inter- tors, looking at my "polio foot," short distances at first. It kept get- net again and discovered that it pronounced that it had indeed ting more difficult until I could causes orthopedic deformity just been polio. not raise my right leg sideways like mine - and just like polio. It - Doris, Oceanside, California at all! I had always assumed that took a few minutes to really sink [email protected] polio had affected me only in - I never had polio at all. A report from Rehabilitation Research and Training Center (RRTC) Health and Wellness Consortium at Oregon Health & Science University (www.healthwellness.org) WELLNESSAND DISABILITY "Nobody would be sitting here unless we accommodated what we're range from being able to enter a not able to do. We're not able to get up to this floor unless we build downtown bookstore or stay at stairs, and when we - society - put(s) out those efforts to sort of assist, a nice hotel to receiving financial then disability doesn't exist. " relief for the added cost of living with a disability, such as tax credits In this era of New Age ideas Our RRTC found that polio sur- for personal assistance services where organic food stores and vivors, as well as other people and equipment and improving yoga studios can be found in living with disabilities, face not insurance coverage for alternative busy street corners and in office only the health and wellness medicine, specialists, and assis- buildings, there seems to be a issues that everyone faces but tive technology. focus on health and wellness. also some unique challenges Like most people, the persons Our Rehabilitation Research that fluctuate based on individual in the study noted a desire to feel and Training Center on Health abilities and the societal structure like they are valued and support- and Wellness Consortium at around them. One participant ed by family, friends, and health Oregon Health & Science Univer- stated, "...you still have to cope care providers. sity is studying what health with health and wellness issues and wellness means to people that you would if you're able- Our RRTC on Health and Well- with disabilities. bodied. I still have periodontal ness recommends several strate- gies for meeting the health and We have found that for people disease. I still have a heart prob- lem . .. and (it's) in conjunction wellness needs of polio survivors, with disabilities, health and well- as well as many other people liv- ness presents a compounded with other problems that are normally associated with spinal ing with disabilities. They include challenge. When asked to define providing access to public facili- health and wellness, people in cord injury, you know, pain, infection, ability to do things. " ties, expanding the definition of our study, all of whom are living health for persons with disabilities, with long-term disabilities such The participants identified per- creating materials that would as cerebral palsy, post-polio, sonal attitudes and overall mental educate people with disabilities multiple sclerosis, amputation, outlook as one of the key factors on how to maintain a healthy and spinal cord injury, noted that deeply affects overall quality lifestyle, and providing training that it meant several things. of health. Another individual to health care providers about Health and wellness means being noted, "I think it (having a dis- how to meet the needs of people able to function and being given ability) does affect your self- with disabilities. image. It almost always starts the chance to do what one wants By taking these first steps, society to do; being independent; hav- out to be a negative experience. But, I think it can evolve into can move forward in meeting the ing self-determination regarding needs of all of its members. choices, opportunities, and something that you're proud of activities; having physical and - proud of your ability. " They emotional states of well-being; also identified coping strategies, POST-POLIODIRECTORY-2003 and not being held back by pain. interacting with others with dis- will be available after March 1, abilities, participating in physical 2003. The Directory lists com- When asked about wellness, activity and exercise: working prehensive clinics, -knowledge- one participant stated, "At the for pay or volunteering, and able health professionals, and end of the day, if I feel like achieving personal goals as ways support groups and is available I've accomplished something to promote and maintain per- online at www. post-polio.org/ and been able to meet - not sonal wellness. ipn/locate.html. necessarily set goals - but I Peonle1- in the- stud"- - - , also - - - stressed------I Print copies are available for things 1 felt were important $8.00 USD from International to accomplish, then Ifeel like that community support and societal attitudes were vital to Polio Network. Individuals who I had a well day. " their health and wellness. These have prepaid will receive their society-based, external factors copies soon after March 1st. To The GIN Laurie Endowment Our Appreciation frwn Support Greupr *** Delaware Valley PdiSurvivors (New Bm~n, Numerous individuals support our mission to enhance Pennsylvania) the lives and independence of polio survivors and home In marnary of Shidey UnMi mechanical ventilator users by promoting education, Nebraska Polk Suwhm Association networking, and advocacy among these individuals and (Omaha, Nebraska) health care providers. PdiSurvivors Association (bumey8Uitomia) Many choose to recognize important people, past and PdiSunrivon Foundation (Reseda, California) present, in their lives. Those honored individuals are Polio Survivon of Stark County (HarlviUe, Ohio) listed below. In memory of MavMnne Weis Post-Pd'i Resou~eCroup of butheastern Wisconsin To The GIN1 Laurie Endowment in memory of ... (Milwaukee, W~sconsin) Eugene Bieniek The Polio Connection (CuKinnati, Ohio) Bud Blitzer Robert V. Lohse Kayleen Brereton Thomas S. Marshall Jr. Helen Cason Robert McCown To The GIN1 Research Fund in memory of ... Janet McMahon Andrew H. Chudy, Jr. Clarence Astling Dr. Henri Powers Minette Barbara Young Connelly Mary Lou Burkhart Elizabeth & Hugh Jeffery Esther Nyberg Dr. Wayne Crocket Mickie Cammerer Bertha Kossman Margaret Pfrommer Virgil Croegaert Andrew H. Chudy, Jr. William A. Lang Iris Hanners Rockhold Ruey Darrow Pat Clark Gini Laurie Patricia Rogers Justin Dart Barbara Young Connelly Lester Bolton Leonard, Jr. Thomas Wallace Rogers Charles & Bernice Detrick Jane Crane Anne M. Littlefield John Scalise Edna Carstens Elterich Stephen F. Dean Sr. Thomas S. Marshall Jr. Douglas Schultz Caroline & Fred Evans Carroll Dwyer, Sr. Dr. Henri P. Minette Renah Shnaider Catherine Francoeur Edie Elterich Harold "Doc" Pike Doratha Smith Doris Frost Gay Arlene Hooker Fay Dorothy Reed Mrs. Cecila St. Germain Jack Genskow Tom Ferguson Russell Eugene Rogers Elizabeth Stafford A. Eugene Harris Sylvia Fleming Thomas Wallace Rogers Walter Stewart Harold Heath Bill Frank Emmi Saxer Ruby Wagner Jackie E. Hightower Doris Frost Gay Leonard Schruben Marianne Weiss Janet Hoffman John Green Douglas Schultz Dan Williams Mr. & Mrs. Kieran Kelly John G. Griffin Gloria Beatrice Smith Rose A. Wirtz Donald V. Knepp Kathy Gustafson Lawrence William Trotter Mildred Zielinskli William A. Lang Ethel Haft Max Weinstein Lee Zola Gini Laurie J. Kaye Harding Marianne Weiss Mark Gwen Lightfoot Harold Horsley

To The ClNl Laurie Endowment in honor of ... To The ClNl Research Fund in honor of ... The Bieniek Family Humanity All polio survivors Frederick M. Maynard, MD Linda Bieniek The Jeffreys Milan "Doc" Barto Mrs. Donald (Pat) Miller Richard Bruno, PhD Judy Johnsen Linda Bieniek Linda Nyhart Jean Fox Csaposs Aili Leppanen Richard Bruno, PhD Philip Perrine Gary Dean Donald Peck Leslie, MD James DePreist Jacqueline Perry, MD Marny K. Eulberg, MD Sparkie Lujan Nancy Frick, MDiv, LhD D. Virginia Roberts Daniel Ezydorski Sally Parriott Phyllis Cayman Gene Santeusanio Judith Raymond Fischer Padma Hiranandani Kay Gilley Ed & Karen Slawin Nancy Frick, MDiv, LhD Reichwald Faye Greenwood Beverly Smith The Gacek Family Marge Schleisinger Paul Harber Bill Standrich Mr. & Mrs. Tom Gregg, Jr. Linda K. St. Germain Nancy Heiskell Jean Stephens Jim and Judy Headley The St. John Family Carolyn Jones Lynne Billiard Warnke Joan Headley Judy Whitehead Sister Ann Martin Klee Emily Wegusen Linda Hilton Sally Williamson Roseanne Lasater Sally Williamson Anne Horvath Donald Peck Leslie, MD EDITOR'SNOTE: In the last newsletter, we concluded our series of four articles about polio memories and we have placed them online (www.post-polio.org/ipn/pnnl8-4B.htmHfin). We also posted on the Internet, the extensive chart - Treatment Approach Options - compiled by one of the authors, Linda L, Bieniek, CEAP. Because the response to the chart was so positive, we decid- ed to publish it for all of our readers. Our goal is not only to explore the problems polio survivors are facing, but also to provide solutions. Our hope is that within these pages you will find interesting and compatible options to explore.

O Copyright 2002 Gazette International Networking Institute

Relaxation Improves energy, Focusing, breathing, ... respond well to structure; want Audio/videotapes, Research-based health Techniques sleep, breathing, stretching, imaging. to increase their physical energy, books, classes at benefits. Can do alone circulation; feel calm, or reduce their pain; medical, community, or with others. -Progressive Muscle reduces pain. are busy, have active minds, or & wellness centers -Diaphragmatic Breathing are sensitive to feelings of others. Journaling Clarifies thinking; Writing about ... like to write or read; are list-makers; Books, workshops, Private, can do alone helps to solve thoughts, feelings, are shy, reserved, imaginative, specialty journals or in groups. Person problems & desires, needs, & perceptive, or dreamers; need www.tcm.com/hr-books/ controls depth of make decisions. experiences. private time to sort out decisions. journaling.htm subject matter. Cameron: The Artist's Way Biofeedback Reduces pain; Focusing, breathing, ... need structure; are good at http://aapb.org Research-based. improves breathing, & visualizing, following instructions; prefer www.aabt.org Offered at rehab heart rate, blood monitoring changes concrete & logical approaches; Assn for Applied & pain centers. pressure. with machine. or who like technology & Psychophysiology Covered by some visual results. & Biofeedback health insurance (303-422-8436) policies. HeartMath Improves blood Breathing, visualizing, ... are active or need immediate relief; www.heartmath.com Research-based. pressure, heart rate, shifting focus; seek structured approaches to increase (800-450-911 1) Used in hospitals cholesterol levels. monitoring progress their energy or reduce stress-related Books, workshops, & corporations. with computer. medical problems. training, & computer programs Childre & Martin: The HeartMath Solution

-- Guided Imagery Strengthens immune Visualizing while ... are visually-oriented; enjoy movies www.nancyjnapier.com Research: effective system; reduces listening to music & plays; are energized by nature; www.healthjourneys.com/ for immune-related tension, pain; or narration; dream or are imaginative; want to guidedimagery.asp conditions. Useful for improves respiration interpreting images. develop their intuition. www.healthyroads.com/gi stress, decision-making, & heart rates. (8 77-3 30-2746) health.

Dialectical Regulates emotions; Training in mindfulness ... have had difficulty being in www.phoenixinflight. Research-based results. Behavior Therapy reduces distress & & interpersonal therapy or with interpersonal homestead.com/ Useful approaches & (DBT) therapy-interfering effectiveness skills. relationships; are judgmental Linehan.html skills for traits that behaviors. Increases or emotionally reactive; need www. priory.com/ interfere with develop- Created by self-responsibility, structure. dbt.htm (Professional) ing & maintaining Marsha Linehan, PhD relationship skills. healthy relationships. Hypnotherapy Shifts beliefs & Exploring sensory images ... have difficulty making changes; www.stephengilligan.com Post-polio research: perceptions; identifies & affirming language; value humor, lightheartedness, & www.erickson- useful results. Clinician options; builds self- using symbolic language playfulness; are sensual or sensitive foundation.org needs to be well-trained esteem & resources to engage client; to external environments. www.hypnosiscanada.com & integrate into to take action & make focusing on intentions Caution: Useful for trauma work ONLY therapy. positive changes. & positive outcomes. when client knows how to pace the work, contain overwhelming feelings, & stay grounded in reality. Neuro-Linguistic Identifies goals & Using sensory ... want to achieve results & learn Books, tapes, training Very useful. Does not Programming strategies; improves observations, language, how to improve their work programs probe deep feelings; (NLP) communications, cognitive-behavioral & performance, health, & relationships; www.nlpanchorpoint.com not a "quick fix" for learning, performance, hypnotherapy techniques. teaching, training, & interpersonal (800-544-6480) trauma issues. resourcefulness. effectiveness. OIConnor: Introducing NIP O Copyright 2002 Gazette International Networking Institute

SOLUTION-FOCUSED THERAPIES,CONT. BENEFITS METHOD GOODFOR PEOPLEWHO ... RESOURCES COMMENTS ------Cognitive- Helps in shifting Identifying aspects of ... are "thinkers" and "doers"; tend to Workbooks, workshops, Focuses on thinking, Behavioral negative thoughts, problems; challenging see the world in opposites; are cynical counseling social interactions, & Therapy limiting beliefs, & negative thinking; & critical or stuck in problematic National Assn of behaviors. Limited in unhealthy coping creating action plans; behavior patterns; want to focus Cognitive Behavioral affecting deep feelings; behaviors. offering problem- on present-day issues; are emotionally Therapy useful with other solving skills. reactive. http://iacp.asu.edu/ approaches. links.htm

Relational Therapy Improves self-esteem, Discussing issues; ... are coupleslpartners with Books, workshops, Learn skills & communication, & strengthening awareness interpersonal conflicts or sexuality videolaudiotapes insight for health, relationship skills; of self & others; setting problems; are individuals seeking a www.mastersandjohnson. self-esteem, & reduces interpersonal goals; learning skills; life partner or greater satisfaction com relationships. Affects conflicts, loneliness. resolving conflicting with their relationships; are willing www.imagotherapy.com medical, disability, needs. to learn about themselves & others. www.aamft.org or trauma issues. Psychodynamic Develops insight Exploring needs, desires. ... are curious and want to make www.mental-health- Important to improve Therapy into behaviors & Discussing ~nconscio~s positive changes; are insightful or matters.com/ relationships & decisions; resolves motivations & impact sensitive to others' reactions; are treatments/ satisfaction with life. inner conflicts; of family of origin issues "thinkers" and "doers" wanting to trt_detail~.php?trtlD=54 Useful for understanding builds self-esteem; on present-day situation; strengthen their ability to be intimate; attitudes. improves relation- discovering healthy have difficulty expressing feelings ships & health. coping options. and ideas; value relationships.

Dance & Releases feelings Expressing spontaneous ... value dance or music; are www.adta.org Research: very effective Movement & physical tension; physical movement with affected by sounds; busy "doers" (USA/lnternational) for people with trauma, Therapy improves body or without sound; who do not pay attention to their Levy: Dance Movement medical, or disability awareness & self- connecting to body; bodies or their feelings; individuals Therapy: A Healing Art issues. Can be done esteem; empowers reflecting on, discussing, who tend to be compulsive or Needham-Constonis: in a sitting or lying client, increases & learning from obsessive; those who want to Therapy in Motion position; client can energy, playfulness. experiences. have fun; have difficulty expressing Chodorow: Dance use imagination. feelings. Therapy & Depth Psychology Art Therapy Improves self- Using art materials; ... learn visually and tactilely; www.arttherapyincanada.ca Research: increases awareness, cognitive creating spontaneous enjoy working with their hands Malchiodi: The Art self-esteem; useful for abilities, intuition, expressions; interpreting or concrete objects; value art, Therapy Sourcebook people with health safe expression of meaning from visual spontaneity, & playfulness; have Allen: Art is a Way problems, disabilities, emotions. images. difficulty expressing feelings. of Knowing or trauma. Music Therapy Shifts moods; reduces Using sounds to evoke ... enjoy or find sounds stimulating, www.musictherapy.org Research: good results; tension; improves feelings, soothe, uplifting, or comforting; are private, Bruscia: Defining Music useful for people with heart rate, breathing, support, & comfort. reserved, shy, or outgoing & active; Therapy medical, disability, releases endorphins. need control over their environment Caynor: The Healing or trauma issues. & support in releasing feelings. Power of Sound Personality-Focused Identify & resolve Journaling, drawing, ... are expressive; value plays, movies, [email protected] Parts exercises reveal conflicting needs; or dialoguing about books, character development; are www.selfleadership.org/ positive reasons for -Gestalt strengthens self: personality private about their feelings; are very ifsmodel.htm unhealthy traits. -Parts Work awareness, characteristics. busy or over-committed; have strong, Stone & Stone: Valuable alternative -Internal Family acceptance, decision- forceful personalities; are sensitive Embracing Our Selves: to worrying & Systems (IFS) making, & ability to or creative; have conflicting priorities The Voice Dialogue obsessing. take action. or needs; want to understand reasons Cappacchione: for unhealthy coping behaviors. Healing the Inner Child & The Well-Beingjournal Schwartz: Internal Family Sys tems Therapy

10 Pouo NETWORKNEWS WINTER2003, VOL. 19, NO. 1 0 Copyright 2002 Gazette International Networking Institute

GOODFOR PEOPLEWHO ... RESOURCES Focusing Gain awareness of Noticing & interpreting ... want to develop their intuition; Gendlin: Focusing Extremely useful intuition & body's sensations, feelings, need to respect their health Gendlin: Focusing- self-awareness Developed by messages. thoughts, & dreams. conditions; discount their physical Oriented Psychotherapy skills. Serves E. Gendlin, PhD or emotional needs; have difficulty www.focusing.org many purposes. making decisions; are unaware of (845-362-5222) their feelinqs. EMDR: Identifies & resolves Visualizing images & ... have problems stemming from one www.emdria.org Research: useful for Eye Movement anxieties, phobias, moving eyes; expressing incident; have a history of trauma & www.emdr.com trauma issues. Health Desensitization distress, traumatic feelings; discussing have a trusting relationship with an Shapiro: EMDR: The cautions with certain and Reprocessing memories in meaning. ethical, well-trained therapist; know Breakthrough Therapy cardiac, respiratory, contained way. how to use grounding, pacing, for Overcoming Anxiety, or neurological Originated by & containment skills. Stress, and Trauma conditions. Francine Shapiro, PhD Parnell: Transforming Trauma: EMDR Energy Therapies Reduces distress, Using fingers to tap or ... need immediate relief from www.tftrx.com Clinician needs high anxiety, phobias, press Chinese medicine distress; are open to exploring www.energypsycho.org level of experience to Emotional Freedom physical tension; points on the body; different approaches & have http://emotionalrelief.org integrate with content. Technique (EFT) improves cognitive stating positive a trusting relationship with www,meridianpsych.com/ Can be adapted without or functioning, intentions; measuring well-trained, ethical therapists. methods.htm tapping for clients who Thought Field stabilizes emotions. distress levels. Gallo: Energy Psychology cannot use their hands. Therapy (TFT) in Psychotherapy Somatic Trauma Reduces highly Employing body ... have endured traumas, www.traumahealing.com Harvard University Therapy aroused "fight, awareness, expression surgeries, accidents, medical w.fsu.edu/-trauma/ research finds effective flight, & freezing" of feelings, use of complications, or diseases; are unaware v6i3a3.html for treating trauma. impulses to trauma images. of body sensations; want to reduce www.nwc.net/personal/ Clinicians must be triggers. the distress of physical symptomslpain; babette/somatic.htm well-trained & support need to release blocked feelings. Rothschild: The Body client before & after Remembers processing.

Trauma Resolution Stabilizes & Assessing effects & ... have a history of intense or w.trauma-pages.com High quality programs Programs strengthens client's triggers of traumas; ongoing neglect or abuse; are www.sidran.org/ are extremely valuable. ability to function; developing healthy at risk medically; are potentially traumabr.html Clinicians need to be Affiliated with provides structure, coping skills; creating harmful to self or others; are www.issd.org (Internat'l) well-trained, ethical, behavioral health expertise to resolve plans to prevent unable to function adequately or www.estss.org (Europe) & able to understand or major medical unhealthy responses relapses; using multiple to process traumas in outpatient www.isst.org (Internat'l) how emotional & centers or universities. to traumas; builds treatment approaches. setting; are highly emotional or www.mastersandjohnson. psychological traumas Available in some responsibility. have difficulties expressing com can get replayed nations. emotions safely. http://traumacenter.org in treatment. www.rossinst.com Chemical Stabilize & manage Teach skills to intervene; ... use alcohol, medication, or illegal http://helping.apa.org/ Quality of program, Dependency client's compulsive learn about underlying drugs to numb their feelings; depend therapy/alcohol.html staff's boundaries, Programs behavior; increase needs & how to respond on substances to function, relax, sleep; (Professional) & training critical to self-awareness & to emotions. or cannot function or react harmfully prevent emotional healthy coping skills. because of usage. trauma to client. Chemical Relieve emotional pain Using drugs prescribed ... have difficulty sleeping, eating, www.mental-health- Avoid addictive Interventions & cognitive distress; by MDIDOs; taking remembering, concentrating, matters.com/ medications & using improve mood, medication to stimulate managing emotions, or lacking medication/index.php them to mask feelings. functioning, sleep, & balance the brain's energy, and/or feeling hopeless for Post-polio research appetite; increases chemistry, replenishing extended period of time; whose showed that polio physical & mental its neuro-transmitters anxiety, depression, or dissociation survivors with energy ST emotional depleted from trauma interferes with daily functioning or depressive symptoms resilience; reduces or accumulated stress. responsibilities; or whose mood were under-diagnosed pain, obsessiveness, changes frequently and/or rapidly. & under-treated for & emotional reactivity. depression. APRIL 26-27 - 13th Annual New Jersey Polio Fear of falling in older adults has been an area of interest Network Conference, Lafayette Yard Marriott for Kristine Legters, PT, DSc, NCS, for several years Hotel, Trenton, New Jersey. Featuring John R. and is reflected in a review she wrote in the March 2002 Bach, MD, and a selection of workshops. Contact Physical Therapy Journal (Vol. 82, No. 3, pp. 264- Nj Polio Network, P.O. Box 537, Martinsville, NJ 272) titled "Fear of Falling." 08836 (201 -845-6860, [email protected], Under her direction, a group of physical therapy students http://community.nj.com/cc/NJPNPolio). at Gannon University in Erie, Pennsylvania, is doing a MAY 16-17 - Third Post-Polio Conference: study on the fear of falling and health-related quality of You Can Choose How You Feel, Embassy life (HRQOL) as they relate to post-polio syndrome. Suites, Greensboro, North Carolina. Featuring The fear of falling has not been researched before in Julie K. Silver, MD. Contact Triad Post-Polio polio survivors. The goal of the study is to provide valu- Support Croup, 600 Savannah Street, Greensboro, able information to health care professionals to help NC 27406 (336-373-11 22, [email protected]). decrease the fear of falling and to improve treatment AUGUST 22-23 - Michigan Polio Network's options for polio survivors. 18th Annual Conference, Best Western Midway The survey that will take less than 15 minutes to com- Hotel, Lansing, Michigan. For polio survivors and plete and will be administered via email through the caregivers; a special caregiver segment will be Gannon University website or through the mail. All offered. For registration forms or further informa- responses will be strictly confidential. The results of the tion, call 31 3-885-7855. study will be available to all participants either by email OCTOBER 23-26 - Ninth International or mail. Conference on Home Ventilation. To participate in this study, contact Kristine Legters, "Noninvasive Ventilation: From the ICU to PT, DSc, NCS, at Gannon University, 109 University Home." Caribe Royale Resort Suites, Orlando, Square, PAC 3023, Erie, PA 16541 or Florida. Contact IVUN (31 4-534-0475, www.post- legters00 1@mail 1 .gannon.edu. polio.org/ivun) OR the American College of Chest Physicians (847-498-1400, ww.chestnut.org).

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