REHABILITATION GAZETTE IVOL. 35, NO. 2

Washington, DC 20036, (800/ Agricultural Engineering Building, READING 544-3284, 202/939-9320); free. West Lafayette, IN 47907-1146, A Summer Plague - Polio and Directory of National Informa- (800/825-4264). Its Survivors (ISBN 0-300-06292- tion Sources on Disability (NIS); When Billy Broke His Head ... 3) by Tony Gould; Yale University National Rehabilitation Information and Other Tales of Wonder, by Press; 384 pages; $30. Available in Center (NARIC), 8455 Colesville Billy Golfus and David Simpson is an bookstores in the USA in August Rd., Suite 935, Silver Spring, MD excellent documentary about Billy 1995, Watch Polio Network News 20910, (800/346-2742), Golfus, a journalist, disc jockey, and for excerpts and further information. [email protected](E-mail); $15. writer living with a disability after The Post-Polio Syndrome: 1995 Disability Law Products head injury following a traffic acci- Advances in the Pathogenesis and Services Catalog; Commis- dent. He gives a first person account and Treatment edited by Marinos sion on Mental and Physical Dis- and visits other individuals with dis- abilities. This Sundance Festival C. Dalakas, Harry Bartfeld, and ability Law, American Bar Associa- award winner was broadcast on Leonard T. Kurland; proceedings of tion, 1800 M St., NW, Washington, the New York Academy of Sciences DC 20036; catalog free. many PBS stations on Tuesday, May meeting (Bethesda, Maryland, April, 23rd. Many stations will show it at 1994); (800/843-6927, Ext. 341 Independent Living Skills another time. Check your local list- or 342); 412 pages; $100US plus Curricula (complete resources for ings. When Billy Broke His Head ... shipping fee. skill training needs of people with is distributed by Fanlight Produc- disabilities); Access Living, 310 S. tions, 47 Halifax St., Boston, MA Home Mechanical Ventilation; Peoria, Suite 201, Chicago, IL 02130,800/937-4113; purchase proceedings from Fourth Interna- 60607, (312/226-5900~,1687 price $245, rental $50/day, S&H $9. tional Conference on Home Mecha- TDD, 2030 FAX); 25 workshop nical Ventilation (Lyon, France, modules; $100 plus $9 postage. 1993);Amette Blackwell, Departe- PHONE ment Librairie, 2 rue Casimir Turtle Books is a series of 11 books, each telling a story about Several ADA materials are available Delavigne, 75006 Paris, France, in Spanish - 800/949-4232. (+33 1.43.26.09.60); 384 pages; a young child with a disability; $65US. language age 3-7 years; Jason and National Information Clearing- Nordic Publishers, P.O. Box 441, house for Infants with Disabili- Alternative Medicine: Expand- Hollidaysburg, PA 16648, ties and Life-Threatening ing Medical Horizons; compre- (814/696-2920,814/696-4250 Conditions (joint program of hensive report to the National FAX); $9.95 each pbk, $13.95 hbk. Center for Developmental Disabili- Institutes of Health (NIH) from the ties at the University of South alternative medicine community; Carolina, Columbia, and The Superintendent of Documents, Association for Care of Children's P.O. Box 371954, Pitts-burgh, PA Sprintrnothhammer has produced Health, Bethesda, Maryland) - 15250-7954, (202/512-1800 or a video in their Wellness in the 800/922-9234 ext. 201. FAX 202/512-2250); cite stock '90s series for polio survivors. The number 017-040-00537-7; 420 aquatic therapy video was written In Touch With Kids (ITWK) is a pages; $25, $31.25 international. and demonstrated with the assis- network for kids (age 1-18) with tance of Robbie Leonard, PT, at spinal cord injury to keep in touch New Directions in Supported through phone calls and letters. Employment edited by Paul Roosevelt Warm Springs Institute for Rehabili-tation. The video presents Contact: National Spinal Cord Injury Wehman and John Kregel; VA Association, 545 Concord Ave., Commonwealth University Rehabili- options which survivors and thera- pists can use to individualize a pro- Suite 29, Cambridge, MA 02138, tation Research and Training Center 617/441-8500,617/441-3449 FAX. on Supported Employment, 1314 gram. The video costs $29.99 plus West Main St., P.O. Box 842011, shipping. To order call (800/235- The National Information Richmond, VA 23284-2011 2 156) or write Sprintrnothhammer, System for Vietnam Veterans (804/828-185 1);manual or cas- P.O. Box 5579, Santa Maria, CA and Their Families - 800/922- sette; $12.95, Canadian residents 94456. 9234 ext. 402. add $2.50. Farming with an Upper To receive a free copy of Save Getting Ready for College: Extremity Impairment and Food Dollars and Help Your Advising Students with Learn- Improving Farmstead Accessi- Heart contact The American Heart ing Disabilities and 1995 bility are both available from Association, 800-HAUSA1. Financial Aid for Students with Breaking New Ground Resource Disabilities; HEATH Resource Center, Purdue University, 1146 Center, 1 Dupont Circle, Suite 800, FOR YOUR HEALTH

Cardiovascular disease is the most common cause of death in the United States. A high proportion of the deaths could be prevented by reducing important risk factors for heart disease. Three important contribu- tors are physical inactivity, high-fat diet, and smoking. * Cigarettes kill 419,000 Ameri- * Smoking reduces the amount of smoke. WHO currently estimates cans each year - more than alco- oxygen to the heart muscle while that there are 1.1billion worldwide hol, heroin, crack, automobile and simultaneously making the heart who are cigarette smokers. airplane accidents, murders, suicides, beat faster (increasing its demand * In the 25 years between 1955 and AIDS combined. Most of these for oxygen). and 1990, the percentage of deaths result not from cancer, but * Smoking is the main cause of American adults who smoke has from heart attacks. chronic lung diseases. SEECOPD declined from 42.3% to 25.4%. * Cigarette smoking is the number BELOW. * Over the past decade, there has one cause of cancer death in men. * Many studies show that second- been no significant decrease in Lung cancer surpassed breast cancer hand smoke can have harmful smoking rates among youths in the as the leading cause of cancer deaths effects on non-smokers. Sidestream U.S., but higher tobacco taxes in among women in 1987. smoke - smoke in the air from California have led to a drop in ciga- * Nicotine in smoke increases blood burning tobacco - actually has higher rette smoking; and in Canada, high- pressure, heart rate, the amount concentration of some harmful com- er taxes have led to a decrease in of blood pumped by the heart, and pounds than mainstream smoke. smoking of almost 2/3rds since 1980. the blood flow in the arteries of * Smoking costs the U.S. $65 the heart. billion per year in health-care costs * When cigarette smoking ceases 6 Smoking is a major risk factor of and lost productivity - that's $262 the likelihood of developing cardio- peripheral vascular disease - the per American per year. vascular disease declines rapidly. narrowing of the blood vessels that Risk is reduced within one year, and * In the U.S., 1.5 million people after ten years the risk is essentially carry blood to the leg and arm quit smoking each year, but as many muscles. that of a nonsmoker for a person as 50 million adults continue to who smoked a pack a day or less. \

STOPSMOKING RESOURCES Calling It Quits, Smoking and Heart Disease, How to Avoid Weight Gain when Quitting Smoking, Cigarette Smoking and Cardiovascular Disease. Free from the American Heart Association, National Center, 7272 Greenville Ave., Dallas, TX 75231-4596, 800/242-8721, or your local American Heart Association. Freedom From Smokingo For You and Your Family; Freedom From Smokingo For You and Your Baby; A Lifetime of Freedom From Smokingo, and In Controlo: A Video Freedom From Smokingo Program. For price information contact your local American Lung Association. If You Smoke ... Stop for Good. Free from the American Medical Association, 515 N. State St., Chicago, IL 60610, or its co-sponsor Marion-Merrell Dow, Inc., 800/362-7466.

-- RESOURCESFOR CoPD Pulmonary Education and Research Foundation (PERF), P.O. Box 1133, Lomita, CA 90717-5133 (310/539-2295) has published three booklets on Essentials of Pulmonary Rehabilitation. Part I introduces the basic methods of pulmonary rehabilitation and methods of treatment. Part II focuses on medications and quality of life issues. Part I11 specifically addresses the future for patients with chronic lung disease. Single copies of each are available without charge. PERF also has produced two videos on Pulmonary Rehabilitation; one for physicians and one for lay people. Single copies of each are available without charge. Questions about lung disease? Call LUNG LINE", 800/222-LUNG. Callers within Colorado dial 303/355-LUNG. LUNG LINE" nurses are available Monday through Friday, 8:00 a.m. to 5:00 p.m. Rocky Mountain time. LUNG FACTSW, 800/552-LUNG, is an automated information service available i 24 hours a day, seven days a week. LUNG LINE' and LUNG FACTSW are services of National Jewish Center for Immunology and Respiratory Medicine, Denver, CO. To receive a patient education materials list call 800/423-8891, ext. 1079 or 7700. REHABILITATION GAZETTE IVOL. 35, NO. 2 For the Traueler

The Channel Tunnel, linking the Canada's National Transportation . for the Disabled, $19.95 plus IJnited Kingdom and France, is now Agency has published three guides: $3.00 S&H; Travel for the operating. For accessibility informa- Improving Access for Travellers Disabled (AHandbook of Travel tion contact European Passenger with Disabilities; Air Travel Acces- Resources and 500 Worldwide Services (EPS), EPS House, Waterloo sibility Regulations; Complaint Access Guides) $19.95 plus $3.00 Station, London SE1 8SE, United Guide for Removing Undue S&H; Wheelchair Vagabond, Kingdom (44 71 922 4499). Obstacles to the Mobility of $14.95 plus $3.00 S&H. UK Care Ltd, The Old Mission Hall, Travel-lers with Disability. The 1995-1996 Wilderness Contact: Accessible Transportation Chipping, Herts SG9 OPQ (44 Inquiry Schedule is available. Directorate, National Transportation 01763 273933, FAX 44 01763 Contact: Wilderness Inquiry, 1313 273934) is a rental company supply- Agency of Canada, Ottawa, Ontario 5th St., SE, Box 84, Minneapolis, ing various types of wheelchairs, KIA ON9, Canada, (800/883-1813 MN 55414, (800/728-0719 or battery and self-propelled, and three- or 819/997-6828). 612/379-3858). and four-wheel scooters for individu- Accessing Sydney is a 300-page Airport Rent-A-Car at McCarran als vacationing in England. access guide to Sydney, Australia. International Airport, Las Vegas, Ireland's National Rehabilitation Phone 02-977-8653 or FAX 02- offers wheelchair accessible vans. Board supplies information on 977-8238 or write DEB Services, For more information contact accommodations and amenities for P.O. Box 315, Manly, New South 800/785-8578 or 702/795-0800. people with disabilities. Four guides Wales 2095, Australia for interna- tional prices and to order. Access for Travel, Consultation are available: Guide to Accessible and Training, Carol Lee Power, Accommodations in Ireland; Access Brisbane is available from 1429 10th St., W, Kirkland, WA Accessibility Survey of Tourist Disability Services Section, Brisbane 98033, (206/828-4220). Amenities in Ireland; Accessible City Council, GPO Box 1434 Survey of RestaurantyPubs; Brisbane 400 1, Queensland, The Travelin' Talk Network, Dublin -A Guide for People with Australia (07 225 4416). 130 Hillcrest Plaza, Suite 102, Disabilities. Contact: NRB, 25 P.O. Box 3534, Clarksville, TN Disability Bookshop, Twin Peaks 37043, (615/552-6670 or FAX Clyde Road, Dublin 4, Ireland Press, P.O. Box 129, Vancouver, '01 661 4181). 615/552-1182), has a Membership WA 98666, (800/637-2256, Benefits Program which includes Israel's Ministy of Tourism's 800 360/694-2462 or FAX 360/696- discounts at participating facilities number for inquiries on travel to and 32lo), has published several guides including Red Roof Inn, Days Inn within Israel, is 800/596-1199 or of interest. Directory of Accessible and Hotels, Howard Johnsons and FAX 212/629-4368. Van Rentals, $9.95 plus $3.00 Ramada, etc. W S&H; Directory of Travel Agencies

New PBS Documentary on children came down with a cold, along with PHOTOCOPIES of any Polio: Filmmakers Want Stories and Birthday Balls, the National visual materials be sent to research The Center for History in the Media, Foundation for Infantile Paralysis assistant Roger Munter, The Center associated with The George (March of Dimes), and poster chil- for Histoy in the Media, The Washington University in Washing- dren created national headlines. George Washington University, ton, DC, is currently working on This film will be a study of how Rome Hall 407, Washington, DC an hour-long documenta y on the American society responded to 20052. American experience of the polio polio, and how fear acted as a cata- epidemics of the early and mid-20th lyst for public action. century. A Paralyzing Fear: Jackie Ellerbrock, Continental, Ohio, Polio in America is scheduled Memories are important to this pro- has started a family information and to be shown on PBS in the fall of duction. The makers are looking for resource center for parents and chil- 1997. Producer Nina Seavey and personal stories, and specifically dren with special needs. Information her crew are in the scripting process visual memorabilia - personal pho- is sometimes hard for families to -ight now, and are looking for stories tos or home movies, letters, posters, obtain in this rural area. Send any 'and artifacts which will help them scrapbooks - which will help cap- information free of charge to Family recreate an America where town ture the national experience of polio. Outreach, P.O. Box 497, swimming pools were closed, par- The makers request that a letter Continental, OH 45831. ents' hearts stood still when their describing some potent memories, REHABILITATION GAZETTE IVOL. 35, NO. 2

For individuals with disabilities inter- as a manager and entrepreneur. After that I had no experience in, I had no ested in self-employment, there has careful review of a Fox's Pizza Den fran- business contacts to rely on and seemed, been a lack of resources to obtain the chise that was for sale, I decided to to be spinning my wheels at times. In support and assistance necessary to finance the purchase with a loan backed Februay of 1995, I was introduced to become entrepreneurs. by my residence to avoid the high inter- Pittsburgh Blind Association's BEV pro- est rates of a bank." Steven Hanulik, gram. This has proven to be an invalu- One entrepreneur program, The Owner, Fox's Pizza Den franchise. able resource." Tim Knoebel, Owner, Business Enterprise Venture (BEV) in QuadCepts. Pittsburgh, Pennsylvania, was estab- Tim Knoebel has created several lished by the Pittsburgh Blind Associa- ideas for new assistive devices and Currently, Tim and BEV staff are writ- tion in October, 1994 to serve indi- has utilized the program to assist with ing a "prototype grant," which will viduals with a variety of disabilities, patent efforts. supply Tim with the necessary funds including vision impairment, quadri- "In July 1991, a diving accident to commercialize his ideas. plegia, paraplegia, and muscular rendered me a C-5 quadriplegic. In The BEV program, funded by the dystrophy. It provides an evaluation December of 1991, I was released from Office of Special Education and which examines entrepreneurial char- the rehabilitation center and it took me Rehabilitation Services (OSERS), acteristics, assists in the completion of the better part of 1992 to come to terms focuses on business management and a business plan, and assists with locat- with my disability. At this point, I did business ownership for individuals ing and obtaining the necessary fund- some serious soul searching about what with disabilities. As 65-70% of indi- ing required for a business venture. to do with my life. I realized I would not be satisfied working for someone else, viduals with disabilities are either Steven Hanulik became aware of and, as it was a life-long dream of mine, unemployed or underemployed, the BEV and moved through the program I decided to start my own business. After self-employment alternative provides quite rapidly. determining the type of business, I start- greater independence. Additionally, ed researching and corresponding with assistive technology has expanded the "In less than four months, I have been a few. companies for potential future opportunities for the home-based able to locate, finance, and purchase an business relationships. Recurring health entrepreneur. established business. I have been signifi- problems put me in the hospital from For more information on BEV, cantly disabled by muscular dystrophy Februay through April of 1994. After since the age of three. With the help of contact Kathleen George, Pittsburgh returning home and a short readjustment Blind Association, 300 S. Craig, The BEV in locating information and period, I started to focus on my business reviewing potential opportunities, I was Pittsburgh, PA 15213 I again and met with limited success. As (412/682-5600). able to find a business that required mini- my business is in an entirely new field . mal physical labor, but needed my skills

HMO's and denials of treatment are medical practice to get a second opin- Sign @f the Times increasing. "All Medicare beneficiaries ion. If no resolution is forthcoming, have a right to appeal denial, but only consider paying out-of-pocket to see a 2% of all denials are appealed. How- specialist, arranging ahead of time for The U.S. Equal Employment Oppor- ever, more than 75% of those who the specialist to relay treatment tunity Commission (EEOC) has appeal are successful." If you want to options back to the HMO physician. released Compliance Manual Section appeal a denial, write to your Social Another tack if you like your HMO 902: Definition of the Term Security office, or to the insurance physician is to become knowledgeable "Disability" which provides informa- carrier whose name is on the notice yourself about treatment options and tion and instructions for determining of denial. start requesting specific treatment whether an individual has a disability options from the physician. The People's Medical Society sug- . as defined by the Americans With Disabilities Act of 1990 (ADA). gests there are two ways of resolving disputes with an HMO. First, file a The Commission believes the complaint with the patient grievance language of the ADA, if left alone, committee. If that is not successful, could be too broadly defined. contact your state's insurance depart- To obtain copies of the guidance, write ment. to: EEOC, Officeof Communications A recent article in Fibromyalgia and Legislative Affairs, 1801 L Street, Network offered these comments: N. W., Washington DC 20507. Give the physician with the HMO a Have you been denied treatment try. If you are not comfortable with or referral by your HMO? your treatment, be persistent in ask- ing for a specialist. If told no, ask for According to AARP Bulletin more an explanation. Suggest it is good and more Medicare patients are in Margaret A. Nosek, PhD, health care. I see two roads to solving entitled Operationalizing Consumer Center for Research on Women these problems. First is to educate Decision-Making and Choice in the with Disabilities, Baylor College of physicians about the ordinary health VR (vocational rehabilitation) Process. Medicine, Houston, TX, writes "In needs of women with disabilities. "At the Sixth International Post-Polio December, 1993, my research staff Right now, they receive almost no and Independent Living Conference, and I spun off from ILRU and began training on this in medical school. I won the drawing for therapy at the Center for Research on Women You would be surprised how many Futures Unlimited with Ed Snapp and with Disabilities at Baylor College of women told us their doctors treated his staff in Columbus, Mississippi. Medicine. While we are still collabo- them as if they had no need for Lil and I spent 14 days there in reproductive health care. Second, and rating with ILRU on several studies November as Ed's guests which related to independent living, our new equally important, is training women included a place to stay as well as the passion is the long-neglected and criti- with disabilities on how to work the daily treatments. Southern hospitality cally important area of sexuality and system, what they need to maintain is indeed fine! The treatments includ- health issues for women with physical good reproductive health, and how to ed twice daily massages, pressure disabilities. demand and receive the services they points, and quiet time suspended on know they need. "With funding from the National slings in warm water tanks and pools, Institutes of Health, we have been "I have one more new passion - all done in a darkened environment in doing a major national study of spirituality and rehabilitation. For me, accordance with Ed's theories. Staff women with physical disabilities. living as a single, independent woman members were enjoyable to work More than 950 women responded to with a severe physical disability (spinal with. I noticed some immediate bene- our national survey (half with disabili- muscular atrophy) has posed many fits, but have not seen long-term ties, half without). You may have filled challenges. I regularly draw on my gains. From what other participants out this survey - THANK YOU! We spiritual beliefs and disciplines to get said, none of whom were post-polio, received a lot of feedback from through it all. I was invited to attend people respond individually to the respondents that they were happy a conference on this topic at the treatments and all were positive about someone was finally asking these National Institutes of Health. It was the program. " questions. While we are still analyzing two days filled with lively discussions, all the information, a few messages mostly about the differences between are coming out loud and clear. The religiousness and spirituality, and loudest - FRUSTRATION. The rate about how virtually nothing is known After the 1994 G.I.N.I. conference of marriage and sexual activity is con- of the role spirituality plays in the Mary Westbrook, PhD, siderably lower among women with lives of people with disabilities. If you returned to the University of Sydney physical disabilities than women with- would like to share your thoughts, where she lectures to students in the out disabilities. Understandably, so is please send them my way at Center Faculty of Health Sciences on the the level of sexual satisfaction. We are for Research on Women with Psychology of Physical Disability. examining what correlates with these Disabilities, 6910 Fannin, In March, Mary attended the 12th lower numbers, for example, self Suite 310-South, Houston, TX World Congress of the International esteem, body image, work status, 77030 (713/797-6282 voice and Federation of Physical Medicine and social stereotypes, use of orthotic TDD, FAX 7 13/797-6445) e-mail Rehabilitation in Sydney and present- equipment. We will know by the end mnosekt3bcm. tmc. edu. " ed a paper on "Changes in post-polio of the summer how important such survivors over five years: Symptoms factors are. This is not to say that and reactions to treatment." At a women with physical disabilities are polio consumers forum held during not sexually active. Indeed, 31% of Jack Genskow, PhD, Professor, the congress she presented "The women with disabilities in our sample Human Development Counseling hassles of living with post-polio: had children. So ob/gyns - look out, Program, Sangamon State University, Some survival strategies." we're coming! Springfield, Illinois, reports he was on sabbatical for the 1994 Fall semester She has recently contributed two "Which leads me to my new soap box and did not teach last Summer. "It chapters on health psychology enti- - access to reproductive health care was great! My major project was writ- tled, "How social expectations differ for women with disabilities. I found ing a handbook entitled Consumer for women and men who have that I am not alone in my long history Involvement on Advisory Boards become disabled" and "Coping with of difficult experiences with ob/gyns. and Councils: An Issue of Uncom- the late effects of early life disabili- Women we surveyed reported physi- mon Common Sense to be published ties." She is completing research cal barriers in doctors' offices by the Rehabilitation Research and comparing the experiences of moth- (exam tables, scales, mammography Training Center at the University of ers with disabilities (mobility and hear- machines) and lack of information on Wisconsin-Stout, Menomonie, ing impairment) with those of non- the part of physicians about how dis- Wisconsin. I also was one of ten disabled mothers. Another project has ability affects reproductive health as Institute on Rehabilitation Issues (IRI) compared attitudes toward disability serious problems in getting good scholars wh~wrote a monograph Continued on page 6 5 REHABILITATION GAZETTE IVOL. 35, NO. 2

of mainstream Anglo-Celtic Australian I independent living center in Cleve- I and the priorities you hold so dear. society with those ifAustralians from land, Ohio. Susan has obtained new "His disabling bout with polio must Greek, German, Chinese, Arabic, and computer equipment and would high- have given him far more understand- Italian backgrounds. ly recommend Drag and Dictate ing about life from the other guy's The most memorable aspect of the by Windows. point of view. For that reason, his dis- G.I.N.I. conference was her interac- ability was important to his ability to tions with other participants. "I found ** / govern the way he did and the choic- myself acting in a much more extro- es he made. " Polio survivor Nell Blaine's recent verted and relaxed manner than usual exhibit at the Fischbach Gallery, 24 Mona recently had a piece published and it struck me that it was like not W 57th St., New York, NY 10019- in the Cape Cod Times. For samples being disabled. I had never realised 3935 (212/759-2345) was her 54th of her work, contact Mona at 1632 the extent to which having a visible Asher Lane, Orlando, FL 32803 disability affects you when meeting one-woman exhibition. A catalog of her recent oils, watercolors, and (407/896-9904). another person for the first time. drawings is available postage paid for Although not consciously, your mind $7. The selections from her early is wondering what assumptions are work were also recently shown at the being made about you, whether the Tibor de Nagy Galley, 41 W 57th other person is uncomfortable with nks to the many St., New York, NY 10019 nds who regularly disability, etc. At G.I.N.I. almost (212/421-3780). eveyone had had polio. It was a contribute to our work. constant. I realised, this is how the We offer a special thank you to rel- nondisabled people must approach atives and friends of the family of making new acquaintances." Mona Hughes began writing Joseph H. Howie who honored his Post-polio has forced Mary to give up a column entitled "Opening memory by contributing to G.I.N.I. typical gardening but she has just had Doors" for the Orlando Sentinel in Joseph H. Howie was the father a courtyard area with built up garden December, 1993. Her now-weekly of polio survivor Polly H. Dawson beds constructed which she can column "covers about everything that of Madison, Mississippi cultivate from her wheelchair. relates to the condition of a human May Westbrook can be contacted at being with a disability. Sometimes nd relatives of Bill 29 Valerie Ave., Chatswood, N.S.W. the columns are strictly informational Ft. Smith, Arkansas, hus- 2067, Australia. and sometimes they contain my opin- ions." In her recent column regarding Franklin D. Roosevelt, Mona writes "But anyone who has joined the Susan Armbrecht is now the co- ranks of the disabled can attest that it president of the Board of Directors of changes you inside as well as physi- Services for Independent Living, the cally. You think differently about life

TaxmFree Contributions Enclosed is my generous contribution to support G.I.N.I. in its work.

Name Check enclosed: Street Address G.I.N.l.'s Federal ID No. is 34-0961952 City, State, Zip $1000 $50 Country $500 $25 This gift is: In memory of A tribute to In honor of Unspecified $100 $10

Please send acknowledgment to: Name Please return to: Street Address Gazette International , Networking Institute (G.I.N.I.) City, State, Zip 5100 Oakland Ave., #206 Saint Louis, MO 631 10 USA Country fascia ta move easily between the For me, this was a new way to look muscles and other structures facilitat- at my own body. I was intrigued by An Encounter with ing smooth, unrestricted movements the sense of wholeness that it pro- and protecting the delicate nerves vided as I considered my areas of Myofascial Release and blood vessels. Over time, with tightness. During one of the releases the physiological and emotional on my neck, a cervical release, I felt stresses of our lives, particularly my head move to one side as the Cast March I traveled to Sedona, those of us with neuromuscular dis- therapist supported my head from Arizona from rural Missouri to a abilities, the fascia may become behind, while I was lying on the training institute to learn the tech- tight and less fluid, causing signifi- treatment table. I then felt some niques of myofascial release taught cant restrictions. The result is quivering and movement near my by the physical therapist who devel- usually pain. shoulder blade as the trapezius mus- oped the treatment approach in the cle began to contract. As I was very mid-eighties, John F. Barnes. My Barnes compares the tightening of the fascial system to bailing wire quiet with my eyes closed, the feel- reservations about being able to ing of the myofascial release was participate as I have considerable around the nerves and blood vessels. And, tightness in one part of our foremost in my mind. Wow! I was an leg and hip weakness from polio in active participant in the change in 1953 were dispelled by therapists body, since we are connected by this vast system of fascia, may be trans- my body. For about five weeks after from the Myofascial Release Treat- the training, the left side of my neck ment Center in Paoli, Pennsylvania. ferred to another part of our body, far from the site of the restriction. has been relaxed and flexible. I have I was able to perform the releases begun to tighten up a bit so it is time we learned with no physical difficulty. Headaches, temperomandibular joint (TMJ) pain, backaches, and diffuse to find a therapist who uses myofas- As I entered the large meeting room pain in many places in our arms and cia1 release in treatment. in a lovely resort nestled in the red legs may be the result of the fascial I believe that myofascial release and rocks of Oak Creek Canyon, I won- restrictions of our aging bodies. craniosacral therapy may hold dered what I would learn that I could "Assisting Persons with a Post-polio answers for us, and we can expect use as an occupational therapist a reduction of pain and increase working with young children with Syndrome," is one of a number of articles by Barnes and other thera- in movement. Being able to relax cerebral palsy and traumatic brain completely and trust the therapist injury. Secondarily, I hoped to learn pists in his extensive manual on the myofascial release techniques and who is providing the treatment are how to work with my own tightness necessary for effective changes. in my back and neck (the trapezius craniosacral therapy. He feels that polio survivors respond well to treat- Myofascial release is truly a holistic muscles and the long latissimus dorsi approach to healing, using the mind- muscles), and perhaps, learn to ment programs using myofascial release and neuromuscular reeduca- body connection which we are now relieve some of the joint tightness acknowledging is vey powerful. I have noticed in my husband who tion. Long-term imbalances in our has arthritis. muscle length and strength cause REFERENCE:Myo fascia 1 Release: The stresses of overuse and microtrauma, Search for Excellence (1990),John F. Over the next four days, I learned and result in pain and decreased Barnes, PT and Rehabilitation Services, how to "quieten down," a Barnes function. Inc., 10 S. Leopard Road, Paoli, PA term meaning to focus, and to pro- 19301, $65. vide myofascial releases with chang- Many post-polio survivors have used ing partners, most of whom were the fascia to support their bodies physical, massage, and occupational over the years and releasing some therapists. As we worked with each of the tissue with this therapy may other, as both therapist and patient, cause loss of functional abilities, i.e., I became aware of the wholeness of loss of support around the pelvis my own body, and how light pres- which stabilizes the hips can cause sure in specific places could relieve new problems with walking. So, a the stresses in my muscles. word of caution, when using myo- fascial release therapy, muscle reed- Fascia is the connective system with- ucation and physical and emotional in our bodies, surrounding every support must be provided by a muscle, joint, and even the individual trained physical therapist. As the cells; d is the covering of the brain releases are done with a minimal that elongates to cover the spinal amount of pressure on the body, cord and all the nerves leaving the there is no pain or discomfort associ- spinal cord. Our bodies require the I ated with the treatment. I I Gazette International Networking Institute's Non-profit Org. U.S. Postage REHABILITATION GAZETTE PAID Jefferson City, MO (G.I.N.I.) Permit No. 210 5100 Oakland Avenue, #206 Saint Louis, Missouri 631 10 USA

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'1 995 AUGUST AlDEX China- sium and Exhibition on Orthopedic I I and Paralysis Sequelae Rehabliita- East West Exchanae Inc.. 2211 Metcalf I = St., Honolulu, HI "96822, 808/955- Conference Center for Science and 6741. Eighth Annual Rehabilitation Denver, CO. Contact: Colorado Post- Technology (CICCST), 44, Kexue Yuan Conference: Contemporary Polio Connection Support Group, 9112 Nan Rd., Shuang Yu Shu, Hai Dian, Rehabilitation Issues, University of W. 81st Lane, Arvada, CO 80005, Beijing 100086, P.R. China. Closing Kentucky, Department of Physical 303/423-1179 or May Ann Hamilton, the Gap Conference, Microcomputer Medicine and Rehabilitation, August 24- Denver, CO, 303/722-6945. Technology in Special Education and 26, Radisson Plaza Hotel, Lexington, Conversation on Disability Issues 11: Rehabilitation, Minneapolis, MN, Octo- KY. Contact: Carol Percy, College of Secondary Conditions and Aging ber 19-21, contact Closing the Gap, Allied Health Professions, University of with a Disability, September 13-15, P.O. Box 68, Henderson, MN 56044, Kentucky, 465 East High St., Suite 204, Syracuse, NY. Contact: Department of 612/248-3294. NOVEMBE R Lexington, KY 40507, 606/323-6459. Physical Medicine and Rehabilitation, American Academy of Physical Promoting Health and Quality of SUNY Health Science Center, 750 East Medicine and Rehabilitation Annual Life for Polio Survivors, August 26, Adams St., Syracuse, NY 13210, Assembly, November 16-20, Marriott's North Ridgeville Education Center, 315/464-4783. European Respira- Orlando World Center, Orlando, FL. North Ridgeville, OH. Contact: Dave tory Society, Annual Congress, Many Voices, One Future, TASH Livingston, Ohio Polio Network, 2 16,' September 16-20, Barcelona, Spain. (The Association for Persons with Severe 327-0366. International Symposium Contact European Respiratoy Society, Handicaps), November 30-December 2, on Women with Disabilities, August 60 rue de Vaugirard, F-75006 Paris, Hilton Hotel and Towers, San Francisco, 29, immediately precedes UN World France. Siouxland Post-Polio CA. Contact: TASH, 29 W Susque- Conference on Women's NGO (non-gov- Network Conference, September 22, hanna Ave., Suite 210, Baltimore, MD ernmental organization) Forum, August St. Luke's Medical Center, Sioux City, IA 21204-5201. 29-September 8, Beijing, China. Contact Contact: Mary Kay Tevis, RN, 712/239- 1996 SEPTEMBER 18th World NGO foreign secretariat, attention: Ann 4202. Post-Polio Information Days Congress of Rehabilitation Inter- Berancon, 211 E. 43rd St., Suite 1500, - 95, September 22-24, Montreal, national, September 16-20, Auzdand,, , New York, NY 10017 (FAX 212/922- Quebec. Contact: Post-Polio 95, 95 New Zealand. Contact: Convention 9269). SEPTEMBER Post-Polio Arlington Ave., Montreal, Quebec, H3Y Management, P.O. Box 2009, Auck- Syndrome: Aging with a Disability, 2W5, Canada, Tel/Fax 514/932-6092. land, New Zealand, 0-9-360-1980. September 8-10, Holiday Inn Southwest, OCTO B E R International Sympo. .