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Highlighting Current Research and Resources Related to Cerebral Palsy from Around the Globe News In Technology Roaming Phones for the Disabled Roaming Phones for the Disabled January 28, 2000 - USA Lucent Technologies and Bell Atlantic Mobile have refined digital telephone transmission technology to enable wireless phones to transmit typed text via TTY as effortlessly, if not better, than the way they transmit voice data. Andrea Linskey, spokeswoman for Bell Atlantic Mobile, said, "We're leading a drive to make digital wireless communication accessible to all customer, including those with disabilities." A TTY is the text-telephone adaptive device commonly used to communicate by telephone for hearing- or verbally- impaired persons. The products and services will be available to Bell Atlantic's U.S. consumer market on the East Coast and in parts of the Southwest by the second half of 2001. Lucent and Bell Atlantic worked together to meet a mandate from the Federal Communication Commission. Section 255 of the Telecommunications Act stimulates that handicapped person will receive better access to communication, including 911 access. And they're not alone. Swedish company Telesta developed a similar technology last September. They've recently collaborated with Sweden-based World Federation of the Deaf to circulate the technology to the 70 million people around the globe. To promote the widespread use of the technology across the country, Lucent is allowing royalty-free use of thee technology and its patents to wireless service providers and manufacturers of TTY products. The obstacle to cellular service in its current state is that the sensitivity of the TTYs. The vocoder found in most cell phones - the device that turns speech into digital format for transmission -can't send a message without tiny glitches of dropout. For voice communications, the glitches are often imperceptible, but for TTY machines, a tiny disturbance can garble an entire message. To transmit text, digital phones need the TTY tone detector hardware chip. Once the phone detects TTY, rather than voice transmissions, the telephone and digital network transmit information differently and more carefully than normal, thus reducing the margin of error and sending out a clear text message. "With this new technique, zero errors occur where voice transmission would be lost. We tried for equivalent performance, but actually exceeded it" said Michael Recchione, one of the developers of the technology in the Bell Labs Speech and Audio Technologies Group. Users will need a cellular-ready TTY machine, available through adaptive technology retailers, such as Ameriphone. They will also need a cellular telephone with the TTY chipset installed, but exactly who will manufacture the phones is uncertain. Motorola, Qualcomm, and Audiovox are Bell Atlantic Mobile's current vendors and, said Linskey, the company will approach them first. Cellular providers will also issue a monthly service fee for the extended capability. Details on specific pricing and service availability currently are unavailable. While the technology to transmit TTY communications via digital phone increases mobility, users will still be limited to the 30 words per minute speed of the TTY. "It's the nature of the equipment,"said Lee Whritenour, member of technical staff for Bell Atlantic Mobile. "Many users can type faster than the machines can transmit." Though not perfect, mobile TTY over a cellular network are a big advance for the disabled. "It's all come together in this last year," said Whritemour. "TTY manufacturers are making models compatible with cell phones, and the cellular industry is making cell phones compatible with the TTY. It's all happening at once". Source: www/wired.com/news/technology/0,1282,33945,00.html
Pennsylvania, USA If you rely on a wheelchair and have little or no upper body movement, it's often difficult to get a drink that you need. You may often have to depend on caregivers whose attention may be diverted by other concerns. A new product called "Drink-Aide" claims to allow you to be able to drink water independently. Drink-Aide consists of an insulated water bottle, a vibration resistant flexible drinking tube and a universal clamp. The universal clamp fastens the insulated water bottle to a wheelchair, bed or any other convenient location. This hands-free innovation allows a person with a disability to drink independently - in the middle of the night, outdoors or even on the go. Drink-Aide was designed, tested and produced by people with physical disabilities at Inglis House in Philadelphia, PA, USA. You can order Drink-Aide for US$36 at www.drink-aide.com/home.html or call them at 1-800-336-7022. Source: www.drink-aide.com/home.html
Maryland, USA Research conducted and supported by the National Institute of Neurological Disorders and Stroke (NINDS) continuously seeks to uncover new clues about cerebral palsy (CP). Investigators from the NINDS and the California Birth Defects Monitoring Program (CBDMP) presented data suggesting that very low birthweight babies have a decreased incidence of CP when their mothers are treated with magnesium sulfate soon before giving birth. The results of this study, which were based on observations of a group of children born in four Northen California counties, were published in the February 1995 issue of Pediatrics*. Low birthweight babies are 100 times more likely to develop CP than normal birthweight infants. If further research confirms the study's findings, use of magnesium sulfate may prevent 25% of the cases of CP in the approximately 52,000 low birthweight babies born each year in the United States. Magnesium is a natural compound that is responsible for numerous chemical processes within the body and brain. Obstetricians in the United States often administer magnesium sulfate, and inexpensive form of the compound, to pregnant women to prevent preterm labor and high blood pressure brought on by pregnancy. The drug, administered intravenously in the hospital, is considered safe when given under medical supervision. Scientists speculate that magnesium may play a role in brain development and possibly prevent bleeding inside the brains of preterm infants. Previous research has shown that magnesium may protect against brain bleeding in very premature infants. Animal studies have demonstrated that magnesium given after a traumatic brain injury can reduce the severity of brain damage. Despite these encouraging research findings, pregnant women should not change their magnesium intake because the effects of high doses have not yet been studied and the possible risks and benefits are not known. Researchers caution that more research will be required to establish a definitive relationship between the drug and prevention of the disorder. Clinical trials now underway, one of them a collaboration between the NINDS and the National Institute of Child Health and Human Development, are evaluating magnesium for the prevention of cerebral palsy in prematurely born babies. *Nelson KB, and Grether JK. Can magnesium sulfate reduce the risk of cerebral palsy in very low birthweight infants? Pediatrics, February 1995, vol.95, no.2, page 263. Source: www.ninds.nih.gov/health_and_medical/pubs/
cerebral_palsy.htm Climbing Wheelchairs Reach New Heights News In Technology June 1999 - USA Ramps, lifts, stair glides, curb cuts, barriers. Now there is one more solution to overcoming barriers for people who use wheelchairs. Make one that climbs. The INDEPENDENCE 3000 IBOT Transporter is the latest in attempts to create a wheelchair that overcomes barriers often faced by people with disabilities. This advanced gyro-balanced system is designed to operate on four wheels or two wheels, stabilizing the user by instantly and automatically adjusting and balancing itself. Among its many design features is its ability to allow a seated user to move about at eye-level while balanced on two wheels. Its rotating four-wheeled base is designed to allow the user to climb stairs and traverse uneven and hilly terrain, such as grass, sand and rocky pathways. In its four-wheel operation the device is designed to climb over street curbs, while keeping the seated user level and balanced. This technology makes use of sensors to continuously and automatically adjust the device to account for movement of the seat and the user's centre of gravity. It is an integrated combination of electronic, sensor and software components. Backup systems have been designed to assure the safety of the user in all functions. It is powered by state-of-the-art rechargeable batteries and can operate all day, depending upon usage, on a single charge. Five years ago, the American company Johnson & Johnson partnered with Dean Kamen, founder of DEKA Research & Development Corporation to develop the advanced mobility system as an FDA-approved medical device. Kamen invented the INDEPENDENCE 3000 IBOT Transporter which is currently in its final stage of clinical trials and extensive product testing involving people with disabilities in order to demonstrate its safety, efficacy and functionality. The results will be completed and submitted to the FDA within the next year and the company hopes to receive approval for marketing in 18-24 months. The medical device will not be made available for sale until FDA review and approval have been achieved. Development and marketing of the medical device will be conducted by Johnson & Johnson's subsidiary, Independence Technology. The company is developing other products as well using innovative technology to help meet the needs and desires of people with disabilities. INDEPENDENCE 3000 will be available only by prescription with its features set to the size, weight and ability of the user. Price range is in the area of $20,000 - $25,000 and will include a multi-year service warranty. The initial version is designed for adults and the company has plans to develop a version for children, as well as for adults with more unique needs. For more information contact http://www.indetech.com or the telephone information service 1-888-IND-3000. Source: Johnson & Johnson Independence
Technology www.indetech.com "Two men locked into their bodies by complete paralysis have been able to think messages to the outside world. A team from the University of Tubingen, Germany, report in the scientific journal Nature that people with the progressive neurological disease amyotrophic lateral sclerosis (ALS) have been able to spell out sentences on a screen by the power of thought alone. Fitted with electroencephalogram (EEG) devices to drive electronic spelling devices, the individuals with ALS learned to produce voluntary changes in their own brainwave states lasting two to four seconds that enabled them to push a cursor on a video screen to select letters." Those letters become words and the words are expressions of thought and thus communication is reinvented. Again. Brain Computer Interface (BCI) is technology that is quickly coming within reach as the newest communication channel for people who cannot communicate whether physically or by using existing technological devices. Technologists have been able to utilize the EEG which records from the scalp, electrical activity produced by neurons in the brain, as computer interface or input device just as a keyboard or mouse functions. The electrical brainwave activity is inputted in to the computer which processes it and provides output on the screen. The trained user can communicate by changing their brainwave states to move a cursor or select letters on the screen. This news in technology provides interesting opportunities for people with cerebral palsy who have communication challenges. In other areas, a team at Imperial College, London, proposed using the technology to "ask" people in deep comas whether they were aware of their world. Source: Tim Radford, "Brain Scans turn thoughts into words", The Guardian,
April 4, 1999. News In Travel Opportunities for people with disabilities to travel are increasing every year. Recently, learning vacations have become extremely popular for all kinds of travellers. The idea of experiencing a new land while contributing and engaging in a global learning environment has a certain appeal for explorers - including those with disabilities. A US-based national non-profit organization is helping to make that possible. Mobility International USA's motto is "Challenge Yourself and Change the World!" Their mission behind this motivator is to empower people with disabilities around the world through international exchange information, technical assistance and training, to ensure the inclusion of people with disabilities in international exchange and development programs. MIUSA's international exchanges specialize in leadership training, community service, cross-cultural experiential learning and advocacy for the rights and inclusion of persons with disabilities. These short-term group exchanges for youth, adults and professionals take place in the USA, Azerbaijan, Bulgaria, China, Costa Rica, East Asia, United Kingdom, Germany, Italy, Japan, Mexico, Russia and other countries. Activities include training seminars and workshops, adaptive recreational activities, cross-cultural communication, language classes and volunteer service projects. Programs offered in the 1998-99 term included Costa Rica Leadership, Diversity and Disability Exchange; Oaxaca Professional Exchange; Mexico Leadership, Diversity and Disability Rights Exchange; International Teen/Parent Leadership Exchange; International Symposium on Microcredit for Women with Disabilities; and Japan Cross-Cultural Leadership and Disability Rights Exchange. Success stories of people with disabilities participating in international exchange opportunities are posted on the MIUSA;s web site (www.miusa.org/away.htm) under their "A World Awaits You" project. For more information on exchange opportunities contact the Exchange Coordinator at (541) 343-1284 or email: exchange@miusa.org. Source: Mobility International USA
www.miusa.org News In Technology Dentist's Web Course to Help Improve Access to Care for People with Disabilities Technology for Humanistic Concerns Sharing: An Innovative, New Idea from a Centre on the
Cutting Edge Dentist's Web Course to Help Improve Florida, USA For people who have mental, physical or emotional disabilities, finding a dentist trained to care for them can be difficult. A new program designed to familiarize dental professionals with the issues and technology involved in providing care to people with disabilities aspires to change that. Entitled, "Oral Health Care for Persons with Disabilities," this free, continuing education program, developed by Dr. Paul Burtner at the University of Florida College of Dentistry, is accessed over the Internet. Including a wide range of issues, the Web course describes how to position and protect the airway of people with spinal cord injuries, cerebral palsy or scoliosis, teaches how to prevent patients from aspirating materials, fluid or instruments, and teaches how to care for those who are unable to control their own oral secretions. Other topics include treatment modifications, the use of different restorative materials, drug interactions, psychological needs, communication considerations, and office accessibility and accommodations. The course can be found on the UF College of Dentistry's Web site located at http://www.dental.ufl.edu. Technology for Humanistic Concerns Taipei, Taiwan The political body that steered Taiwan into the technological forefront to dominate global computer production has a new initiative: human-friendly technology. In an attempt to "induce a cultural change of outlook on technology," the National Science Council of Taiwan has endeavoured to re-focus technological development to address people's needs' instead of ever present corporate wants'. This is great news for people with disabilities as one of the main aims of this new program entitled "Technology for Humanistic Concerns," includes developing technological solutions to "human handicaps". Funded by the National Science Council, an organization that has sole responsibility for funding universities and scientific research in Taiwan, the projects effects will be seen in a multitude of important fields from education to international product commercialization. Already, the council has more than doubled annual spending on research for technology to help overcome human handicaps. Ninety-five million Taiwan dollars ($2.9 million US) have been designated and a framework has been created to unite formerly "disparate and uncoordinated efforts". In 1998, the council sponsored a series of workshops on technology to overcome specific disabilities that culminated in a four-day public conference. This year, the council has launched a design competition at the university level for student teams to create tools to assist people with disabilities. Other aspects of this new initiative include a large-scale test of nonpolluting electric vehicles and the creation of a digital museum on the Internet. Sharing: An Innovative, New Idea from a Centre on the Cutting Edge Sudbury, Ontario, Canada New ideas have been growing in the northern city of Sudbury, Ontario, Canada. Historically known for its rich mines, it is now known for its enriched minds. A technologically advanced education Centre is interested in sharing innovative ideas, opportunities for collaboration, and information pertaining to alternative program delivery models with interested individuals and organizations. In 1996, The Glenn Crombie Centre, a fully accessible, barrier-free, award-winning, world class structure was built on the grounds of Cambrian College. The goal: to become a "state-of-the-art education and training resource complex to assist persons with learning and physical disabilities in the pursuit of their educational and vocational goals." In addition, to act as a testing site for new and innovative assistive telecommunication technologies and mobility devices. The only one of its kind in North America and a leader in the utilization of assistive devices and adaptive technology, the centre has achieved its goal. In 1998, the Centre served the needs of over 700 clients by providing psychometric, educational and vocational assessments, student counselling, training on specialized technological supports for students who are blind or partially sighted, Deaf, deafened or hard of hearing, students who have a learning disability or who have medical or mobility needs. Technically, the Centre is innovative. The building, equipped with the latest in technology is complete with its nine-station computer laboratory with adjustable work stations, ergonomically designed furniture and 20-inch monitors, voice recognition rooms with voice input capabilities, reading assistance rooms equipped with reading scanners, voice output computers, closed-circuit television with screen enlargement technology, and a Braille printer. In order for people to reach their educational and vocational goals, skills learned at the Glenn Crombie Centre must be integrated into the workplace. To make this a reality the Centre assists with workplace reintegration, employer training and workplace modifications. The Centre's interest in collaboration and sharing with interested individuals and organizations stems from their future goals which include focussed research in the field of disabilities, enhancement in the development and utilization of advanced technology and to provide alternative training programs for clients. For more information contact Susan Alcorn MacKay, Director of Special Needs Services, The Glenn Crombie Centre: samackay@cambrianc.on.ca (705) 566-8101 ext. 7793. Source:"The Glenn Crombie Centre, A Northern Success Story". Abilities Magazine, Spring 1999, pg. 27. www.enablelink.org/AbilitiesMag/default.htm News In Medical Research Study Ties Cerebral Palsy to Inflammation and Blood-Clotting Abnormalities October 1, 1998 Groundbreaking new research provides strong evidence that inflammation and clotting abnormalities may be important causes of cerebral palsy (CP) in full-term babies, who account for about half of all children with this condition. The study may lead to ways of identifying babies at risk for CP and ultimately to new preventative therapies. Using advanced immunochemistry techniques, researchers measured concentrations of more than 50 substances in archived dried blood samples. Thirty-one samples were from children with CP, most of which were born full-term with no clear explanation for developing the condition. The remaining 65 samples were from children who did not have CP. The blood samples were provided by the Newborn Screening Program of the California Genetic Disease Branch, which archives blood that is taken from all newborns in California shortly after birth to screen for metabolic disorders. The study examined levels of inflammation markers called cytokines, and of coagulation (blood-clotting) factors, in the birth blood samples. The results were dramatic. All of the infants who were later diagnosed with CP had higher concentrations of five different cytokines in their blood than any of the other infants who did not have the condition. Babies with CP also had greater-than-normal concentrations of one or more coagulation factors. "These factors appear to play a role in several different processes that can lead to CP," says Karin B. Nelson, M.D., a child neurologist at the National Institute of Neurological Disorders and Stroke (NINDS) and lead author of the new study. The concentrations of these cytokines and coagulation factors were not related to the babies' gestational ages at birth, their birthweights, or the amount of time between their births and collection of the blood samples. This suggests that the findings associated with CP might be due to chronic or reactivated conditions, such as autoimmune disorders or chronic infections in the womb, rather than acute infections just before or after birth, which normally cause a rapid rise and fall of inflammatory cytokines, says Dr. Nelson. It is not yet clear how elevated levels of cytokines might increase the risk of CP. "These cell signalling factors are usually found only in very small amounts in the blood. What they are doing in relatively large amounts in these children with CP is a mystery," says Dr. Nelson. Previous studies have shown that cytokine production can be influenced by many factors, including infection and autoimmune disorders, trauma, oxygen deprivation, and tumors. Any of these factors might prompt elevations in cytokines that then act as toxins, damaging neurons and their connections in the developing brain. Cytokine abnormalities might also reflect underlying genetic or environmental factors that affect the brain. Because the levels of some cytokines were strongly related to development of CP, testing for abnormally high concentrations of these substances might one day allow doctors to identify babies at risk of developing the disorder. If so, they might be able to prevent some brain damage with medications such as antibiotics to counter infection-related inflammation or anticoagulants to combat clotting problems. Source: News Release from the National
Institute of Neurological Disorders and Stroke, National Institutes of
Health. News In Medical Research Treatable Brain Disorder May be Misdiagnosed as Cerebral Palsy Difficult Labours May be the Result of Problems in Infants
Rather than the Cause Treatable Brain Disorder May be Misdiagnosed as Cerebral Palsy Washington, DC - July 3, 1998 Researchers have identified a rare form of a treatable brain disorder that most likely would be diagnosed as untreatable cerebral palsy. Their results are reported in the July issue of Annals of Neurology. Joel Trugman, M.D., a neurologist at the University of Virginia School of Medicine and his colleagues in cooperation with collaborators Yoshiaki Furukawa, M.D., and Stephen Kish, Ph.D., from the Clarke Institute of Psychiatry in Toronto have identified a new hereditary disease which has similarities to the more severe hyperphenylalaninemia and the milder HPD/DPD (hereditary progressive dystonia/dopa-responsive dystonia). It occurs when a child receives two different mutant GCH genes, one from each parent. The combined effect of the two mutant genes produces a disease that neither mutation could produce on its own. This new hereditary disease was discovered when these neurologists were presented with a three-year old girl who could neither speak, sit up or roll over on her own. They found clues in the girl's biochemistry and in her family tree that led them to the previously unreported hereditary disease. They were able to treat the girl with an existing medicine using low doses, levodopa or L-dopa. The results were that she gained control of her muscles. She has grown to the age of seven and is walking using leg braces and talking. She has normal mental function and is doing better in school than ever expected. Although the great majority of CP patients suffer from brain injuries or diseases that medical science has yet to understand, the rare case exists that has been misdiagnosed because the symptoms and signs of neurological disorders are so complex. Source: For a complete transcript of this news article see Doctor's
Guide to Medical and Other News. For full research results see July
issue of the medical journal "Annals of Neurology." Difficult Labours May be the Result of Problems in Infants Rather than the Cause Over the past 10 years, research into the causes of cerebral palsy has made some advances and public awareness has increased. The misguided belief that the major cause of cerebral palsy relates to the birth process has been slowly changing. Research shows that less then 10% of cerebral palsy could be attributed to problems of oxygenation at birth. Furthermore, some researchers believe that difficult labours and post natal asphyxia may be the result of a problem with the infant rather than the cause. Prematurity is now recognized as a major risk factor. The risk of cerebral palsy is 27 times higher in infants who weigh less than three pounds at birth compared to those who weigh five pounds or more. In some instances, it is possible to identify the cause of CP as genetic syndromes, in utero infections, premature infants and those with prolonged low Apgar scores. More and more, these babies with cerebral palsy are found to have congenital malformations of the brain on a CT scan but in most cases, still no cause can be found for cerebral palsy. One would think with the advances in medicine and technology that incidence of CP in the Western World would have decreased. The rate has in fact not diminished but has changed in spectrum of condition. The incidence of spastic diplegia due to prematurity. Improved neonatal care has meant fewer globally involved patients attributable to hypoxia. Research continues in the search for answers. Source: American Academy of Cerebral Palsy and Developmental Medicine, Pediatric Orthopaedic Update The National Institute of Neurological Disorders and Stroke (NINDS) Cerebral Palsy page |
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