indian family of cerebral palsy by Paras Jagirdar

Complimentary Copy

Website : www.ifcporg.com

Official Newsletter

INDIAN

FAMILY OF

CEREBRAL

PALSY (IFCP)

Vol. IX, No. 1

Since 1994, India’s first quarterly newsletter on cerebral palsy October-December 2010 Fbef[³eve HesÀefceueer Dee@HeÀ mesjerye´ue Heeumeer

mesjerye´ue Heeumeer Hej, Je<e& 1994 mes Yeejle keÀe ÒeLece $ewceeefmekeÀ mecee®ej He$e Mega Surgical Workshop cum Rehabilitation Camp—Jaipur In Jaipur , a screening cum surgical camp on cerebral palsy was organised under the auspices of PANKH (led by the dynamic social activists Sri Umesh Kumar Bhandari, Sri Ravi Jain, Sri. Aneel Salecha and Dr. Govind) conducted by IFCP Hyderabad and Family for Health Awareness Trust twice in the year 2009. Around 500 hundred people with disabilities attended the camp for the multidisciplinary treatment. Amongst them 50 suitable children with cerebral palsy were operated. A colourful cultural programme was conducted by children with cerebral palsy. Attended dignitaries said that this camp should be conducted periodically to help the needy. Responding to the advise and suggestions the organizers of PANKH promised that this surgical cum screening camp will be conducted periodically and a permanent rehabilitation centre for the children with cerebral palsy will established in Jaipur. This camp was organized by eminent neurosurgeon Prof. A. K. Purohit and his expert team (Dr. Ankathi Praveen, Dr. Harsha, Dr. Ajay Kumar, Dr. Ravi and others.)

4 5

7 8 Photo 1&2 : Rajasthan Tourism Minister Mrs. Beena Kak visited the camp. Photo 3 : CP book was presented to His Excellency the Governor of Rajasthan Sri S.K. Singh. Photo 4 : Surgical Workshop. Photo 5,6&7 : Screening & Physiotherapy Camp. Photo 8,9&10:Inauguration of Camp & Cultural 1 Programme.

IFCP Newsletter Vol. 9, No. 1

SURGICAL AND SCREENING CAMP Rajkot, Gujarat Gokul Super Specialty Hospital in

association with NIMS, Indian Family of Cerebral Palsy and Family for Health Awareness Trust organized a 3day Cerebral Palsy diagnosis cum surgical camp from 25 to 27 of May 2010. In and around 300 people with cerebral palsy from Gujarat and

neighboring states attended the camp and 20 children were operated. Prof. Purohit delivered talk a on

Modern Management of Cerebral Palsy in IMA of Rajkot Branch. Large

number of professionals attended the meeting. Parents and Professionals felt that this kind camp cum surgical

Photo 1:Surgical workshop. Photo workshop should be conducted 2&3:Screening children with cerebral periodically for the benefit of people palsy. Photo 4:Inaugural session of the with cerebral palsy. camp.

Rehabilitation and Surgical Camp, at Kota, Rajasthan Chikitsa Seva Samithi, Kota under able leadership of Sri. Arjundev Chadda,Sri. Salil Gosawamy in association with Jaiswal Neuro Hospital(09414183883), Indian Family of Cerebral Palsy and Family for Health Awareness Trust organized screening cum surgical camp. Rajasthan Govt officials attended the camp and appreciated the services of the professionals. Looking at the great success of the camp the Govt assured that the all possible help will be extended to the organizers who ever conduct camps. 1

Photo 1:Inaugural session of the camp. Photo 2:Parents of children with cerebral palsy and professionals. Photo 3,4&5 Screening and physiotherapy evaluation. 2

IFCP Newsletter Vol. 9, No. 1

AVAZ AVAZ is an Alternative and Augmentative Communication (AAC) device developed by Invention Labs, a c o m p a n y incubated at IIT Madras and backed by alumni of IIT. AVAZ has been designed to help non-verbal c h i l d r e n , particularly those with Cerebral Palsy, to communicate with friends, family and teachers in an independent manner. Invention Labs, Chennai, has worked with Vidya Sagar, formerly the Spastics Society of India, Chennai to develop this product. Using AVAZ,

National Conference on Cerebral Palsy –Allahabad

a non-verbal child can ‘speak’ and convey virtually any thought in his A National conference on cerebral or her mind. Its dynamic message palsy was held thsuccessfully at

Allahabad, UP on 4 & 5th December 2010, around 350 delegates attended the conference. Prof. A.K. Purohit delivered keynote address on overview on cerebral palsy. Those who are interested to get the literature presented in the conference may contact:Dr. Jitendra Kumar Jain, Cell:0-9415235159

Paksistan Excellent rehab centre for children with cerebral palsy in Karachi, Pakistan, Many children need help from some of our unique services in the field of neurosurgical management of CP.

generation capability offers a huge advantage over traditional means of communication like flip charts and pre-recorded messages.

FUTURE CAMPS We are happy inform you that in near future screening cum surgical camps will be held in association with NIMS, IFCP and FHA at the following places. You are requested to utilize the services and benefits of the camp. Please contact the following organizers for the necessary information and details of the camps. Surgical and screening camp will be held from 14th to 15th December 2010 at Jaipur (Rajasthan). Please contact: Sri Aneel Salecha PANKH – 09829051400

Contact Persons: Kota (Rajasthan) Sri Arjundev Chadda 09414187428, 07442422428 Sri Salil Goswamy 09414001542, 07442488299 Jaipur (Rajasthan) Sri Aneel Salecha PANKH – 09829051400 Dr. Govind Amarjain Hospitals, Mansorovar, 09414202598, 09413990011 Dr. Solanki Tagore Hospital, Mansorovar 09414079343

Rajkot (Gujarat) Dr. P Modha Gokul Super Specialty Hospital, 09825078218 MANDSORE (MP) Dr. S. M. Jain 09425977776, 07422221101 Surgical and screening camp will be held from 20th to 23rd January 2011 at Jaipur (Rajasthan). Please contact: Sri Aneel Salecha PANKH – 09829051400

ANNUAL GENERAL BODY MEETING NOTICE Dear Members This is to inform that Annual General Body Meeting of IFCP will be held on 23rd of January 2011 with following agenda.

Agenda: z Rejuvenation of IFCP – strategies and action plan z Presentation of overall Report. z CP Ashram – progress report. z Presentation of accounts. z Elections to the executive body.

z Any other issue with permission of the chair Venue : Tagore Hospital, Mansorovar, Jaipur Time: 3:00pm to 5:00pm All members are hereby requested to attend the meeting.

IFCP Newsletter Vol. 9, No. 1

Mind your Language when talking to or about People with Disabilities The following information details terminology that should be avoided when talking to or about people with disabilities. The information was taken from literature published by the Ohio Governor’s Council on People with Disabilities and the President’s Committee on Employment of Persons with Disabilities. Afflicted — It is a negative work and suggests hopelessness. Use “has” instead. Patient — A term reserved only for doctors or hospitals. Because someone has a disability does not mean they are “sick” or are cared for regularly by a hospital or doctor. (Home car nurses are being taught to refer to the people they work wit as their “consumers” or “clients.”)

Gimp — Another out-of-date word, once used to describe people who walked wit a limp. It’s a put-down.

their lives in the best way they can and do not have to “overcome” the disability to do so.

Suffering — This means that the person is in constant pain as a result of the disability — rarely the case.

Spastic — Some people with disabilities have muscles that contort and contract on their own. Sometimes this can be controlled by medicine. It is a Victim — People who are product of the disability and “sacrificed” or a “casualty” or an should not be ridiculed. uncontrollable force. People with disabilities do not want to be Normal — Should never be used considered “helpless” or when referring to people. When “victims,” but as “people” with used to describe a person without many worthwhile attributes. a disability, it suggests that a person with a disability is Unfortunate — This implies “abnormal” or “subnormal.” “unlucky.” “unsuccessful” or “a social outcast.” People with Cerebral palsied, Epileptic — disabilities just want to be Person with cerebral palsy, person regarded as real, ordinary people. with epilepsy.

Retard or retarded — If a person Confined to a wheelchair or is considered “awkward” or wheelchair-bound — A person “different,” it does not mean that who uses wheelchair. they are retarded. People with mental retardation prefer to be Impaired — Means “spoiled” or called by their own names. “damaged.” A negative word. Correct word would be Disease — Describes a contagious “disabled,” or “limited” (when condition. Most people with describing function). disabilities are as healthy as anyone else. Crippled — This term is “Biblical” and portrays a person who can’t Mobility impaired, hearing do anything, someone to be impaired, v ision impaired, ignored. physically impaired, mentally impaired, etc. — None of these Deaf and dumb or Deaf-mute — terms are acceptable because These out-of-date terms were they all contain “impaired.” used to describe a person who could not speak or hear. Many deaf Challenged — Signifies a task people can speak, but choose not someone takes on to “overcome.” to, since their speech may be hard People with disabilities did not to understand. Deafness does not have a choice whether to have a make a person “dumb” or disability or to not have a “ignorant.” Use “deaf” or “hard disability. It happened! They did of hearing.” choose to get on with the rest of

Courageous — People with disabilities are not usually “brave” and do not want to be regarded as “super heroes.” They simply have the will to live and enjoy life’s pleasures as everyone else. Handicapped — Please remember, “people” always first, i.e. “people with disabilities.” When talking about “people,” the word is “disability.” When talking about “barriers,” the work is “handicapped.” The word “handicap” is a negative word because of what it represents (how the word was coined): “cap in hand” which was how people with disabilities had to make a living many years ago (by begging). Today, people with disabilities are working, paying taxes and becoming an integral part of society.

IFCP Newsletter Vol. 9, No. 1

2010 CNS, USA Top Ten Abstracts - Acceptance Great honour to Indian Neurosurgeons The Congress of Neurological Surgeons Scientific Program Committee has accepted this abstract as TOP TEN oral abstracts (for the Section on Pediatric Neurological Surgery): SMF for upperlimb spasticity it has been presented during the Original Science Program at the 2010 CNS Annual Meeting, October 16 – 21 in San Francisco, California,USA TITLE: Outcome of Selective Motor Fasciculotomy in the Treatment of Upper Limb Spasticity Due to Cerebral Palsy Authors: Aniruddha Kumar Purohit, Aneel Kumar Puligopu : To assess the outcome of selective motor fasciculotomy in relieving upper limb spasticity and thereby improving motor functions in persons with cerebral palsy. :Twenty people having cerebral palsy (12 females and 8 males) with age ranging from 5 to 35 (mean: 12.85)

years with upper-limb resistant spasticity due to spastic hemiplegia (n = 7), triplegia (n = 6) and quadriplegia (n = 7) were assessed using Modified Ashworth Scale, Selective Voluntary Control (SVC) Grade, Wee FIM Scale and hand function evaluation. Selective motor fasciculotomy (SMF) was performed on musculocutaneous nerve (n = 13) for elbow flexors spasticity, median nerve (n = 24) for pronators and wrist flexors spasticity and ulnar nerve (n = 3) for wrist flexors spasticity. Pre and post op therapeutic exercises were performed. Procedure: The nerve supplying the spastic muscle(s) was exposed (musculocutaneous nerve on the ventral side of upper 1/3rd of the arm, median nerve along the elbow crease and the ulnar nerve behind the medial epicondyle). The branch supplying the muscle was dissected into its component fascicles. The fascicles were electrically stimulated using bipolar current and hyperactive fascicles were sectioned. The proximal stump

was electro coagulated. Most often 50% of the fascicles were ablated. The mean follow-up period was 10.95 (6-24) months. Results: Statistical analysis using Wilcoxon Signed Ranks test showed significant reduction in spasticity, improvement in selective voluntary control, improvement of hand functions and improvement in Wee FIM (self care domain in particular) as shown in the table below. There was no recurrence in spasticity and complication following surgery. Conclusion: The Selective Motor Fasciculotomy of musculocutaneous, median and ulnar nerves significantly reduces spasticity in the affected muscle groups and thereby improves appreciably the self care (motor) functions in selected people with cerebral palsy who have harmful resistant spasticity with more than fifty percent selective voluntary control. The procedure is safe and the spasticity does not recur.

Books on Cerebral Palsy The Official Parent’s Sourcebook on Cerebral Palsy by James N. Parker and Philip M. Parker (Editors) Basic suggestions for researching cerebral palsy (e.g. finding guidelines on diagnosis, treatments, and prognosis) are followed by a number of topics, including organizations, associations, or other patient networks dedicated to cerebral palsy. Also includes resources for research dedicated to cerebral palsy such as contact names, links via the Internet, and summaries. Cerebral Palsy : A Complete Guide for Caregiving By Freeman Miller, Steven J. Bachrach “The best resource for parents for all aspects of cerebral palsy in children and babies. Highly recommended. Includes an overview of child development; medical issues; psychological, and social development; Hemiplegia, Diplegia, and Quadriplegia; and financial and

legal information.” (Allison Martin) Cerebral Palsy : A Complete Guide for Caregiving covers a range of ages (from baby to adult) and range of severity (impaired to handicapped). A large portion of the book is dedicated to questions and answers regarding the three major forms of cerebral palsy: diplegia, hemiplegia and quadraplegia. Developmental stages, milestones and issues for each type of cerebral palsy are described, from infant to teenager. Medical problems associated with cerebral palsy and intellectual, psychological and social development are addressed for all ages. Lastly, related topics such as finanical care, navigating the educational system, legal issues, and hospitalization are also covered. Supplemental information is provided on caregiving procedures and equipment such as tube feeding, adaptive equipment, growth charts, and orthopedics. A

very comprehensive dictionary rounds out the book. Parents of children with cerebral palsy or motor delays will find Cerebral Palsy : A Complete Guide for Caregiving to be an exceptional reference book for their child. Parents of preemies will also find a wealth of information here, as the scope of the book encompasses many developmental issues related to prematurity. Children With Cerebral Palsy : A Parents’ Guide By Elaine Gerlais addresses a wide variety of issues, including diagnosis; other medical and developmental impacts; family life; therapy; and special education. Each topic, is presented by a specialist in that area, provides valuable background for the recently diagnosed child. Parents will find this to be a gentle introduction to the world of cerebral palsy.

IFCP Newsletter Vol. 9, No. 1

New Research Could Help Children with Cerebral Palsy Hospital Uses Robots in Cerebral Palsy Therapy Scores of 3 and below are generally regarded as critically

Riley Hospital for Children in Indiana is using robots to low, 4 to 6 fairly low, and 7 to 10 generally normal. help children with cerebral palsy improve the movement Cerebral palsy is a rare disease, affecting two to three in their arms and legs. infants in every 1000 live born children in Western The hospital’s new interactive Robotic Rehabilitation countries. Recent studies have found a strong link Center has two robots that enable therapists to measure between low Apgar score and cerebral palsy in children the strengths and weaknesses of children with cerebral born to term or with normal birth weight, whereas palsy. This information allows therapists to better tailor studies in children with a low birth weight or born therapy sessions to provide the maximum benefit for preterm have shown conflicting results. the children. Using linked data from the Medical Birth Registry of The robots move the children’s limbs, and are designed Norway and the Norwegian Registry of Cerebral Palsy in to form connections between their limbs and their Children, the researchers assessed the association of brains. For example, one patient is a young girl with Apgar score five minutes after birth with cerebral palsy cerebral palsy who has great difficulty inher knees when in 543,064 children born between 1986 and 1995. she tries to walk. The robot moves her legs repeatedly in a walking motion, in the hopes that a connection will A total of 988 children included in the study (1.8 in 1000) were diagnosed with cerebral palsy before the age of be formed between her legs and her brain. five years. The therapy reprograms the brain, according to Dr. Greg Wilson, co-director of the center. He stated that Low Apgar score was strongly associated with later therapists have been doing this type of therapy for a diagnosis of cerebral palsy. The prevalence of cerebral long time, but now they have new tools to make therapy palsy in children with Apgar score of less than 3 was more than 100-fold higher than in children with a score more effective. of 10. In addition to cerebral palsy patients, robotic therapy is also helpful for children with traumatic brain injuries This association was high in children with normal birth or adult stroke patients. A study of robotic therapy weight and modest in children with low birth weight. revealed that children who receive the therapy demonstrate a 20 percent to 33 percent improvement Low Apgar score was also associated with all subgroups of spastic cerebral palsy, but the association was in walking and gait. strongest for quadriplegia. Robotic therapy is also availableChicago and Cincinnati, although these sites generally have waiting lists. The “Despite the strong association of low Apgar score with Riley center has two robots. One is a$370,000 robot used cerebral palsy, it is encouraging that almost 90% of for lower extremities and the other is a$140,000 robot children with an Apgar score of less than 4 at birth did not develop cerebral palsy,” say the authors. that focuses on the upper extremities. Source: HattiesburgAmerican.com “Hospital uses robots as new tool in kids’ therapy ‘Reprogramming the brain’” 9/8/10 -------------------------------------------------------------------

Low Apgar Score at Birth Linked to Cerebral Palsy ScienceDaily (Oct. 8, 2010) — A low Apgar score at birth is strongly associated with cerebral palsy in childhood, concludes a study from researchers in Norway published on the British Medical Journal website.

Given that Apgar score is a measure of vitality shortly after birth, our findings suggest that the causes of cerebral palsy are closely linked to factors that reduce infant vitality, they conclude. In fact, low Apgar score might be interpreted as an indicator of brain impairment that has occurred during pregnancy or delivery.

In an accompanying editorial, Professor Nigel Paneth from Michigan State University in the US says that a low Apgar score in a baby of normal weight “is an important clue that the baby has an increased risk of death and disability, even though most infants with such scores The Apgar score is a quick and simple way to assess a recover quickly and do well.” baby’s condition at birth. The baby is assessed on five simple criteria (complexion, pulse rate, reaction when He advises that such babies should be watched closely stimulated, muscle tone, and breathing) on a scale from for the persistence or development of signs of brain zero to two. The five values are then summed up to damage, especially in the light of robust evidence that obtain a score from zero to 10. babies with brain injury may benefit from head or body cooling.

IFCP Newsletter Vol. 9, No. 1

Teaching Dressing Skills to Children with Cerebral Palsy Children with disabilities, like all other children, should be encouraged from an early age to help with their own dressing. It is important, however, not to push a child to learn skills that are still too difficult for her level of development. Some people with total body cerebral palsy or who have both hands and arms affected may never be able to dress themselves. Learning to dress and undress is a major step toward independence. Depending on the degree of your child’s motor problems, independent dressing may or may not be a realistic goal. If you child has the motor skills, you will want to do everything possible to help him achieve the goal; if he has the desire and understanding without the skills, you will want to help him participate as fully as possible in the process. If your child is interested, she is bound to be more cooperative.

You can help make it easier for children and adults with cerebral palsy to dress themselves by: choosing clothes that are easy to put on and take off, such as those that zip or button in the front (not the back) or that have large buttons, ties, or Velcro fasteners; selecting easyto-fasten, comfortable shoes, such as slip-on shoes or shoes with Velcro closures; selecting clothing out of fabrics that easily glide over the skin and other fabrics, they are easier to put on and generally more comfortable to wear; and look for easy-on styles or step-in garments. You may want to talk to an occupational therapist about other suggestions. It is important to remember that, just as with bathing, care should be given so that the caregiver’s back is protected while helping the child to dress and undress. The child should be at a height that will not put strain on the caregiver. The best position for undressing and dressing is standing. The child should be encouraged to stand holding onto a piece of furniture for support when this position is possible taking their abilities and disabilities into consideration.

Encourage her to do things for herself, even if it takes longer, and give her lots of praise for every achievement, however small it is.bound to be more cooperative. Encourage her to do things for herself, even if it takes longer, and give her lots of praise for every achievement, however small it is. If the child must be dressed in bed because of their lack of mobility, try to make the bed high enough off the Proper positioning for individuals with Cerebral Palsy, floor. Of course this would also involve some side of as in most other activities, is critical to success in the side rail or support so that the child could not hurt herself dressing process. Children with cerebral palsy usually by falling out of bed. As she gets older, bigger and find dressing easier when seated on a low bench or chair. heavier, this can be a concern Depending upon the form of Cerebral Palsy the child has, their sense of balance (or lack thereof) and their ability to stand steadily may make getting undressed or National CP Day-A Good News dressing from a standing position difficult. If your child IACP(Indian Academy of Cerebral Palsy) has initiated 3rd doesn’t have the head and trunk control for this position, October as National Cerebral Palsy Day as the Birthday you may need to seat him on your lap. Positioning to of first founder president of IACP, Ms. Mullaferoz. minimize spasms will also make the process easier. Generally, undressing is an easier skill than dressing. So learning to undress should be attempted first. Many children find taking off socks the easiest skill of all. If you begin with socks, you may need to help your child by pulling the sock almost off then let him have he final success of tugging it off. As soon as your child is able to accomplish this step in the dressing process, gradually reduce your help. Then go on to the next step. If your child cannot take off his clothes himself, encourage him to help any way that he can. For example, ask him to raise his arm as you pull off his shirt sleeve or to shift his weight so you can take his pants off more easily. If your child’s movement skills are quite limited, he can still participate by looking toward the next item to be removed when you ask a question like “What comes next?”

Please logan to website of IACP iacp.co.in for more details and this year activities conducted by professionals and families concerned with welfare of children with cerebral palsy.

IFCP Newsletter Vol. 9, No. 1

India Needs Human Resources in the field of Rehabilitation of Cerebral Palsy Cerebral palsy is a childhood physical disability that occurs due to damage to the brain during gestation, delivery, post-natal period or up to the age of twelve years. The damage to brain is non-progressive in nature. Therefore, the child continues to develop after the damage. Hence the child may be retarded and may have abnormal physical signs too. The damage to the brain affects mainly the motor system. The system consists of many components and any one or more of them may get affected. The other part of the brain (non-motor system) may also get affected. Noteworthy, is the fact that there is no selective damage to one part of the motor system, as happens in polio where only anterior horn cells get affected. Therefore, the motor disability is of different types and the children may have many other associated disabilities as well due to the damage to other parts of the brain e.g. mental retardation, speech abnormalities, seizures, behavioral disturbances, squint, visual and hearing impairment. In India the awareness about this disorder is lacking in both the medical as well as social fields. Around 150 children are born every day who develop cerebral palsy. There are already 25 lakh such children in our country. The presence of one such a child who is having multiple handicaps is enough to affect the life of all the other members of the family. There are extremely few specialists in India who are dedicated or at least treating 10-20% of all their cases as cerebral palsy. There are very few centers who are providing post-graduation degrees or diplomas on cerebral palsy (developmental pediatrics) in physiotherapy, occupational therapy and special education, etc paramedical branches. And there is very little curriculum, if any, on cerebral palsy during M.B.B.S. and medical post-graduation degrees. Whereas such curriculum and many other courses are available on mental retardation in paramedical branches.

colleges want to utilize NIMS clinical material for research purpose. This is to be noted that we have an extensive and exhaustive software study of various clinical features and effect of various therapies. The professionals interested in research will be able to utilize this software NIMS needs professional hands to perform research and these courses will help in finding out the interested people. Ultimately NIMS may emerge as a center of excellence for human resource and research developmentIf the professionals of each district are trained they will immediately have these families to serve. In due course of time district cerebral palsy centers could be opened with the help of the professionals and the families so as to make the management of these children a continuous process along with maximum possible cost benefit. II. Objectives A. Primary 1. To educate and train medical and paramedical Personnel The objective of the presently designed courses is to train professionals in the field of cerebral palsy. Children and adults with cerebral palsy have multiple-disabilities like motor, mental, special sensory impairments, etc, that require management from respective specialists. Therefore, the professionals for training will be drawn from various fields as mentioned elsewhere in this course protocol. 2. Research To generate interest and to perform research in the field of cerebral palsy so as to provide best management to the child in his socio economical and geographical conditions.

B. Secondary To Develop Curriculum To develop curriculum for post-graduation in the field of developmental physical medicine, occupational medicine, special sensory disabilities and post-graduate In India there are very few centers that are dedicated diploma in developmental pediatrics, orthopedics and to manage cerebral palsy. They are able to cater to just neurosciences. 1% of the cerebral palsy population of India with the 2. To Develop Skilled Human Resource available limited resources, and are not in a position to To develop skilled human resources for district cerebral provide very comprehensive training, which includes palsy centers. medical, paramedical, education, habilitation and vocation. V. Types Of Training Courses There will be following two groups of the candidates A much more painful state of affair is that many centers depending on their specialization: in India combined cerebral palsy with mental retardation. This, in fact, is not correct because around Group One- Medical doctor (Pediatrician, Neurologist, 50-75% children with cerebral palsy have fairly good Neurosurgeon, Orthopedic Surgeon, Plastic surgeon), mental (higher cognitive) functions. They should be Physiotherapist, Occupational therapist habilitated with normal children. Group Two- Speech therapist, Special educator, Clinical The addresses of thousands of families having children psychologist, MSW, Dietician, Vocational counselor, with cerebral palsy and hundreds of medical and Dentist, Ophthalmologist, Gynecologist, General paramedical people who are willing to serve these Physician, Others children from each district of our country are available A. Cerebral Palsy Orientation Course with us. Infact these professionals from various places B. Cerebral Palsy Basic Module Course in India are interested to come to NIMS for training in C. Cerebral Palsy Certificate Course this subject. Some of the professionals from different Cerebral Palsy Fellowship

IFCP Newsletter Vol. 9, No. 1

Indian International Institute for Cerebral Palsy (An association and center affiliated to IFCP, Hyderabad) Aims & Objectives at national and international level 1. To provide medical, surgical, ADL, social and vocational habilitation to the children and adults with cerebral palsy so as to bring them to main stream of life. 2. To develop and provide technical assistance to existing cerebral palsy institutes in all the districts of the state. 3. To develop and assist existing Parents Association for Cerebral Palsy,Academy of cerebral palsy and many such associations/organizations etc.. 4. Academy of Cerebral Palsyâ&#x20AC;? 5. To carryout research and training for better understanding and management of cerebral palsy. 6. To bring awareness about cerebral palsy.

Intact, people with cerebral palsy can not be facilitated by the knowledge of one specialist professionals because of the greater challenge and need of multidisciplinary team. However, in developed countries they have been brought to main stream of life because of awareness, better understanding of the intricate problem, application of recent advances in the management and availability of the team. It is surprising to note that india has only a few cerebral palsy institutes and not even one professional body exclusively devoted to this. Note: USA has an professional body known as American Academy of Cerebral Palsy and developmental medicine since 1946. In india such a body has been registered recently in the year 2004 by the name indian Academy of Cerebral Palsy. In USA there are huge number of institutes that are serving these children where as in India even all the metropolitan cities do not have such institutes.

Introduction Magnitude of the problem and need of an institute - India with a population of thousand million is having roughly 40 million children and adults with cerebral palsy (3 to 6 per thousand live births who are dependent, partially or fully on their family members. It means indirectly 40 million families (25 million families multiplied by average 4 member family = Presently very small number, 1 - 2 to Indian population of 1.20 core (1.25% of population ) are affected. cerebral palsy, is catered by the institutes located in a few cities. Even in these cities also only a few institutes have full Not only this negligence of these children and adults with facility under one roof. There is a huge loss of time, money disability is a violation of human rights. Above all knowingly and energy by the cerebral palsy families in going to to allow our fellow human being to suffer physically, mentally metropolitan cities for treatment. In reality all the children and socially is Indeed inhuman act of ours. and adults can not afford the treatment and on the other side the few institutes can not deal with all the cases. These children have physical disability and many of them understand each and every thing like any other normal people. Establishment of a cerebral palsy center would provide lot of They are unable to carry out the physical activity, even the relief to the parents and would improve pathetic condition of ADL, and they are also unable to communicate with others. these children and adults. This occurs mainly because of speech problem. But also because of inability to indicate with limbs, lips, eyes or other This should be noted that many children can become self body actions. dependent for ADL(activities of daily living) and some children can be even productive to the society. However, this Notably most of them being mentally normal, understand their improvement is only possible with multidisciplinary inability. This kind of situation is indeed very pathetic and habilitation measure. looks like tying or imprisoning (physical disability) a person Requirements with normal mind and for no sin or crime of him. A. Land IFCP would feel extremely happy to receive enthusiastic Area: Sixteen thousand to thirty thousand square feet land response from many people all over the country to develop for the first phase and around the same measurement area an ideal cerebral palsy institute. for the expansion in II and III phase. Location: Preferably in the place where the environment is IFCP has received letters from many people from different healthy. It should be easily accessible from the main city and pads of the country mentioning that they are interested to nearby towns by good roads and cheaper transport. If the develop cerebral palsy institute in their state/distric|city/ center is close to the potential job places for people with locality. Members of IFCP feels extremely happy to note great cerebral palsy, the vocational aspect of the habilitation can motivation amongst the citizens of India towards welfare of be achieved easily. children and adults with cerebral palsy. We feel this center in This kind of location would encourage working the one who is India cannot run without the help of aids and donations. employed over there as well as the cases who are undergoing training in the institute. Therefore, we have to search volunteers, professionals who can provide honorary services or can charge nominal fee. B. Construction of the building It may be done in following phases Cerebral palsy and services in India â&#x20AC;&#x201C; I. Main therapy and office building. The children and adults with cerebral palsy have multiple II. Cottages and hostels. handicap like physical disability (100%), mental sub-normality III. Other therapies requiring larger area tracking, driving, (50%), speech difficulty, visual deficits, seizure, hearing riding, swimming etc. disability, etc. and general medical problems. C. Infrastructure for therapies like physiotherapy, surgeries They are not like children with polio, who have only one body etc. to be advanced in three phases. part (usually leg) affected with physical disability or people D.Transport with mental retardation who have only mental sub- normality. [Photos are on page number 11]

IFCP Newsletter Vol. 9, No. 1

Surgical and Rehabilitation Camp, Mandsur, Madhya Pradesh Mandsur in association with IFCP and organized in order to create NIMS organized a mega surgical cum awareness, motivate and rehabilitate rehabilitation camp. This camp was the people with cerebral palsy. Organizers involved the government officials to materialize the schemes. 1 Nearly around 50 surgeries were performed and 600 people were

Considering the benefits organizers instantly mobilized the philanthropist and government to set up permanent rehabilitation centre for the cerebral

3 4 2

palsy. The centre was inaugurated by Prof. A. K. Purohit and assured that IFCP will always be ready to extend the technical support for the organisation’s growth. given therapeutic exercises. Photo 1&2 : Inaugural of surgical cum screening camp. Photo 3:Screening children with cerebral palsy. Photo 4:Surgical Camp.

A book on Cerebral Palsy, Gyan Kosh, a Pehla Vijaya Kadam

Detailed review on page no. 8

From: Indian Family of Cerebral Palsy 408, Amrut Apartments, Phase II Kapadia Lane, Somajiguda, Hyderabad 500 082. AP. India

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Printed, published and edited by Prof. A.K. Purohit onbehalf of Indian Family of Cerebral Palsy, Hyderabad. Designed and printed by : Chandraprabha Graphics, Cell : 9849988999. email : parasrj@yahoo.com