Veezhvadhil vettkam illai. Veezhindhu kidapadhudhan vettkam There is no shame in falling.

What is shameful is staying fallen

S Ramakrishnan, Founder & President, Amar Seva Sangam

Report 2012

Manoj Kumar is back in school after a high-level spinal cord injury at six.

Toll Free 1800 425 1210

Spinal Care India spinalcareindia@gmail.com Resources www.scribd.com/SpinalCareIndia.

Spinal Injury Association India

Toll Free 1800 425 1210

About us Spinal Care India is an aspiring Pan-India organization that would support persons with spinal cord injury / disorders to lead a vibrant life with quality rehabilitation and guidance. We hope to work with different groups doing work in this cause in a few pockets across India.

Initiative Dr Mary Verghese was an alumnus of Christian Medical College, a paraplegic due to an accident in 1954, a great surgeon from the wheelchair and the person who nurtured the specialty Physical Medicine & Rehabilitation to become an inpatient unit. She also set up Indias first Rehabilitation Centre in the CMC Bagayam campus in Vellore in 1963. Spinal Care India is an initative stemming from the efforts of the Mary Verghese Trust for Physically Handicapped. Her life work gives strength and meaning to many-a-life in India.

We seek to Guide persons with spinal-cord injury Inform, educate and create awareness Support in rehabilitation Influence societal attitudes proactively Link with experienced peer network

Leadership S Ramakrishnan, Founder & President of Amar Seva Sangam, which has completed 30 years, has not let a devastating neck-level spinal cord injury impede his life. He is a role model. To understand the full gamut of his work, visit www.amarseva.org. He maintains a meticulous diary with names and numbers that are regularly updated. Spinal Care India functions under the inspiration, guidance and leadership of Ramakrishnan, who has been at networking spinal injured persons for at least a couple of decades now. Spinal Care India Mary Verghese Trust for Physically Handicapped Amar Seva Sangam PMR Department, Christian Medical College, Vellore Mary Verghese Institute for Rehabilitation PMR Department, St Johns, Bangalore Partners Plegia.org Rehabilitation Department VHS, Chennai The Ability People, Visakhapatnam Polagam Foundation the ganga trust

Spinal Injury Association India

Toll Free 1800 425 1210

Direct Role In Ensuring Rehabilitation Babu, Chennai Kennedy, Nettur Loganathan, Villupuram Ashok, Chennai Krishna, Andhra Pradesh Sushree, Orissa Venkataboopathy, Theni Irfan, Karur Srinivasan, Bangalore Muthu Shanmugam, Chennai Sujata, Chennai Selvakumar, Chennai Discovering Kennedy Kennedy exemplifies the problem of `physically challenged people staying hidden ridden with problems. Ground-level support persons reckon he is actually among the better off in terms of care. Kennedy lives in Nettur village near Alangulam in Tirunelveli district in Tamil Nadu. His experience from the time of a spinal cord injury about five years ago is heartrending. Afflicted by pressure sores the biggest enemy of persons with spinal cord injury Kennedy had lost the notion of sitting. His sisters education suffered and his elderly mother had multiple challenges. Deep support for over a year at the Amar Seva Sangam helped alleviate his situation to an extent. He reached us on the Spinal Care India Toll Free. He was transported safely (to prevent aggravation of his pressure sores) to Vellore and admitted in the Rehab Centre. A five-month treatment and training at CMC helped to almost settle his pressure sore problem and enabled him to sit comfortably. He was thrilled, became fitter and was hoping to go back and start a renewed life. But woes at the Katpadi railway station and an ill-advised trip to Chennai have pushed him back; he is recovering well from a reopened sore. We hope he will be back on his wheelchair and in avocation in the course of 2013. Kennedy is a window to our daunting challenges. Core Group A small group of eight persons meet regularly and stay in touch to give shape to our ground-level work in Tamil Nadu, which is the focus initially. We hope the work and its effect will encourage similar initiatives in places where there is none. Gradually, we plan to reach out to other places in terms of ground level work. There are a few initiatives that are already Pan-India in nature. Experience Sharing

Minnur Magadhevan, a paraplegic following a fall into a well in 1990, shares his long years of living with a spinal cord injury and becoming a successful small businessman with persons undergoing rehabilitation.

Spinal Injury Association India

Toll Free 1800 425 1210

1800 425 1210

Spinal Care India
A spinal cord injury could significantly affect the functions of hands, fingers, legs, bladder, and bowel, mobility, sexual functions and the ability to conceive children. Yet, a quality life is possible with proper rehabilitation. Running For Ability, an initiative of Spinal Care India, showcases this prospect. It seeks to spread the message that if ever there is a need for guidance on rehabilitation, please call the Spinal Care India Toll Free Number. In the first effort, a 52-member team, including doctors, therapists, students, social workers, corporate staff and spinal-injured persons participated at The Wipro Chennai Marathon held on December 02, 2012. A team will take part under this banner to spread awareness about the cause in more such events. We hope to encourage more physically challenged persons to get directly involved. Quality Rehabilitation Centres Spinal Care India will strive to identify quality institutions that can offer quality rehabilitation. Based on certain absolute minimal requirements, we at present recommend five places: Physical Medicine & Rehabilitation (PMR) Department, Christian Medical College, Vellore Mary Verghese Institute of Rehabilitation, Bagayam near Vellore. Pune Paraplegic Centre, Kirkee, Pune Indian Spinal Injuries Centre, New Delhi PMR Department of St Johns, Bangalore We are hearing of a few other institutions that offer rehabilitation. Please do get in touch with us by emailing services for persons with spinal cord injury / disorders to spinalcareindia@gmail.com. On a due diligence, we would add your organization to the list. We look forward to having more names on the list, as the need is deep and widespread across India. This is our first major initiative. 1800 425 1210 is the Toll Free Number for Spinal Care India. It has been in place for 16 months now. We have had about 200 unique callers. There are many repeat callers seeking interaction and guidance on a variety of issues. On an average at least an hour a day is spent in interacting with SCI persons. If it is not possible to take the call on receiving, it is returned within 24 hours normally. We are looking at ways to spread awareness of the number and going about it in a measured manner. We welcome ides and support in reaching the number far and wide. The Toll Free 1800 425 8911 of the Ability People, Visakhapatnam, has been a welcome addition and serves as a dedicated line for callers from Andhra Pradesh and Orissa. 1800 425 1210 stays a Pan-India number.

Spinal Injury Association India

Toll Free 1800 425 1210

SMS Alert Service Nelson Mandela writes of his 27-year imprisonment: In prison, routines are important. That is very true for a spinal cord injured person. Disciplined living will mean improved quality of living. There are several aspects that require to be practiced as daily routines. To help provide alerts on dos and donts, an SMS service has been started. It will be more active from 2013. With the base of numbers crossing 1600, we are working on more efficient ways to send out the messages. Once that is settled, there will be an improvement in guidance and also an effort to get into local languages.

Members Meet 2012

Chennai

Layout: Manigandan, a tetraplegic with very limited hand and finger functions.

Networking Meets In an effort to improve interaction between persons with spinal cord injury / disorders, a program to have systematic meetings at least once a year in different parts of Tamil Nadu is underway. Luckily, we have the pioneering Rehab Mela in Vellore and similar initiatives on a smaller scale at Amar Seva Sangam, Ayikudi and places such as Ambur, Tiruvannamalai, Vellore and Arni. Spinal Care India has initiated meetings in Chennai and Coimbatore from 2011. Villupuram has been added to the list in 2012 and at least four other locations are on the anvil in the first six months of 2013. In Chennai, the 2011 meet brought together 19 while the 2012 meet saw a doubling of that number. These are encouraging signs. The meets involve a healthy mix of medical check-ups, review by quality therapists, informal interaction, guidance on skin care & the stem cell hoax apart from other issues, experience sharing anchored by Social Workers and a bit of fun, culture and sports. We hope to make the content even better as we go along.

SMS Alert Service

Spinal Care India

Community Leadership Program As part of the continuing efforts to create a vibrant network of persons with spinal cord injury, a community leadershiptraining program was organized by the team of Social Workers at the Mary Verghese Institute of Rehabilitation. A group of ten alumni attended the well-structured program spread over two days in July 2011. This provided an opportunity to listen to persons who have spent long years in community work. Of particular interest was the real-life experiences shared by Chandrasekhar, Founder of Udavum Ullangal. Murugesan, Social Worker, CMC, left an indelible impression with his telling remark: Vazhvatharkhu Artham Vendum, Vazhndhatharkhu Adaiyaalam Vendum (Living must have a meaning. There must be an imprint to show that you lived a meaningful life).

May 26 Ability Day

May 26 is the birthday of Dr Mary Verghese who led a trail blazing life after the spinal cord injury in the early fifties.

Spinal Injury Association India

Toll Free 1800 425 1210

Health Calls In a first of its kind, Spinal Care India organized a teleconference call to connect persons spread far and wide in Tamil Nadu in a single call. This has been done twice so far and has been received well. Dr Anand Viswanathan, a member of the PMR Department of CMC, Vellore, addressed the call. 148 persons with spinal cord injury across Tamil Nadu were connected in a conference call on skin care in October 2011. Only 100 numbers were connected, as this was the first attempt. Skin Care is of utmost importance for a person with spinal cord injury, if he/she is to sit, stand, walk, work and live actively at home and in the community. Lack of skin care is most prevalent problem. Hence this was chosen as the topic for the first call. The teleconference was received well and enabled low-cost access to quality medical views. Our second call in July 2012 effectively reached out to about 425 persons with spinal cord injury in different parts of Tamil Nadu.Dr Anand spoke for 30 minutes on bladder management, an important aspect in the day-to-day life of a spinal injured person. He also answered a variety of questions for about 90 minutes. CMC Vellore has agreed to support this initiative in Hindi other languages as well and the calls will cover different topics by rotation.

Enhanced networking Spinal Care India supports enhanced networking by key persons involved in ground-level rehabilitation. They have joined all our meets at different locations. One of them also visited the meet organized by The Ability People in Visakhapatnam. There was an unexpected blessing from that visit. The Ability People, founded by Dilip Patro a person with neck level spinal cord injury actively works with physically challenged persons. It organized a get-together of spinal injured in Visakhapatnam. In an effort to establish links and understand issues in a different setting, Kannadasan, Social Worker at the Mary Verghese Institute of Rehabilitation (Rehab), was requested to attend the meeting. He came across ten-year old Yarni Krishna, a joyous boy, who was struggling with the constraints imposed by his spinal cord injury and lack of rehabilitation. His position was aggravated by ill-informed treatment of pain, which resulted in skin damage in both his legs. Krishna was bought to the Rehab in Vellore. Hailing from a poor background and a small village, Krishna received quality and wholesome support in rehabilitation. It was not a one-way street. He added his vibrant joy to the patients, relatives, doctors, therapists and other staff at Rehab. Deftly mobile using crutches and callipers, Krishna is now in school. Dilip has promised to closely track his progress and ensure he gets the best. This was an unexpected blessing from what started as a routine exercise.

Membership Form A Spinal Care India membership form has been developed to capture information at different stages of a persons life before and after a spinal cord injury / disorder. We have made it exhaustive, as we wish to have deep insights about the members. This is a must as Spinal Care India aspires to be an intelligent organization in order to achieve its goals. Cognizant Technology Solutions is helping develop software to record and analyse the information.

June 25 Spinal Injury Awareness Day

This is an initiative started by the Nina Foundation, and endorsed, appreciated and adopted by Spinal Care India.

Spinal Injury Association India

Toll Free 1800 425 1210

The Rehab Letter The Rehab Letter is a quarterly publication of the Spinal Care India. At present, it has a focus that is primarily on the alumni of the Dr Mary Verghese Rehabilitation Institute. But the vision is to expand the horizons of the publication to cover rehabilitation tales from different parts of the country. This publication is intended to educate, inform and inspire. Bookmark In a bid to spread awareness of the Toll Free Number and to give a quick guide on skin care, a bookmark has been developed that is given to persons undergoing rehabilitation as well as to persons who come for meets in different locations. Image of the bookmark is provided for reference. We would like institutions to approach us (even as we are gradually approaching) and give out this useful handout to persons under their care. For the present, this is in English, but we will have versions in Hindi, Bengali, Telugu and Malayalam out in a couple of months. Send us an email to spinalcareindia@gmail.com if you wish to receive bookmark for distribution.

Posters There are many who are living well with a spinal cord injury. Each such person is a source of immense motivation for the newly injured, reckoned conservatively at 20,000 a year in India and those sulking after the injury. In an effort to systematically chronicle their life stories, we are gradually preparing posters. Our first poster could only have been S Ramakrishnan, Founder & President of Amar Seva Sangam and leader of Spinal Care India. We will be stocking them for easy online access and provide links via Facebook and email for starters. Persons who have no reach to online forums are provided prints for access.

Spinal Injury Association India

Toll Free 1800 425 1210

Education Material For persons with spinal cord injury, it is important to be well informed based on credible sources about aspects such as skin care, bladder management, bowel care, exercises, sexuality, procreation, mobility aids, spasticity, social entitlements, investment, insurance, legal rights and efficacy of alternative forms of treatment. To help in this regard, we have started the process of developing quality education material based on inputs from top experts in the field of holistic spinal injury rehabilitation. For starters, we have a detailed document on Skin Care, as it is the most important aspect to live well after a spinal cord injury. Another is on stem cell based options, as it is a big fraud going on now, being wrongly promoted as a treatment option. Basic research is welcome though. World-renowned experts have indicated to Spinal Care India that, as of now, such research is at a very early stage. A small snapshot from the material on skin care and stem cell options is provided for reference.

Stem Cell & Spinal Cord Injury

Health Care Series

Stay clear of stem cell based approach to treat spinal cord injury - Professor Alan Mackay-Sim
There are no stem cell treatments in the world today that have been fully tested in all stages of clinical trials. Part of the process of clinical trials is to report the outcomes and open them to public scrutiny for others to judge. Yet treatments' using stem cells for persons with SCI are taking place in several countries, including China, Russia, Brazil and India. Such treatments are not based on scientifically proven evidence that stem cells make a difference, partially or wholly, which means risks and benefits remain unproven. We know illnesses and injuries can change with time and that a few improve without treatment. There is no concrete evidence that it is stem cell treatment that leads to improvement of any sort in a person with SCI. Clinics offering stem cell therapies' do not state what cells they are transplanting, do not provide evidence of how the cells work in animals and whether they work in humans. Statements and testimonials from patients placed in webstes/newspapers are not evidence'. In this backdrop, it is important that every person with SCI adopts a rational approach. I understand several persons with SCI are spending vast sums on stem cell treatment in the hope of improvement. This is a sad state of affairs. Persons with SCI must not go in for stem cell based treatment in any part of the world, as there is a long way to go to have a scientifically proven approach that also works. Research is at a very early stage. The money that is or could be spent on stem cell approach must be used to improve the quality of life in other ways and not wasted in this so-called treatment.

Skin Care

Health Care Series

Skin-care is an important aspect in the lives of persons with spinal cord injury. To safeguard our health and to sit, stand, walk, work and be active in the community and in the family, good quality skin is a must; the more so for skin in the areas of the body where you have no touch or pain sensation or only limited sensation.

Pillars of Skin Care

1
Push Up: Doing a push up every ten minutes for 20/30 seconds when sitting anywhere, on any surface and irrespective of what you are doing. Sitting without doing a push up is like drunken driving. Prone Preferred: Lying down in prone position for as long as is possible, especially at night, as it is the safest. (Persons with cervical level injury must check with their doctors whether this ok.)

Good Nutrition Practice Everyday: Check your skin, Position Change: Turning of position every two especially lower back and buttock areas. every hours when lying down in any other position morning using a mirror (do this yourself or use a (supine, left side and right side). This provides care giver, if needed) and apply a few drops of pressure relief and helps maintain skin quality. coconut oil.

Spinal Injury Association India

Toll Free 1800 425 1210