Spinal Care India Report 2012

7/30/2019 Spinal Care India Report 2012

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Spinal Injury Association India Toll Free 1800 425 1210

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

Toll Free 1800 425 1210

Manoj Kumar is back in

school after a high-level

spinal cord injury at six.

Report

2012

Spinal Care India www.scribd.com/[email protected]


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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 in-

patient 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.

Leadership

S Ramakrishnan, Founder & President of Amar Seva Sangam, which has

completed 30 years, has not let a devastating neck-level spinal cord injuryimpede 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.

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

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


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Discovering Kennedy

Kennedy exemplifies the problem of `physically challenged

people staying hidden ridden with problems. Ground-levelsupport 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 heart-

rending. 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 onthe 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 inthe course of 2013. Kennedy is a window to our daunting

challenges.

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

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.

Minnur Magadhevan, a paraplegic following a fall into a well

in 1990, shares his long years of living with a spinal cordinjury and becoming a successful small businessman with

persons undergoing rehabilitation.

Experience Sharing


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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 1210stays a Pan-India number.

S p i n a l C a r e I n d i a

1800 425 1210

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

[email protected]. On a due diligence, we would

add your organization to the list. We look forward to havingmore names on the list, as the need is deep and

widespread across 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 physicallychallenged persons to get directly involved.


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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 offun, culture and sports.

We hope to make the content even better as we go along.

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

l imited hand and

finger functions.

S p i n a l C a r e I n d i a

SMS Alert ServiceCommunity Leadership Program

As part of the continuing efforts to create a vibrant network

of persons with spinal cord injury, a community leadership-

training 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 (Livingmust have a meaning. There must be an imprint to show that

you lived a meaningful life).

May 26 is the birthday of Dr Mary Verghese who led a trail

blazing life after the spinal cord injury in the early fifties.

May 26

Ability Day


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Health Calls

In a first of its kind, Spinal

Care India organized a tele-

conference 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 PMRDepartment 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 thiswas chosen as the topic for the first call. The tele-

conference 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 Hindiother languages as well and the calls will cover different

topics by rotation.

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.

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 wasan 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, whowas 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.

This is an initiative started by the Nina Foundation, and

endorsed, appreciated and adopted by Spinal Care India.

June 25

Spinal Injury

Awareness Day


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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

[email protected] if you wish to receive bookmark

for distribution.

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.

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 haveno reach to online forums are provided prints for access.


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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.

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 approachmust be used to improve the quality of life in other ways and not wasted in this so-called treatment.

Stem Cell & Spinal Cord Injury Health Care Series

Skin Care Health Care Series

Pillars of Skin Care

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.

1

Position Change:Turning of position every two

hours when lying down in any other position

(supine, left side and right side). This provides

pressure relief and helps maintain skin quality.

3

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.)

2

Practice Everyday: Check your skin,

especially lower back and buttock areas. every

morning using a mirror (do this yourself or use acare giver, if needed) and apply a few drops of

coconut oil.

4

Good

Nutrition

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.

Spinal Care India Report 2012

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