Monthly Archives

December 2019

INDIA MS PERSON OF THE YEAR 2019

By Delhi, General No Comments

INDIA MS PERSON OF THE YEAR! 2019 Group Captain Prabal Malaker

A retired Indian Airforce Test Pilot who has flown almost every aircraft in the Air Force inventory in his time from MIGs’, Jaguars’, and Mirages’, to large transport carriers like the Avro and AN-32. He is a qualified flying instructor, who has imparted training to several young pilots.

His message to fellow MS persons is very straight forward, “If you have a problem, accept it. Work within those challenges and carry on with life. Keep your mind strong and paths will open up”, says a 63-year-old Multiple Sclerosis (MS) person, who has never learned to give up against all odds.

Life seemed to be going well until August 1998, when he was diagnosed with the progressive form of Multiple Sclerosis. He had a near-death experience when his plane, upon landing caught fire. Neurologists said that this could have possibly triggered off an autoimmune response to cause MS. In 1999, he was permanently downgraded from flying and his career came to a standstill. He had to retire from active service at the young old age of 52 years!

This was the time when he was introduced to MSSI Delhi by none other than Mrs. Sheela Chitnis, Co-founder of MSSI, by his sister Gopa who was living in Mumbai at that time. He joined the Delhi office as a volunteer to serve many other people like him. He has been in a leadership role and together with a team of some very dynamic volunteers who work shoulder to shoulder to improve the lives of people living with MS. He has been instrumental in setting up systems and procedures for smooth execution of projects, services, and initiatives that are offered to registered members of the society within Delhi NCR.

Prabal is a foody and a movie buff, however, going to movie halls and restaurants in a wheelchair was becoming a challenge since most of these places were not handicap friendly. He decided instead of getting stuck in the house and giving up all the things he enjoyed he would embark on a single point mission; To bring about change in movie halls and restaurants so that a wheelchair user could enjoy barrier-free access. Due to his single-handed and persistent effort, the Disability Commissioner has served notice to Movie Hall Operators which includes PVR, INOX, and Cinepolis A notice has also been served to 480 restaurants and the hotel of Delhi State to conform to the harmonized guidelines of barrier-free access for PwD.

Being an avid traveller, he has conducted accessibility audits for hotels and tourist sites in Jodhpur, Udaipur, Ranakpur, Sarnath, Varanasi and Sri Lanka for a Cox & Kings Accessible Holiday segment called Enable Travel.

He heads the advocacy arm of the MSSI Delhi chapter and has been engaging with the Delhi State Disability Commissioner on a regular basis to bring about change in policy and assessment guidelines for disability and advocates for the right of people with Multiple Sclerosis.

We wish him good luck and good health always!

Face to Face Programme

By Chennai No Comments

MSSI – Chennai Chapter’s monthly meeting “Face to Face” Programme was a Christmas Celebration on 22.12.2019. It started with a welcome address given by the Hon. Chairperson Mrs. Ann Gonsalvez and then it was handed over to BNY Mellon volunteers.  Mr. Joseph the BNY Volunteer organized a magic show and he introduced the magician to the audience. The Magic Show was for 40 minutes and everyone was entertained by the tricks. The entry of Santa Claus, was welcomed by one and all. Santa distributed gifts to our MSP’s Children and sweets to everyone. Then, BNY Volunteers conducted 3 games, ‘Connection Game’, ‘Jumbled Movie Name’ and ‘Chinese Whisper’. MS Person’s and their caregiver enjoyed the games thoroughly.

After that, a delicious lunch was served for one and all, which was enjoyed thoroughly. A birthday cake was cut by those who celebrated their birthday this month. They are–Ms.Anitha, Mrs.UmaMageshwari and Mr.Rajesh, by singing of happy birthday song by everyone.

The day came to a happy ending by giving gifts to our MS Person and Caregivers.

Stay Healthy and Fit for 2020

By Kolkata No Comments

A Brief Report on Medical Camp of MSSI Kolkata

MSSSI Kolkata arranged a free medical check-up camp for MS friends which came to a great success we are glad to present a brief report on that event.

Date: 22nd December 2019
Place: JMD Diagnostics, P-336, C I T Road, Scheme IV M , Kolkata- 700 054
Time: 10 AM to 3 PM

Doctors who made the event a difference
Dr.AmbarChakraborty (neuro physician)
Dr.Angshuman Mukherjee (neuro physician)
Dr.AshisDatta (neuro physician)
Dr.HimadriPathak (urologist)
Dr.NilanjanaBist (ophthalmologist)
Dr.RajibBiswas (Physiotherapist)

Prime sponsor: MSN Laboratories
Logistic support: JMD Diagnostics
Highlights
In spite of an extremely chilled winter morning, the camp started on time. JMD Diagnostics was ready with fully equipped, disinfected chambers with all necessary requisites needed for patients check-up. JMD staffs were always there to pay kind attention for the comfort of MS friends. JMD also provided wheelchairs as and when required. A light refreshment was arranged by JMD authority to energise the participants.

Doctors examined the patients, discussed and advised on their problems, prescribed for required clinical examination and medicine. All clinical tests including MRI Scan were done free of cost for all MSPs. MS friends and their caregivers were contented to get the opportunity for having a free medical check-up on different problems under one roof.

Mementoes were gifted to the doctors on behalf of MSSI Kolkata as token of appreciation. The sumptuous lunch box was provided to all participants. Conveyance expenses were reimbursed to MSPs.

MSSI Kolkata is extremely grateful to Dr.AmbarChakraborty under whose leadership the event took a great shape. We are also grateful to other doctors who gave their precious time on a Sunday morning for us. We are thankful to JMD Authority and MSN Laboratories for their support to the benefit of MS friends.

Disability Week Bengaluru Chapter

By Bengaluru No Comments

As a part of Disability Week Bengaluru Chapter showcased the #My Invisible MS campaign photographs at ANZ, Bengaluru. More than 500 people visited the kiosk and Shankar Subramanian gave a talk on disability etiquettes and invisible disabilities.

 

Medical Seminar at Kokilaben Hospital

By Mumbai No Comments

MSSI MUMBAI in association with KDA Hospital & Medical Research Institute had organized Medical Seminar on Saturday, 7th Dec. 2019, from 1.30 p.m. to 5.00 p.m. This was organized mainly to create awareness about MS for General Practitioners and other Health Professionals so that to be able to reach maximum number of MS patients, through GP.

The program started with the introduction and overview of Multiple Sclerosis by Dr. Mohit Bhatt, Director-Neurosciences & Movement Disorder Specialist, KDA Hospital.

Mrs. Sheela Chitnis gave a presentation about her 35 years journey of MSSI. She mentioned about the challenges she faced in the initial years at & various achievements throughout her journey.

Neurologists Dr. Jayanti Mani, Dr. Sunita Iyer, Dr. Annu Aggarwal, Dr. Tushar Raut gave presentations on various aspects of MS & Physiotherapist Dr. Navita Purohit, spoke about “Rehabilitation in MS”

International Day of Persons with Disabilities

By Delhi, General No Comments

International Day of Persons with Disabilities is an international observance promoted by the United Nations since 1992. It has been observed with varying degrees of success around the planet. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of life. Each year the day focuses on a different issue. This years theme is, “The Future is Accessible”.

As a part of the national advocacy action plan we had identified the need to address the poor understanding of MS among external stakeholders, disability groups, government, media, and the general public. MSSI members, volunteers and persons with MS along with their caregivers participated in the Symbolic Walk to Freedom that started from the iconic India Gate in the capital city of New Delhi to commemorate the International Day of Persons with Disabilities. This event was organized by NCPEDP and the America India Foundation. Before the walk, MSSI’s India MS Person of the year, 2019 Gp. Capt. Malaker, along with members of other newly recognized disabilities were invited on the dias to release the blue and yellow balloon as a symbol of freedom from the bondage which is social, psychological, societal and individual. There was a gathering of nearly 5000 people and we were able to create a lot of visibility and awareness about Multiple Sclerosis. We gave away pamphlets with information about MS & MSSI. As a way to create awareness, we displayed placards with slogans that convey the need of the hour for Multiple Sclerosis which included Know Multiple Sclerosis, Change assessment guidelines, No Data on Multiple Sclerosis, No research, Reduce cost of Treatment.

Ironically even though the theme is Future is Accessible, that is not the reality on the ground for a person living with MS in India because they are still struggling with inappropriate assessment guidelines, lack of data of prevalence of MS in India, no research on drugs and treatment that might work. All of this leads to lack of access to schemes, social benefits, insurance and employment. We have a lot to do to change that.

Participating at national level events provided impetus to our work in the area of advocating for the rights of persons with MS.

REPORT ON WORLD DISABILITY DAY

By Chennai No Comments

International Day of Persons with Disability was observed on the 3rd of December 2019. The theme for this year was “The Future is accessible.”

Marina beach is one of the longest beaches in Chennai city. The Greater Chennai Corporation in observing the International Day of Person with Disabilities based on the theme “The Future is accessible”. They organized an ‘accessible walkway’ in Marina Beach for the disabled people to Experience the roaring waves of the Bay of Bengal.

The event was inaugurated by the Greater Chennai Corporation Commissioner, Mr.G.Prakash and State Disability Commissioner Mr. Johny Tom Varghese. ‘3 Specialized Wheel Chairs’ were provided by Greater Chennai Corporation to take a ride along the sands and reach the seashore safely and conveniently.

Disabled people came from different organizations and MSSI to experience the seawater. Chennai Chapter team took part in this initiative and a few of the MS Persons accessed the walkway through the beach wheelchair and enjoyed a few moments in the seawater. A dip in the seawater was the joy for many differently-abled persons.