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INDIA MS PERSON OF THE YEAR 2019

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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!

REPORT ON WORLD DISABILITY DAY

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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.

Face to Face Programme

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MSSI  Chennai Chapter monthly “Face to Face” Programme held on 23-11-2019 started with the Meditation session by Dr. R.J Kalpana on the topic “Learn to meditate, Heartfulness Meditation with Yogic Transmission”. It was a 40-minute online session. Our MS Persons and their caretakers enjoyed and felt relaxed at the end of the meditation session which in turn helped them to stay active for the next session.

The guest speaker for the programme was Dr. Ravi Samuel, one of the Chennai’s eminent psychotherapists, who has over 20 years’ experience in treating people with emotional, behavioural, psychological, psychiatric problems, corporate mental health, etc. He has had professional training in Cognitive Behavior Therapy by Mr. Allan Davidson, Cognitive Behavior Therapist at Dept. of Clinical Neurology, Institute of Neurology and National Hospital for Neurology and Neurosurgery, London. He addressed our MS persons and their caregivers on the topic “ Caring for the Carers”.

He focused on mental well-being, for MS persons and Caregivers and how to handle the emotional effects, organize and fight within ourselves. He explained the healing process which was very informative and useful for our caregivers as they were able to relate it and make it has an interactive session.

As a coping mechanism, the counsellors Ms. Gayathri and Ms. Kavya who teamed up with Dr. Ravi Samuel taught us few breathing techniques. There was a question and answer session where our MS persons and caregivers clarified their doubts.

A birthday cake was cut by those who celebrated their birthday this month. They are  – Mrs. Ann Gonsalvez, Mr. Sivakumar, Mr. Raghunathan, Mrs. Lucy Nathan and Ms.   Keerthana by singing of happy birthday song by everyone.

Delicious snacks and tea brought the meeting to a close.

BNY Mellon Mega CSR Day

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November 4, 2019: is marked as Mega CSR Day for BNY Mellon, our CSR partner in Chennai.  BNY Mellon organised a walk for creating awareness on “Multiple Sclerosis” inside DLF IT park campus which houses more than 21 IT companies.   More than 350 of BNY Mellon employees took time off from their daily routine and volunteered to walk along with our MS persons and their caregivers by holding placards and banners of MSSI, which spoke volumes for Multiple Sclerosis.

We were able to create awareness among the young employees of 21 IT companies, maybe 5000 or more who witnessed the walk.

Diwali Celebration and Caregivers Month

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MSSI – Chennai Chapter monthly meeting “Face to Face” Programme was a Diwali Celebration on 19.10.2019. Games like identifying the personalities, dumb charades and let’s talk in Tamil, was organised by our CSR partner – BNY Mellon volunteers. The game of housie was also part the game for the evening and for every game prizes were given to the winners.

The month of October is also dedicated to our caregivers. In order to give tribute to caregivers, a video was screened on their beautiful moments with our MS Person. To honour the Caregivers for their timeless efforts in taking care of their loved ones, we gifted the spouses, the siblings, the parent, the children, the friend of the MS person.

• Mr. Anzar – Best Care Giver Spouse – Msp. Vajiya banu
• Mrs. Shaheem – Best Care Giver Spouse – Msp. Mohammed Wassim.
• Mrs.Parvathi – Best Care Giver Mother –Msp. Monalisa
• Mr. Sadhasivam and Mrs. Santhakumari – Best Care Giver Parents –Msp. Smitha
• Mrs. Subashini – Best Care Giver Sister and Friend –Msp. Uma Mageshwari
• Ms. Roshini – Best Care Giver Daughter –Msp Farzana
• Mr. Utharanaryanan – Best Care Giver Son –Msp.Saraswathy

A birthday cake was cut by those who celebrated their birthday this month. They are Ms. Kalaivani and Mrs. Parveen, by singing of happy birthday song by everyone.

The meeting ended with a high tea.

The evening came to a happy ending with MS person and Caregivers, by distributing Diwali gifts and sweets to each family and wishing them Happy Diwali.

Awareness Programme at Colleges

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The awareness programme on Multiple Sclerosis was conducted in three colleges on various dates in the last month.

1. Loyola College, Chennai.
2. Mar Gregorius College, Chennai.
3. Dharmamurthi Rao Bhahadur Calavala Cunnan Chetty’s Hindu College, Pattabiram, Chennai.

The main aim of this awareness programme was to make young students aware that there is an autoimmune disease called “Multiple Sclerosis”, also called “Crippler of the Young Adults”. Apart from that, the introduction of the Multiple Sclerosis Society, Chennai Chapter, that looked after the welfare of the persons affected by it and its activities.

So far we have covered Social Work Colleges. The students actively participated during the session and leaflets were given to them to study more about this orphan disease. Many have opted to do internships with us.

Face to Face programme

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MSSI – Chennai Chapter monthly “Face to Face” Programme was held on 27-07-2019. The Chief Guest for the day was Dr. Alpha Khakhar practising Gynecologist, Obstetrician & Gynecologist and a Urogynecologist with an experience of 18 years.

Dr. Alpha Khakhar addressed the gathering on the topic “Multiple sclerosis and Incontinence”. She explained the connection between the brain and bladder. She also gave a case study of an actor Ms. Selma Blair an actress who is also diagnosed with Multiple Sclerosis and lives positively with the “will power” as an example of our MSP’s. She also explained about urinary incontinence diagnosis and assessment procedure followed by the treatment process. She spoke on Diet and nutrition to try gluten-free food. And she also focused on two important aspects i.e. exercise and stress management in that she specified the “Laughter therapy”. After the session, our CSR partners – BNY Mellon volunteers conducted games for the MS person and caregivers, followed by our MS persons Ms. Banumathy, Ms. Farzana, Ms. Gomathi birthday celebrations. Everyone had delicious Snacks and the meeting came to a happy ending.

Face to Face Program held on 22-06-2019

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The Chief Guest for the day was Dr. Prithika Chary, Consultant Neurologist & Neurosurgeon and Chief Neurologist at Kauvery Hospital, one of the largest hospitals in Chennai. She was the first and only lady in India to be qualified as both Neuro physician and Neurosurgeon.

Dr. Prithika Chary addressed the MS persons and their caregivers on the topic “Current treatment options for Multiple Sclerosis.” She started the session by giving a brief introduction about the MS and followed by the treatment process for the MS by explaining in detail about the Medicines available for MS and the treatment for each type of MS. She also focused on lifestyle changes, diet, nutrition, and the importance of Physical therapy ( exercise). She shared her personal life experience with Cancer, how she survived with it and how she overcame it. The session was for 1 ½ hour. Through her life sharing experiences, she created an impactful speech to our MS person which was very motivating and inspirational for them. There were around 45 MS patients and caregivers benefited from her talk. MS persons and caregivers were very attentive and participated actively by interacting with the resource person.

5 MS persons celebrated their Birthday by cutting cakes with their other MS friends singing Happy Birthday and everyone had their delicious snacks and meeting came to a happy ending.

 

WMSD Events – Chennai

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Event 1: WORLD MS DAY PROGRAMME ON  19th May 2019

Multiple Sclerosis Society of India – Chennai Chapter  together with Merck Serono organized an Awareness program on theme of World MS Day – “My Invisible MS Symptoms”, at Hotel Savera. The Chief Guest for the program was Dr. Deepak Arjundas from Vijaya hospital.

Event 2: WORLD MS DAY PROGRAMME AT  EXPRESS AVENUE

World Multiple Sclerosis Day 2019 is on May 30, 2019, and it is the only global awareness raising campaign for Multiple Sclerosis, the world over.

This year MSSI Chennai Chapter partially sponsored by Sanofi, created an Awareness programme, in observing World MS Day on 23rd Thursday at Express Avenue Mall at 6.00 pm. The Chief Guest for the program was Ms. Dipshi Blessy from Youtube channel – PutChutney.

The awareness program was through a music performance by our MS person crew known as Q- Elements. The lead singer was an MS person, a lady of great talent.  The fantastic dance performance was by Dance studio.  A Stand-up comedy and our MS persons created the much need awareness of MS by holding the placards of the Theme of World MS Day “ MY INVISIBLE MS”. The MC for our program was one of our MS person himself, and he did a wonderful job.

Event 3: World MS Day – PRESS MEET REPORT

World MS Day observed on 30th May 2019.  To raise awareness of “My invisible MS”, Press Meet was arranged at “Chennai Press Club- Chepauk”. The press meet was addressed by Neurologist Dr. M.R Sivakumar, who spoke in detail about the diagnosis, treatment, recent developments in medicine, etc. Mrs. Ann Gonsalvez Chairperson spoke about the activities of MSSI Chennai towards the welfare of Persons with MS and establishing life- long care and support system for them. Ms. Smitha, Committee member, told the press about the need for government to acknowledge MS as Multiple Disability due to more than 41 invisible symptoms apart from the visible ones, the various barriers faced and huge restrictions in the participation of persons with MS due to the same.

It was covered by English and Tamil News, also telecasted and published on the same day as well as the next day.

  • No: of : Tv Stations7 such as Moon tv, Jaya tv, Thamarai Tv, MMTV, IBC, TNA and Polimer News.
  • No : of : Tamil papers4 such as Tamilsudar, MGR News, Dinabhoomi and Mudalseithi
  • No : of : English papers4 such as Deccan Chronicle, Indian express, Newstoday and  The Hindu
  • No: of : Malayalam papers 1 that is Mathurubhoomi

Here are the link of the newspaper.

Event 4: Awareness Programme on “Invisible Symptoms of MS at AGS Cinemas.

The video was screened on 3 AGS CINEMAS on 30th MAY, this is the poster Created by  MSSI –CHENNAI CHAPTER by using the Poster making tool from the website and collaged to raise awareness of Multiple Sclerosis and it’s Invisible Symptoms. Video attached in zip file.

 

Surya Namaskar – power for health.

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MSSI Chennai Chapter had a “Face to Face” programme on 23.03.2019. The evening started with “Meditation Session” by Dr Kalpana. Later  Dr Bashyam, who is a renowned researcher and practitioner of “Surya Namaskar” took over the next session.  He started the session with prayer. He briefed our MS persons about the importance of sunlight, vitamin D and Yoga. Deep breathing in and out, preferably on an empty stomach, is very beneficial for overall health issues.

Mrs. Hema beautifully demonstrated the 12 postures of Surya Namaskar yoga in a chair and requested  MS persons and their caregivers follow the instructions and practice the same at home to get effective results. For follow up, they are advised to show the steps in the next meeting. The MS persons were asked to volunteer to do the Gummi (a folk dance about sunlight).

The evening came to a happy ending with MS person, Mr. Arun Kumar and Mr. Kenzer cutting a birthday cake to the joyous singing of Happy Birthday by all the 50 MS persons and their caregivers.

Sumptuous snacks and tea brought the meeting to a close.