Delhi Chapter had adapted to online or virtual home visits during the COVID-19 pandemic. In the last 2 years in spite of the pandemic & lockdowns, they managed to keep in constant touch with PwMS and enrol new members. As part of their patient outreach & the ‘Know Your Member’ initiative, they resumed Home Visits in June. These visits got an enthusiastic response from the newly enrolled members who were full of questions and doubts that were gently but professionally tackled by a team of volunteers. Mary Toppo, a trained Psychologist and a PwMS herself, with a PG Diploma in Guidance and Counselling also joined them during these visits.
A Training Session on the Importance of Physiotherapy in Multiple Sclerosis Rehabilitation was conducted by Dr. Jasmine Anandabai, Principal and Associate Professor Jyotirao Phule Subharti College of Physiotherapy, Swami Vivekananda Subharti University, Meerut. She is the former HoD, Rehabilitation at Rajiv Gandhi Cancer Research Centre-Delhi, Fortis Hospital, NOIDA & Sir Gangaram Hospital, New Delhi. This very valuable workshop is conducted twice a year as training for our newly inducted PTs & OTs and works as a refresher as well as an open forum for our regular PTs/OTs. The session is conducted in the comfort of our office along with lunch & refreshment breaks. Project head Bipasha Gupta, Mridula Murgai & staff also attended the session. 17 participants from our Home Physio team also took part in the workshop.
Abhishek Trivedi, MS person member Delhi Chapter undertook the daunting task of going on an MS Awareness Drive – from Chandigarh to Kochi, covering 3100 km. His wife Richa Trivedi accompanied him on the journey. Along the way, they stopped at Delhi, Gwalior, Bhopal, Hyderabad, Bangalore and Kochi. They were met with cheers of adulation and exuberance from members, doctors and other MS persons at their halts. The Ministry of Empowerment also invited him for a meeting to convey his message on MS Disability. Abhishek and Richa were supported by MSSI Delhi Chapter in this endeavour. This highly successful MS Awareness Drive attracted a lot of media attention and was covered by NDTV India, The Times of India and Dainik Bhaskar.
On 31 May 2022 Delhi Chapter held a symposium with CRC Lucknow highlighting the various facilities and assistance schemes provided by the Govt. of India. MSSI Delhi introduced Multiple Sclerosis and the Society working for the MS. They presented their work on the support extended, advocacy, and connecting MSPs and stakeholders.
Public Awareness Programme with the Faculty & Dept. of Neurosciences All India Institute of Medical Sciences (AIIMS), New Delhi
On 30 May 2022, the Delhi Chapter conducted a hybrid programme attended by doctors, interns, social workers and people living with MS. The programme was live-streamed on the AIIMS Telemedicine YouTube page. Prof. MV Padma, Chief of Neurosciences Centre, AIIMS along with a panel of senior consultants from her Dept., Dr. Rohit Bhatia, Prof. Neurology, Prof. Ashima Nehra, Neuro-Psychology, Dr. Rajesh Kumar Singh, Neurology, Dr. A. Elavarasi, Neurology and Dr. Rajeev Agarwal, HOD Physiotherapy Rehab discussed the recent advances in treatment and management of MS. The session provided some great insights to everyone about the disease.
Under their Quality-of-Life initiative, the Delhi Chapter on 29 May 2022 organised a recreational lunch and movie outing at Select City Walk, Saket providing a delightful and unforgettable experience to about 90 PwMS and their families. The day began with games & a quiz, the launch of their free and informative 18th Annual Handbook 2022 for all MSPs in India, followed by a delicious Chinese cuisine for lunch. The movie Anek was screened in an accessible hall with a hydraulic lift; the majority of the space of the movie hall was booked for MS persons. This outing is a message to all that no disability should confine anyone at home.
We are delighted to share a video about the FREE MS HOME CARE SERVICE provided by MSSI DELHI, dedicated to FEMALE MS PERSONS who are homebound.
AWARENESS BLITZ AT HOSPITALS ACROSS DELHI/ NCR
An Awareness campaign under the theme #knowMultiplesclerosis with MSSI Info Standees was launched by MSSI Delhi for the IMSD week starting 1st February 2020.
Standees with the IMSD logo and a few lines on What is MS (in English & Hindi), along with contact details of the Delhi Chapter were placed in prominent locations at 12 leading Hospitals across Delhi NCR . These are as follows:
- The Annual Delhi Neurological Association Conference Ambedkar Hall, New Delhi from 30 Jan onwards. It was expected that up to 1000 people would attend this conference over a period of 2 days
- GB PANT HOSPITAL OPD RECEPTION
- PUSHPAWATI SINGHANIA HOSPITAL
- VIMHANS HOSPITAL INDIAN SPINAL INJURIES CENTRE
- GANGA RAM HOSPITAL
- IBS (INDIAN BRAIN & SPINE ) HOSPITAL
- MAX HOSPITAL PATPARGANJ
- MAX HOSPITAL VAISHALI, Ghaziabad
- VIMHANS, ISIC
- ARTEMIS Hospital ( Permanent placement)
- MEDANTA Hospital Gurgaon ( LED Screen )
- APOLLO Hospital
We have got 4 new enrolments in the month of February.
As part of INDIA MS DAY 2020, Delhi Chapter organized a Health Check Up camp at Indian Spinal Injuries Centre Hospital, Vasant Kunj on Thursday 6th February 2020 between 12 Noon – 5 pm. This was for all PwMS and their caregivers at the end of a long & bitter winter!
The programme included exclusive one on one free consultations with related to medicines, treatments, management of MS in daily life with the following specialists, Neuro-physicians, Urologist & Internal Medicine on issues of general health, MS / neurological issues, pain management, urine /stool problems etc.
Patients started trickling in from 11.45 AM onward. By 1:30 PM almost all the PwMS attending had registered.
All the MS patients consulted the neurologist & urologists. Based on their requirement, some were referred to the other specialists as well.
100 packed boxes of Lunch / Refreshments were arranged for MS Persons & the caregiver. A conscious effort was made to help out MS families wherever possible, therefore the lunch box was prepared by the family of a PwMS (Ms. Richa Bhambri )- the packed professionally home-style meal was enjoyed by all and shared with the staff of ISIC as well. .
The programme was attended by 28 PwMS accompanied by their caregivers, volunteers, EC Members & staff.
We were approached by several visitors to the Hospital, and pamphlets & information was distributed. We also identified one new MSPerson who is now getting registered with the Delhi Chapter.
GRATITUDE TO Volunteers Ms Ameeta Gupta, & thanks EC Members Milly Murgai & Pinky Hora for conducting the registrations in a systematic & efficient fashion.
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!
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.