An Entertainment program – Virtual Concert was held on Oct 2nd 2020 to entertain all MS persons & their family members to bring a change for them during the pandemic which was well-received by all the chapters.
MS Person Sushma courageously came forward to energise MS Persons during lockdown giving them a message of hope.
MS Person Anjali Vyaas from Pune shares her mandala art experience.
Steps to colour a Mandala (BY SMUDGING) on your smartphone:
- Get the raw file of Madala in an editable format, jpg. While you have saved it in your phone’s gallery, you can use options to directly edit the picture on your phone.
- Choose your Mandala in the
- Find the ‘Edit picture’
- Select a suitable option to edit a You can find many options like effects, text, frame etc. Don’t use them. Find a suitable option to EDIT the picture. In many phones like mine have an option of Graffiti.
- Let’s say you choose After pressing this option, you will see further options of it: Brush, eraser, a colour palette etc.
- Click the ‘brush’ icon and choose the suitable size to (The brush lets you smudge).
- Pick any colour to smudge a portion of your
- You can undo the edit if it goes
- Just be careful while saving the If you feel tired with all the smudging and have half completed the Mandala, save that half part and then later edit the saved part that you coloured. And tadaaaa… You are done!
- Also, there are of applications to paint a jpg file. You can find them on playstore. That might ease your effort of colouring.
Mandala art therapy is truly healing.
It is tiring to colour on the phone if the screen is not big enough! It needs patience and while I was doing it, it was really helping me being patient. The fact that a Mandala is made and coloured inside to outside, the process of doing so in itself a meditation!
The effort is worth it.
You all will love it. Try it, please! Share your work
I thank MSSI for giving me a platform to share my story:
I was diagnosed with Multiple Sclerosis in 2011 after a long battle with difficult symptoms of optic neuritis, pain, falls and fatigue. I was in India at the time with my husband and there was little to no active knowledge of MS. The doctors also seemed somewhat afraid to tell my family and me what the news was. The diagnosis was finally made after returning to the UK, and it was perhaps one of the most devastating events of my life.
From being the active and independent professional, mother and wife that I was, I spiralled into a deep depression where I thought this was the end for me. I thought I was being punished for something I might have done in my past life. I felt unwell, weak and a burden on my family despite their efforts to support me as much as possible.
A year after my diagnosis, the one thing that had not changed was my love for music. My family reminded me of how I inspire them. They also reminded me of the lessons I have taught them to overcome hardship with determination. So I worked hard to seek the right kind of help both medically and mentally to bring me back to life.
Today, I continue to travel across the world and run one of the most successful music academies for western music in India. I continue to perform on stage too– singing and playing my guitar and the piano.
While in Hyderabad in 2015, I met Meena Gupta (Charter Chairperson, MSSI) and joined MSSI. This has benefitted me greatly because of the up-to-date information and support I receive and also I have been able to connect with other people living with MS.
In 2018, Meena and Mamta Gupta (Chairperson, MSSI) requested that I perform for World MS day in the city of Hyderabad, India on behalf of MSSI. The event gathered and inspired a large public audience. It also raised awareness of MS to the Indian public. I am an active advocate for MS in India, determined to spread awareness of the disease and the help available.
In 2019, I and my newly formed all-female trio, The 969, performed on World Music Day where we spread the word about MS again particularly in women, and inspiring them to keep on living!
I am grateful to be able to spread the joy of music to everyone; the young and old, sick or healthy. Recently, during the Covid19 lockdown, my daughter and I composed and recorded a song based on my experiences; “TOGETHER”. This song is dedicated to people living with chronic illnesses, particularly MS.
Although no two days are the same with my MS, with some days being harder than others, I will not stop being the active and independent professional, mother and wife that I was, am, and always will be.
YouTube link to the song “Together”; recorded at home during Covid19, stay at home policy. https://www.youtube.com/watch?v=MlTgRmq9QD0
MSSI HYDERABAD CHAPTER and APOLLO HOSPITALS has conducted a symposium on Multiple Sclerosis – Fighting the Invisible
A very interactive session was held with a panel of Expert Doctors, MS persons, Caregivers, Sponsors, Committee members and Well Wishers on 1st March 2020 (Sunday) between 10.30 am to 1 pm at Apollo Hospitals, Jubilee Hills.
A panel of Doctors who addressed the large gathering were:-
- Sudhir Kumar Consultant Neurologist, Apollo Hospitals
- RamMohan Vadapalli Consultant Radiologist, Vijaya Diagnostic Centre
- Sanjay Sinha Consultant Urologist, Apollo Hospitals
- Anirudh Chirania Psychiatrist APOKOS, Apollo Hospitals
- Namita Singh, Neuro Psychologist, Apollo Hospital
The session was extremely interesting and informative. Each query was perfectly answered by the doctors and all the doubts of MSPs were clarified. Few new MS persons were registered.
The event was supported by APOLLO HOSPITALS and NATCO PHARMA followed by delicious Lunch.
On March 1st 2020, MSSI Chennai Chapter participated in the awareness programme – Racefor7 organized by ORDI – Organization for Rare Diseases India.
ORDI ( non-profit ) is a national umbrella organization representing the collective voice of all patients with rare diseases in India. Racefor7 symbolically represents the 7000 rare diseases in the world with 7000 people running for 7000 meters.
Mrs. Ann Gonsalvez, Hon. Chairperson addressed the crowd by explaining about Multiple Sclerosis.
The theme for this year was – “I Care for Rare”.
The Chief Guest of the day was the Disability Commissioner – Mr. Johny Tom Varghese.
As MS is one the rare disease, our MS persons along with their caregivers, volunteers & students walked/ran showing our solidarity to support the rare disease group.
The participants were happy that they ran/ walked for the cause of creating awareness.
MSSI Chennai Chapter 1st group therapy session in the Brain Lab was held” on 29/2/2020. An expected event, fortunately, falls on the unexpected day “Brain Lab Group therapy – 1st session” on 29th February – the leap day.
Let’s Break the Stigma – Give importance to Mental Health as same as Physical Health.
The session started with the welcome address given by Mrs. Ann Gonsalvez, The Hon. Chairperson of MSSI Chennai Chapter.
The group therapy session was handled by the Resource person, Dr. Ravi Samuel and his two trainees, Mrs. Kavya and Mrs. Gayathri.
Dr. Ravi Samuel one of the Chennai’s eminent psychotherapist’s, 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 started the session by giving a brief introduction about, How MS affects the Brain.
- Cognition gets affected for the MS Person i.e., Memory, Concentration and Attention.
- Thinking- Thought process gets affected MS Person starts to connect everything in an emotional way.
- MS Person’s lacks of Executive function ie. Information processing and decision making.
Therefore, brain lab will focus on – Brain function, Executive function and Thinking.
The assessment was done to the patients and caregivers to know their level of brain functioning, with several exercises both lingual and written.
The session came to a happy ending by having a delicious Lunch.
MSSI Trivandrum Support Group along with Sree Chitra Thirunal Hospital conducted a program on “ Mindfulness”. Dr. S Krishnan (Associate Professor of Psychiatry) and Ms. Lekshmy K (Psychologist & Mindfulness Researcher) lead the session.
Mindfulness training has been shown to positively affect brain structure. Many MSP’s participated in this session, which covers training sessions over 2 months.
Deepthi Neelagiri, an MS Fighter from Hyderabad, participated in the prestigious all-women art exhibition called ‘Art Invasion’ that is aimed at promoting emerging artists in the field of art.
Deepthi, a few years after the diagnosis of MS completed a certificate course in oil painting from JNAFAU and also learnt the techniques in art from Mr.Sayyad Shaiek. She later did a TTC course from Pidilite. Music being her other area of interest, she also completed a four year certificate course in Carnatic music.
“The motivation to see myself as a singer, an artist started during that time when I wanted to add colour to my dull life” Deepthi says. She strongly feels that art and music had helped her cope with her health challenges and also primarily in keeping her mind happy.
Few fellow MSPs from Hyderabad chapter visited the art exhibition to encourage Deepthi for her marvellous work and celebrate the spirit of being ‘Unstoppable”. Also as part of creating MS awareness, MS brochures have been given and ‘Forms of the Formless’ book has been gifted to Mr. Sayyad Shaiek, Contradiction Art Curator.
The Indian Organization for Rare Diseases (I-ORD) was conceived in 2005 and is incorporated as a not-for-profit organization in India and USA. It is the umbrella organization and represents interests of all rare diseases, individual patients, patient support groups, health policy advocates and health care providers for rare diseases. Its primary mission is to create Awareness – Education & Research, Public Policy & Drug Development.
I-ORD conducted ‘World Rare Diseases Day – 2020’ in Hyderabad on February 28th. The health minister of Telangana, Mr. Eatela Rajender was the honourable chief guest for the event. The intent of the conference is to bring diverse issues into focus and improve the quality of life of all the Rare Disease patients. The campaign targets primarily the general public and seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
MSSI Hyderabad chapter received an invitation to participate in the ‘World Rare Disease Day’ event. The Chapter Chairperson Mrs. Meena Gupta and two MSPs attended the conference. Mrs. Meena Gupta in her speech explained briefly about Multiple Sclerosis, its symptoms, how it is caused and diagnosed, and the available treatment options to manage MS.
Mrs Gupta then introduced about MSSI, and how MSSI through its multiple chapters has been working for the welfare of MSPs to address their needs. She briefly spoke about the Hyderabad chapter’s support activities and services offered for MSPs to help manage their MS for a better quality of life.
Medical professionals, patient advocacy groups, patient organizations from all over India have participated in the event and shared their views.
The event provided an opportunity to create good awareness about Multiple Sclerosis to a variety of audience present. Interestingly television media persons came forward to know more about MS and MSSI, and expressed their interest to extend support in their capacity.
