Samman Association

Our Support Group Meeting in July took place on one of the heaviest rain days – on 13^th July, when Mumbai public transport system was severely disrupted.  Yet people who attended this meeting, which had ‘Fear & How I Overcome it’ as the topic, came from far and wide (Thane, Navi Mumbai etc).  However as the people were few, we had the next meeting on 3^rd August also on the same topic. This meeting was not only well attended but had excellent participation too! Our next meeting was on 14^th September was on the topic “What Disturbs Me & What I Do or Can Do about it”. After the meetings many posted on our WhatsApp group and I quote “Today : In this meeting : I learned : You have to face fear : Yourself:🥰🥰🥰 Thanks: Carol Madame and Samman”, “I have learnt to face my fears by not comparing with others and moving ahead in life positively”, “I will face my fears by being who I am, not comparing myself with others and celebrating life”, “truly the meeting was a great experience n a lot to be learned from all”, “Loved today’s Meeting❤Feels great to be a part of Samman Family❤”, “Thank you so much Carol for inviting me for such a wonderful meeting. Mahesh ji thank you also for encouraging me to join Samman group and today’s meeting. We can learn with each other”, “Carol, I learned from you a lot…And everyone rocks… Samman people are very talented…”.

Next support group meeting on ‘Managing Relationships’ at ADAPT, Bandra on 19^th October. Look forward to interacting with you again!

Carol

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It has been some time since I have posted an update on our activities and am truly sorry for the delay. We have had an epilepsy clinic at the Dahanu District Hospital and one at Shisne Malpada, Palghar yesterday (see photos) and previous to that on 14th April.  Yesterday we saw over a 100 patients in total.   The first Samman epilepsy clinic at the Dahanu District Hospital was on 14th April, a few patients were seen and an epilepsy education program for the local doctors was conducted.  This was well attended.  At Shisne we held our 14th clinic, in all about 30 patients attended;  in time we hope to move to a more accessible location. On May 26th at our 61st epilepsy clinic in Pen over a 100 patients came for treatment. Dr. Pravina Shah and 2 Resident Neurologists from Fortis Hospital and Physiotherapist Dr. Dhruv happily gave their time and Samman members helped with medicine and file distribution.

We have also had support group meetings. On 11th May we had a meeting at Kokilaben Dhirubhai Ambani Hospital. On 13th July, Saturday we will have the next epilepsy support group meeting at ADAPT.

Carol D’Souza

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We had a wonderful time in Deolali these last two days! It was educative and experiential. We travelled comfortably in Volvo bus (thanks to Mahesh who made all the travel arrangements) where the fun and games began! On the way stopped at Vikhroli where Dr. Pravina Shah provided tea and snacks. After reaching the Leslie Sawhny Centre in Deolali, we were given rooms and then had lunch. Everyone then had to compulsorily relax – as many, with excitement, got up at 4 am!! After tea Neurologist Dr. Joy Desai had interactive sessions on the importance of Sleep & Exercise. 40 of us listened attentively and we had many, many questions. After dinner again came enjoyment with games and dancing. And hopefully after listening to the talk on Sleep, all were in bed by 10.30 pm. The next day started with a Yoga session conducted by experienced teacher Sujata Gopalan. After a sumptuous breakfast we gathered on the lawns and for 3 hours were immersed in dance therapy by esteemed Dance therapist Devika Mehta cofounder of Synchrony (http://www.synchronyindia.com/). After another lunch we were on the bus once again and the fun continued….. – Carol DSouza

Weekends get very busy! Last weekend we had a support group meeting on 23^rd March and this was followed by the epilepsy clinic in Pen on the 24^th.  107 patients were attended to in Pen by our dedicated team.  Dr. Pravina Shah and Dr. Sunanda Wagle with a team of Samman volunteers started this clinic at Kalaniketan Farms in 2007 and from 2015 our team has expanded to include neurologists Dr. Joy Desai, Dr. Jayanti Mani and Dr. Pradnya Gadgil.  Physiotherapists Dhruv and Shabnam also assist at the Clinics.

Today we had another support group meeting: we were very happy to welcome epilepsy advocate Torie Robinson from the UK.  She passionately spoke about her life with epilepsy and was keen to help us in any way she could.  Our group had a lot of questions for her ranging from mental health to marriage to work life.  Am glad we got to spend this time together.  Torie we wish you success in all that you do and wish you a safe journey back home!

Carol

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Epilepsy and Insurance was the topic at today’s support group meeting. Insurance agent and Samman member Suresh Rijhwani who has over 25 years experience in the field spoke about the Do s and Don’ts when applying for medical insurance. And the rest spoke about their experiences with medical insurance. Another person working in Insurance, Fahad, gave his views. We also discussed about travel arrangements for the Deolali workshop scheduled for March 16-17. And as yesterday and the day before were Mahesh and Kirti’s birthdays – we sang the Birthday song and celebrated with them! Carol DSouza

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Soon after I returned from the IBE strategy meeting in the UK, I was on another journey.  This time to Palghar for our rural epilepsy clinic, which was a very satisfying experience.  Our team consisted of Neurologist Dr. Pravina Shah, Pediatric Neurologist Dr. Pradnya Gadgil, General Physician Dr. Wagle, and Samman volunteers.  Patients were there by 9 am.   Though Shabnam our host was not present, all the arrangements were perfect; thanks to her caretaker Manoj Yadav.  Thanks also to Lupin for the travel arrangements.

On the same day Mumbai got ready for the marathon.  Our Samman team was up bright and early, to join the dream run, slogans and banners in place.  Once again they enjoyed the experience and shared their stories on WhatsApp. We thank them for creating epilepsy awareness.

– Carol

Yesterday, in celebration of National Epilepsy Day we saw the inspiring movie Shahid. Everyone enjoyed the movie, tea and the snacks that continuously went around. Next Saturday 24th we will be having another meeting with fun and games. Prizes will be given for the online competition as well. If you have still not taken part, pleases view it not so much as a competition but a contribution – you can, with your story, quote, learning, most certainly contribute to the growth of another! Carol

All of us had a great time at Dr. Shah’s home today.  We began the meeting with a prayer – Shruti played a Carnatic raga on the violin and sang as well. Shruti has come down from the US to play at a concert in Tamil Nadu and we were fortunate to have her with us.  Dr. Pravina Shah then took us down memory lane explaining how the first national epilepsy day and the performance choreographed by Archana Palekar led to the formation of the support group and the activities that started thereafter.  Members were very happy to meet with Archana Palekar. After introduction, members were asked to play ‘antakshri’ which they happily did till Melvin sang “Laila o Laila”.  At which point I asked Mahesh Naik to dance to the number and he said he would if I would be his Laila! After which everyone ended up dancing – even those who were initially making a fuss!  Of course, a meeting at Dr. Shah’s home had to end with delicious food and happy faces! We rock guys!!!

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3 Samman support group meetings are now held every month. At Bandra we had a meeting on 25th August where Pranik healers came and gave a demo. They have agreed to conduct a level 1 training course for us at Bandra for a minimum of 8 persons.

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The Samman Manav Kalyan Group also had their meeting on the 25th where among other things they continued with yogic breathing.
31st August there was a meeting at Fortis Hospital Mulund where Dr. Shah reports they had an interactive meeting – a housie game where winners had to give a thought provoking message, the theme being Happiness.
Will keep you posted on dates of the next 3 meetings.

On this occasion, Samman would like to express its gratitude to all the people who have helped nurture this organization and be epilepsy advocates. However, we would especially like to give our thanks to Dr. Pravina Shah.  Dr. Shah your profuse contribution has indeed made a difference to our lives; your continued guidance and help not only to us but also to our families has given us so much happiness. Your role in Samman’s journey holds great significance and like a true Guru, you took us under your wings only to enable us fly high.  Your simplicity, modesty and most of all your cheerful smile reflect your magnanimous personality and we are thrilled to have you as an integral part of Samman. Thank You Dr. Shah, we are indebted to You!  You truly are a remover of darkness! – Samman Support Group Members

P.S. – On this day we also remember Mr. Ushakant Shah and are thankful for his support as well.

21^st July 2108 started off as a beautiful rainy day with us not being sure whether we should have the meeting or not … but thankfully the rains subsided and we had the meeting @2:30pm at ADAPT.  We had 13 members present discussing the topic which was “PURPOSE OF LIFE”.  Wow what a meaningful topic …what emerged were some lovely insights, everyone has their own meaning of purpose.

The senior members of the group are happy doing what they do and giving back whatever, they can in whichever form, that to them is their purpose …for one of the members getting over anger was the purpose.  While the seniors were sorted, the juniors amongst us seemed confused about their purpose, mostly confusing it with work or goals or materialistic things….  besides Anura who said constant self improvement was her purpose in life.

Important points that came out of the discussion was one can have multiple purposes and not a single one. All of us need to get over our fear, be positive make small changes in life to keep us busy. Our thoughts get translated into actions and come back to us. Therefore, it is very important to think positive and be positive. Most importantly we are responsible for our own happiness and only we have the power to make ourselves truly happy.

Carol summarised the meeting saying that being yourself without any masks and being a good human being can be a strong foundation and in the course of the journey every individual shall evolve. She referred to the book ‘Conversations with God’ and talks by Neale Donald Walsch which helped her get a greater understanding of life’s purpose.

Besides the above Ashwini has started drawing again and she showed the murals made by her to all the members, Anura and Karina spoke about their love for pets, Neetu narrated a funny story about a guy she met recently, Tasneem said she was considering gaining employment and Sheela about how she is the treasurer of her building Ganpati which is completing 90 years this year.

The meeting ended with hot samosas and tea; all had a lovely time and we are so looking forward to the next meeting………Pooja Nandi

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At yesterday’s clinic 30 patients made it through pouring rain. Our team of neurologists and Samman supporters began the clinic at 9 am, They found the greenery around the place most soothing and came back to Mumbai feeling refreshed and happy at time well spent!

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Dr. Priyanka Pandey conducted the 4th Manav  Samman meeting on 30th July 2018. The topic was management of epilepsy through yoga. Yoga, an integral part of Indian culture and heritage, is said to bestow good health － physical, mental and spiritual － on the practitioner. There are various types of yoga involving postural exercises (asanas), breath control (pranayama) and meditation. She discussed the astang marg of yoga which includes the eight steps of yoga as follows:

yama, niyam. asana, pranayaam, dhyaan, dharna, samadhi

She also explained how Sahaja yoga, a simple form of meditation, reduced seizures and EEG changes in people with epilepsy. The effect of meditation was attributed to a reduction in the level of stress and enhance the mental and physical health of patients. All the members listened careful and practiced all the yogic asana according to the instructions given by Dr. Priyanka. At the end of session all the members reflected on their experience of the yoga session.

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Manav Samman organised its 3rd meet on 26.5.18.   Dr. Priyanka Pandey (clinical psychologist) spoke about the significance and importance of being mentally health and followed this with relevant games and activities.

Activities were as follows –

1. ‘Know Yourself’ – each attendee spoke about themselves as well as their qualities.
2. ‘Pick up the Token’ – under this activity people randomly picked a token paper which had been marked with an activitiy like song, dance, jokes, advertising etc. and they had to perform accordingly.
3. ‘Yoga and meditation’- under this Dr. Priyanka guided them all on a yoga skill to promote basic concentration and followed this with positive affirmations and meditation.
4. ‘Playing with Colors’ – in this activity each member of the Samman family put their hands into a colour plate and place it on chart paper with their autograph (see photo).

Playing games or performing certain activities is incredibly important for a personality development – helping to shape key social, creative, language, emotional, cognitive and physical processes. As a result, play therapy can help in a variety of ways, although exactly how will depend greatly on individual needs. The approach is considered particularly important for people who may have difficulty expressing themselves verbally.

Happy to inform you that our next Manav Samman meeting will be held on 30.6.18  timing 4.30 onwards.

Was very happy to celebrate Vishnu Rane’s birthday at our support group meeting yesterday.  Many people attended to focus on how they could support Samman Association – some of the ideas: an advocacy group to focus on the rights of people with epilepsy – support on social media: liking and sharing our Facebook page, Instagram and twitter feeds – taking part in on line competitions held by Samman – supporting petitions for people with epilepsy – making videos of their experiences with epilepsy –  creating artistic posts with messages that can be uploaded on social media  – suggestions for interesting topics to be discussed at support group meetings and different excursions we could take etc.  All in all, a very interesting meeting, which I hope, will create more participation.

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Danny Glover an American actor got his first seizure at the age of fifteen and eventually, after about 20 years, he was successful in outgrowing the condition. He said “Eventually, I could recognize it happening…Each time I got a bit stronger and the symptoms began to diminish to the point where I was ready to go on stage.” Today, Glover works to bring awareness to epilepsy by supporting the Epilepsy Foundation in America. He contributes to the organization’s programs for children and volunteers his time speaking about epilepsy and raising awareness about the issue.

(Danny Glover in the movie, ‘The Color Purple,’ as Mr. Albert)

PRINCE – The Late American Pop Star – was born with epilepsy; he got teased a lot in school. However, these experiences shaped his career and success. He developed a unique style and persona by being flashy and loud. His fans loved him even more when he revealed he had epilepsy.

(American Pop Singer, Prince; died on 21^st April ‘16)

Chanda Gunn is an Olympian American ice hockey player and ambassador for ‘Athletes vs. Epilepsy’ and Epilepsy Foundation of America. Her first bout with epilepsy was a series of uncontrolled tonic-clonic (formerly called grand mal) seizures and she had to drop out of college to regain control over her epilepsy. She worked hard to prove herself and excelled. She won a bronze medal at the 2006 Winter Olympics. At the games in Turin, she played close to 250 minutes and had 50 saves with a save percentage of 89.3%! Today, Chanda lives an active life with her family. She continues to battle epilepsy but never lets it defeat her. She is highly involved in charity work. Chanda believes people living with epilepsy should support one another and encourages the community not to let seizures discourage them from chasing their dreams.

(Chanda Gunn- American Ice Hockey Player)

Don’t let epilepsy come in your way! Fight It! You’ve Got Support

JOIN SAMMAN!

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On 28th April, the Samman-Manav Kalyan team organized a support group meeting at Dahisar East. LIke the first it was very well attended, with more than 30 people present. Neuropsychologist Dr. Urvashi Shah captivated the audience with her frank, down to earth, meaningful talk on epilepsy and related psychosocial issues. From the feedback received one can say it was a huge success! Some people clarified their doubts and queries. Samman Members also spoke about how beneficial joining the group was to them. Dr. Priyanka Pandey also conducted a meditation exercise with the group. Special thanks also to the Manav Kalyan Kendra team: Neurosurgeon Dr. Mohinish Bhatjiwale, Psychologist Dr. Priyanka Pandey, Mr. Yogesh Jagtap and Mr. Abishek Mishra and to the hospital for making all the arrangements. At the end of the program Samman representative Shifa Siddiqui spoke about our Association asked the audience to raise awareness by liking our FB page and follow the instagram handle (@sammanassociation). We also gave badges which can be worn or pinned on bags, to help create epilepsy awareness.

The first Samman Epilepsy support group was held at Fortis Hospitals, Mulund on Friday, 27th April 2018. It was attended by 10 patients and their families along with resident doctors and nurses. The support group was conducted by neurologists, a neuropsychologist, and a therapist. To break the ice, each one introduced themselves and spoke about how epilepsy affected them. The session centered around the idea that epilepsy is not restricted only to seizures but affects other aspects of life like marriage, employment, education along with effects on one’s cognition, mood and behaviour. Each one contributed to the discussion by saying how they have combated these difficulties and dealt with stigma. It was an enriching and relieving experience for the patients as well as the professionals. Going ahead, each session would be focusing on a particular theme, e.g.: the next session’s theme is memory difficulties and compensatory strategies. – Tanvi Dingankar

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21^st January, 2018 – Mumbai Marathon & Rural Epilepsy Clinic

Running for us was Dr. Jayanti Mani, Pooja Nandi, Rajiv Varaiya, Anura Kenkre, Anthony & Mrs. Goveas, Ignatius Misquitta, Karina Pandya, Chintamani Vartak, Tasneem  and Murtuza Rajkotwala,  Srinivasan Iyer.  Jyanti & Pooja successfully completed the 21km and 10km respectively for our Association whilst the others were our Dream Runners – creating epilepsy awareness.  We thank them  for their efforts and also very specially thank all our sponsors.

On the 21^st we also had a successful rural epilepsy clinic at Palghar.  Neurologists Dr. Pravina Shah, and Dr. Rima Chaudhar and General Physician Dr. Wagle attended to patients as well as Physiotherapist Tejal Gosavi.  Samman volunteers helped the clinic to run smoothly. Post camp Lynette has assisted in recording all the data.  We hope that significant learnings come out of this.

Carol D’Souza

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We were happy to see new faces in the new year! We got the first new member of 2018 last Saturday, and were happy to have a couple of old members, whom we had not seen for a very long time, attend this meeting. As usual there was a sharing amongst members, this time about habits they were willing to let go and new ones they were willing to make. May we in 2018 continue having a renewal of participation from Members! Best wishes for 2018!

Carol D’Souza