Ecellin’s Blog

April is the month of many birthdays: Dr. Pravina Shah, Carol D’Souza, Keyur Vaghela, Nikhil & Rajni Agarwal, Manohar and late Sydney Joseph. Sarah had sent us a 2kg chocolate cake with the words “Many Happy Returns All My Loved Ones” on it. At the start of the meeting Carol spoke about Dr. Pravina Shah and quizzed the members on different events in Dr. Shah’s life. After the members gave answers, Dr. Shah spoke about the event and how it impacted her life. The whole session was very enjoyable. We then cut the cake and had delicious cold pani puri made by Shweta & Ashwini Mulay.
P.S. Have not been keeping very well hence this late update – Carol

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This comprehensive data gathering and reporting tool is designed to advance epilepsy care by improving the quality, speed and accuracy of information patients can record and share with physicians. It was developed by the Epilepsy Therapy Project (a US nonprofit organization that accelerates new epilepsy therapies) to run on the Android mobile operating system. The app is available free of charge through the Android Market and from www.epilepsy.com

In the February 2011 issue of Annals of Neurology, Drs. Linnebank and colleagues from the University Hospital in Zurich, Switzerland and the University Hospital in Bonn, Germany, present an interesting study looking at 2,730 people treated with antiepileptic drugs and 170 untreated people with epilepsy and 200 healthy individuals.

The investigators found that treatment with carbamazepine, gabapentin, oxcarbazepine, phenytoin, primidone or valproate was associated with lower levels of folate. Vitamin B12 serum levels were higher in people treated with sodium valproate compared with the entire group of untreated people and healthy controls. The folate and vitamin B12 levels below the normal range were associated with changes in blood counts.

The investigators concluded that it is essential that people who are taking antiepileptic drugs should have their B12 and folic acid levels checked. If their levels are found to be low, it is also important to supplement individuals. This study is a reminder that there are always potential complications associated with antiepileptic drug use. Routine supplementation of both men and women with folic acid and vitamin B12 may be essential and should be looked for by healthcare professionals who are caring for people with epilepsy.

(As reported in Epilepsy 360 by Epilepsy Action Australia)

Last week we started the Empowerment Program for people with epilepsy. We requested friends and family members to sponsor the program and are heartened by the response. We have 3 people enrolled in this program. Tanvi has been making crochet articles, Nitin paper bags and I have asked Yasmin to take charge of the display board at ECell. I will be uploading photographs shortly. Carol

Prithi Business Development Manager at Avon spoke to the group on the benefits of becoming an Avon Distributor. Already Yasmin Is doing well as a distributor and she spoke about her experience. At the end of the meeting Carol distributed Avon brochures. Members who can get orders using the brochure could then choose to join the network. No investment is required as products are given on credit.

As you may be aware 70% of people with epilepsy get their seizures under control with medication / surgery while 30% continue to have seizures. These persons, who often are on multiple drugs, face immense problems. Their education gets hampered, they have no scope for employment and they remain dependent and ‘at home’ for most of their lives.
We wish to start an empowerment program for these persons who have uncontrolled daily / weekly seizures. Our program would offer them sheltered work that makes use of whatever talents they possess. For their hard work we would like to give them some remuneration for which we appeal to your generosity. We feel that your support of only Rs.100/- each month will help us in this endeavor. A one-time donation of any value, for this purpose, is also welcome. We encourage you to think of the less fortunate especially on birthdays, anniversaries or other happy events in your family.
We would like to start this program in the new financial year i.e. from April 2012. Your cheque in the name of ‘Indian Epilepsy Association’ can be couriered to: Indian Epilepsy Association, E-Cell, 2nd floor, J.S.S. Municipal School, Nana Chowk, Mumbai 400007. All donations will be tax deductible.

Thanking you,
Yours truly,

Dr. Pravina Shah Carol D’Souza

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We returned from Kochi on the 28th night after spending 6 days there. Our sightseeing trips included the Kochi city backwater tour, Cherai Beach, Athirampally waterfalls, elephant training center and Kaladi the birthplace and Temple of Adi Sankaracharya. Some of us also went for the Backwater village tour. The pictures say it all! The conference, especially the second day was very enriching for people with epilepsy and caregivers. Amongst the 4 persons who spoke about their experiences with epilepsy was doctor from Kochi; Advocate Govind Bharathan who was responsible for putting in the PIL that made it possible for persons with epilepsy to legally marry spoke about the options the way forward for getting inclusion (certain categories of persons with epilepsy) in the Persons with Disabilities Act. Christopher Fernandes from the Bombay Chapter made a good presentation about his website ‘theinformationlighthouse.com’. Dr. Nirmal Surya ended the session by detailing the immense work he is doing in Maharashtra with the National Rural Health Mission.

Our trip was made all the more memorable with the hospitality provided by the organizers, the wonderful food and the immense shopping we did!

Yesterday we discussed the following income generation projects:
Avon distributorship
Sale of sweets and chocolates
Order received for making paper bags
Packing work done at ecell

This meeting was very important as many of our members are at home and looking for sheltered work. We shall continue discussions at the next meeting and ask all interested persons to attend the same. Carol

The fabulous attendance, and the wonderful performances at our two previous fundraisers ‘Keep Alive’ (2005) and ‘Kal Aaj Aur Kal’ (2007) and the all round success of both motivated us to have another musical extravaganza. On 19th April, 2008 at the Ravindra Natya Mandir, Prabhadevi, prominent musicians from the Mumbai film industry gave an outstanding performance. For each set of songs the focus was on a different instrument. Enoch Daniels whom we had heard only on HMV earlier came down especially from Pune to play the grand piano for us. Suresh Yadav a popular musician with music directors Laxmikant Pyarelal, Kalyanji Anandji, RD Burman and many others, played the flute and saxaphone whilst Suresh Soni a pioneer of the disco dandya concept thoroughly enjoyed himself on the drums as did Aziz Mohammed a front ranking dholak and tabla player. However the ‘must hear’ and ‘must see’ was Homi Mullan on the castanets! Ranjit Gazmer played the madal and Ramesh Iyer who coordinated the whole event was fantastic on the guitar. Shrikant Narayan and Shailaja Subramaniam sang a combination of old and new to the fantastic accompaniment of the whole orchestra mentioned above. Needless to say this show was a resounding success.

The first rural epilepsy camp conducted by the IEA Bombay Chapter was held on 18^th November 2007 at Pen in Raigad district. Every 6-8 weeks since then a comprehensive epilepsy care team consisting of a Neurologist, General Physician, Psychologist, Special Educator and volunteers from Samman the epilepsy support group have been conducting camps at the same venue, along with homoeopath doctors. Medicines are distributed free of charge at the camp as patients attending these camps are very poor. At the very first camp it was observed that many patients had visited doctors but for various reasons, their medical compliance was poor.

Details of patient attendance are as follows:

18^th November 2007; No of patients: 25

16^th December 2007; No. of new patients 21; follow up cases: 14

24^th February 2008; No. of new patients 16; follow up cases: 23

30^th March 2008; No. of new patients 3; follow up cases: 23

25^th May 2008; No. of follow up cases: 22

20^th July 2008; No. of new patients 4; follow up cases: 23

31^st August 2008; No. of new patients 9; follow up cases: 28

12th October 2008; No. of new patients: 10 ; follow up cases: 27

30th November 2008: No. of new patients: 4; follow up cases: 30

18th January 2009: No. of new patients: 8 (2 cases  diagnosis needs confirmation with further investigation); follow up cases:30

The above data only refers to epilepsy / febrile seizure patients. Often there have been upto 10 non epilepsy cases coming for diagnosis.

Those who do not come for follow up are mostly those identified with febrile seizures and those who were on medication before the start of the camp and were doing well. For some travel is difficult hence regular follow up is not undertaken.

However amongst those coming regularly great progress has been made in terms of compliance and seizure control.

On 25th October a competition was held for members of our epilepsy support group ‘Samman’. Diyas were painted and decorated and cards made. Dr. Pravina Shah gave away the prizes and tokens of appreciation. Lunch at ‘Shettys’ a restaurant conveniently located close to ECell was provided to participants. The day ended with fun games and snacks.

Today was exciting, I (Carol D’Souza) showed our support group members this newly created blog. They were thrilled to see their photographs on the net; I explained to them that this was the world wide web and took written permission from each one to upload their photos. We are out of the shadows! One conference has just gotten over and we were sitting discussing the next for it will be in a few months time: 7^th and 8^th of February, 2009 in Tirupathi. A big group of us are planning to be there. We also discussed the forthcoming events on 17^th and 22^nd November. The meeting ended with a game, tea and snacks. The next meeting (22nd Nov) will not be held at E-Cell but at K.J. Somaiya Medical College, Hospital & Research Centre.

We celebrated the event with an awareness program at Wockhardt Hospital, Mulund. Wockhardt has promised to start a similar support group and with Dr. Shah to nurture the group we are sure it will be a success!! Our group has promised any help required. Associate Vice President of Wockhardt, inaugurated the program with the customary lighting of the lamp and encouraged such awareness drives and support groups. Dr. Pravina Shah then spoke of its purpose. Epileptologist, Dr. Jayanti Mani started the workshop by detailing the medical aspects of epilepsy after which Neuropsychologist Dr. Urvashi Shah spoke of psychosocial aspects of epilepsy. A panel of doctors then answered questions from the audience – and there were so many! People with epilepsy also gave personal testimonials. The meeting ended with Carol D’Souza enumerating the work done at ECell and a vote of thanks from Dr. Mani. Delectable items ended the day on a happy note.

22^nd November – About 150 persons attended the awareness program held at Somaiya hospital. Dean of the hospital Dr. Dewoolkar took time from his busy schedule to inaugurate the program. Medical and psychosocial aspects of epilepsy were explained and the film ‘Epilepsy the Untold Story’ shown. A Q&A session and tea and snacks ended the day’s program. Needless to say that Dr. Sujatha Kanhere (Neurologist Somaiya Hosp), Ruchi Saxena (UCB Pharma) and Dr. Urvashi Shah (IEA Jt. Secretary) who did most of the organization, were very happy with the outcome of the program.

The day began as usual with villagers streaming in from 9 am for a medical check up and for their medicines. This time 30 old cases came for follow up and 4 new epilepsy cases were diagnosed. Instead of the usual breakfast a lavish lunch was offered to the villagers courtesy Ashokbhai and Hemaben Parekh who always are our gracious hosts at Pen. After the sumptuous lunch children from the nearby orphanage (Child Haven International) and Special School (Sumangal School for Mentally Retarded, Hearing Impaired and Multiple Handicapped children) danced, recited and gave us and idea of the skill training they receive. It was a joy for everyone the performers and the audience which comprised of people with epilepsy, their caregivers and supporters.

Never before have I seen a more interested bunch of students. I (Carol D’Souza) was really impressed with the approximately 120 students of standard 9 (boys and girls) at the awareness talk held today at St. Gregorius School, Chembur. They listened attentively and asked questions. After a 20 minute talk we had a Q&A session and then saw the EPI film, ‘Epilepsy the Untold Story’. Our sincere thanks goes to the Principal of the school, the teachers, and Sanjana from standard 9C who was the coordinator for the program.

We had a wonderful time yesterday at the Samman Christmas party. Santa arrived just as we finished 5 of Paramahansa Yogananda’s energizing exercises, and gave presents to everyone. As everybody was in a jolly mood we immediately cut the cake and played games. A session on Jesus Christ and his mission followed. The party ended with hot snacks, cake and tea.

Wishing all members a year of good health, love and peace.  Two events will take place in February, the Epilepsy National Conference in Tirupathi (7th & 8th) and the Awareness Program at Bombay Hospital on the 21st.  The Jan-March 2009  Epilepsy India issue is out and should have reached your homes.  Please do send me an email if it hasn’t.

10th January, 2009: Our first support group meeting this year was well attended. 6 new people came and actively participated in the discussions. After exercises and introductions interspersed with Q&As,  it was suggested that at the next meeting we share a meaningful story – could be from a holy book – and if time permits have a debate – suggested topic ‘Reading is a useful hobby’.  Each member then enjoyed a one minute game and the fresh hot samosas and chai that followed.  The next meeting will be held at Dr. Pravina Shah’s residence on 24th January from 4 p.m. to 6 p.m - see page ‘Coming Events’.

Yesterday we had our 10th epilepsy camp at Pen.  40 patients had come for a check up out of which 2 were not epilepsy, 2 need further investigation before confirming diagnosis, 6 were new epilepsy cases and 30 were old cases that came for  follow up and medicines.  The camp went smoothly and medicines were given at a nominal cost / free of charge.

On January 24th 35 E-Cell members gathered at Dr. Shah’s new home in Vikhroli – some of them met Dr. Shah for the first time and all of us enjoyed the hospitality she is so well known for. At the previous meeting we had decided to share with each other some story or reading from a holy book which inspired us; this we did. The meeting ended with cutting of cakes to celebrate the birthdays of our members. Dr. Shah surprised us by having a live counter of delicious Mumbai paani-puri, bhel and dahi batata puri. Our meeting rocked.

What a wonderful time we had in Tirupati; made all the more memorable by the hospitality provided to us by the Organizing Secretary Dr. B. Vengamma.  We left on 6^th afternoon and reached at 4 p.m. on the 7^th.  After resting a while at the AP Tourism Hotel, we went for the inauguration.  The student nurses of SVIMS put up a lovely dance performance.  This was followed by an Indian dance by students of Mr. Suresh. The next day (patient & caregiver session) started with presentations by various chapters on the work being done.  We were then fortunate to make it for a part of the parallel session on alternative methods to control seizures.  Congratulations to Dr. Meena Gupta who was presented the prestigious Shri H.C. Bajoria award.  Her oration was on the Psychosocial Dimensions of Epilepsy.  During the K.S. Mani session which followed, the student nurses and Samman put up skits which were much appreciated.  Mahesh Palan and Vishnu Rane at this session also spoke about their lives with epilepsy.

 

In the evening we went for darshan to the Tirupati Temple.  The next morning we visited some more temples, did some shopping and went for the sound and light show at the Chandragiri fort.  All said a very enjoyable trip! 

We spent the morning of Valentine’s Day interacting with other NGOs and customers.  It is always a pleasure to take part in this exhibition cum sale organized by the Indus Festival of Charities.  Our products included greeting cards & tags, fancy paper bags, jute bottle bags / wine bottle bags, crocheted items like baby suits, mobile phone covers, handkerchiefs, hand bags etc.  These products were made by Tanvi, Sydney, Sarah, Suruchi and others.   We also took this opportunity to visit the Kala Ghoda festival and of course lunch at Leopolds!

 

We have a new volunteer – Stefan Michael has come all the way from Marburg, Germany to work with us.  He is a special educator and social worker actually specializing in Alzheimers, but due to his own experience with epilepsy wished to work with us.  On 13th March he will leave to work for a month with ARDSI in Kerala where he has volunteered before.  Stefan’s first day with us was at the Indus Festival of Charities – we hope he enjoyed the experience and wish him all the best!

As soon as I became aware of the epilepsy camp to be held in Holy Family Hospital, Bandra, I requested the organizers to allow the IEA to do a presentation on our activities.  Dr. Sushil Tandel who incidentally is one of Dr. Pravina Shah’s students readily agreed.  About 30 patients attended the camp which was very interactive.  Many of them informed that they would become members of the IEA after hearing about the support we offer.  We are very thankful to Holy Family Hospital for giving us this opportunity.

 

Yesterday’s program was well attended with over 130 persons with epilepsy and caregivers attending the same.  After Dr. Pravina Shah welcomed the audience, Dr. Viraj Sanghi gave an overview of epilepsy.  Dr. Urvashi Shah then beautifully detailed the psychosocial problems that are associated with epilepsy and this was followed by Carol D’Souza’s presentation on services provided at the IEA Bombay Chapter – ECell.  Mr. Charles Antoine Janssen then informed us of UCB’s vision, mission and values, after which the EPI film ‘Epilepsy An Untold Story’ was shown.  The audience was then given an opportunity to ask questions – and there were so many!  A panel of doctors comprising a neurosurgeon, neurologists and neuropsychologist answered these questions.  A quiz, feedback form and the Samman theme song ‘Sun, Sun, Sun’ ended the session.  Most heartening for me was that 10 people from the audience became members of the IEA Bombay Chapter after the meeting!

20 people attended today’s meeting.  We were all very happy that Sheetal who is down from Amsterdam for a holiday made it a point to attend the meeting.  As usual we started with exercises and after introductions spoke of our experiences the last two weeks.  The meeting ended with indoor basketball.  Am thinking of holding carrom tournaments.  Anyone interested?

Missed a few people this meeting – Anagh, Rane, Narayan – where were you’ll?

38 members and 6 caregivers were present at the AGM – the largest ever gathering Dr. Shah informs me.  After a fruitful meeting we had a sumptuous lunch at Shetty’s Restaurant at Nana Chowk.  We appreciate the active participation of our members.   If any life member or annual 08-09 member has not received the minutes please email me at ecellin@yahoo.co.in.

41 people with epilepsy attended this camp which was held on 8th March, out of which 9 were new cases.  These camps are very satisfying as the prognosis has been good in very many cases.  As usual medicines were distributed free or at a nominal cost.  The next camp date has been fixed for 19th April.

14 of us were present at this meeting, one person came from Ambernath and another came fromVasai – that too for the first time.  After introducing ourselves we spoke about the two weeks that have passed since our last meeting, members shared humorous incidents, stories that were meaningful to them, and personal beliefs.  Dr. Vengamma has sent me many photographs which were taken during our Tirupati trip which I showed to the members.  Two announcements: one Dr. Singhal has invited all our members for the World Parkinsons day celebrations (see coming events) on 3rd April and the second: we are going to have carrom tournaments (please send me your names if interested and if you haven’t done so already).  I will ask the 4 people who are to play first to come an hour early on the 28th, the next meeting date.

This meeting was quite different – as there are many birthdays in the month of April, we planned the birthday celebrations. Kavita whose birthday was on 11th March and Bevinda whose birthday is on 1st April, brought cakes and snacks for all of us.  If you know any the following persons please call them and wish them:

Sarah Sharma – 31st March, Bevinda 1st April, Dr. Pravina Shah 6th April, Ashokbhai Parekh – 15th April, Sydney Joseph – 19th April, Rajni Agarwal & Carol D’Souza 26th April, Nikhil Agarwal 26th April.

See you’ll on 11th April, at the next meeting!

6th April was Dr. Shah’s birthday and Samman members gaver her a surprise party at her own home!  She was truly surprised and delighted.  We presented her a lovely book which documented our feelings and gratitudes in pictures and words.  She has truly done so much for us.

11th April we had a surprise party for Ashokbhai at Krishna Palace.  All of you who were there enjoyed the lovely party.  We will all remember for a long time to come the surprise, delight and laughter that overcame Ashokbhai as he entered the room.  Most of you would know Ashokbhai: he  has been supporting us with fundraisers and donations right from the inception of E-Cell and  provides the infrastructure whenever we have medical camps at Pen.   We had a musical housie that afternoon and our two singers Tejaswita and Smita Chandaver did an excellent job!

This time it was just Dr. Shah, Dr. Wagle, Sujatha, Alpana, Mahesh and myself that went for the camp.  Ashokbhai and Hemaben had come too.  As usual the camp went smoothly with 42 persons attending out of which 9 were new.  Next camp will be held on 31st May.

Wonderful news – the Joshi’s have a grandchild!

At this support group meeting, after exercises we had a sharing of what’s in the news.  The death of a school girl due to Asthma – late medical help, led us to discuss when we should call a doctor when one has a seizure.  After narrating 2 pertinent stories, we then had a session on knowing ourselves better.

Dr. Shah attended the latter part of the meeting and spoke of the goal of having support group meetings i.e. to grow in confidence and ability to manage ourselves better.  Dr. Shah, Sydney, Keyur, Ancy and myself then cut a cake which had been made by Minnie Juneja.   I was so happy that all these people wanted to celebrate their birthday with us and brought lots to eat!!  Manohar and Nikhil we missed you, we would have liked to celebrate your birthdays too!

To all Mothers wishing you a very Happy Mother’s Day!  I wondered who would come for the meeting on such a hot day, that too at noon! Many too were on holiday.  We were about 10 of us who turned up and had our dose of exercise and sharing.  We spoke about ‘change’ – how difficult it was to make decisions that involved change!  The discussions veered towards the biggest and most challenging change of all – marriage!  The meeting ended with a very enjoyable game which Sharvari won!

Disappointing! Only 4 members were there for the meeting! Guess either you’ll found it too hot or you guys are holidaying.  We made the best of the situation and enjoyed playing carrom – ladies against men and the ladies won!! Mukesh was the real dark horse, he said he didn’t play when he actually plays quite well.  Hope to see many more at the next meeting on the 13th of June.  After that I am out from the 19th June to 2nd July.  Am going to Italy and Hungary.  I will be receiving the Ambassador for Epilepsy award or rather ‘pin’ at the International conference being held in Budapest from the 28th of June to 2nd of July.  Happy Holidays!

Am sure we are all eagerly awaiting the monsoons – a respite from the sweltering heat – in spite of which a good many of you did attend the meeting at 2.30 p.m. yesterday.  Two new people came as did Rane who had been absent for a long time due to family and election duties. Kyam too came looking refreshed after a 2 week holiday in Pune.  After exercises and introductions we did the first 9  of Sri Sri Ravi Shankar’s principles of spiritual living; the latter 9 will be done on July 11th.  Next support group meeting to be held on 27th June will be conducted by Kavita Shanbhag as I will be out of India. Kavita who most if not all of you know is a special educator, stage actor and drama teacher – and most importantly a wonderful person. So I urge all of you to come and make the meeting a success.

I thoroughly enjoyed my holiday in Rome, Florence, Pisa, Venice & Budapest. At Budapest I participated at the International Epilepsy Congress. However, due to unforeseen problems that arose with travel arrangements I just made it on time for the award ceremony on the 28th of June where 12 of us received the Ambassador for Epilepsy Award. It was a great honour.  Will tell you more tomorrow at the support group meeting.   Please brave the rains and come!

I do believe the AED Mysoline  is in short supply.   I do hope you have stock till the 25th of July as that’s when Piramal Healthcare says it will be available.  Sorry we do not keep Mysoline at our Centre.

I was pleasantly surprised to see a lot of members who had not come for a long time at this support group meeting.   Jinesh came  all the way from Virar!  We once again did Sri Sri Ravi Shanker’s principles for spiritual living.

The rural medical camp at Pen went smoothly.  53 patients had come.  The surroundings were awesome with the trees and foliage different shades of green after the rains.  It was awesome.  Hey for the first time in Pen I tasted zunka bhakar – loved the zunka.

The annual exhibition cum sale for NGOs at St. Joseph’s Convent, Bandra, was hugely sdnuccessful.  Products made by Tanvi, Sydney, Nitin and other ECell members were put on display and sold on 22nd morning.  Thanks Christopher, Ignatius and Nitin for coming and helping at the table.  We also asked Doorstep School (our neighbour at JSS Mun. School) if they wanted us to put any of their products on sale and they gave us the wrapping paper and spectacle and mobile bead chains made by slum children, which we sold for them.

23rd August we had our support group meeting which focused largely on our upcoming trip to Indore.  Details are as follows: Leaving 4th Feb by Avantika Express in the evening and returning on 10th Feb.  In all 4 nights will be spent in the hotel and 2 in the train.  3 tier AC both ways costs approx. Rs.1700 and sleeper (non ac) approx. Rs.640/-.  Twin sharing hotel room cost Rs.1100/- and 3 person sharing costs Rs.1350/- approx.  Members coming to Indore will have to pay this amount at either one of the support group meetings in Sept.

Am happy to note that attendance at support group meetings has been increasing.  Is it the forthcoming picnic?? Or conference??  Anyway on the 12^th the group came up with good ideas on what we could do at support group meetings like have a quarterly free medical check up, (which Dr. Pravina Shah fully supports) and have competitions like a salad making competition.

On the 26^th I (Carol) was not there for the meeting but apparently the group had a blast!  Being Navratri, a dandiya dance competition was held and various prizes were given for best couple, best dancer, most creative (a belan was brought instead of the dandiya!), best dressed, most helpful (ECell was nicely decorated with rangoli for the event).  Meeting ended with tea and snacks for everyone.

Though I (Carol) could not be present at the support group meeting on the 10th, heard you’ll had a great time playing antakshri.  On the 24th Christopher brought a gentleman called Anil who was a former NIIT group head and now runs his own computer classes.  He explained to the group about learning computers and got to know of their interests.  Hope to see a large group at the next support group meeting on the 14th.  The logistics for the 15th Nov picnic to Silent Hills Resort at Manor will be explained.  Additionally Mr. Prakash Kadam will be bringing members from Manashakti who will talk about living a life free of stress and tension.

 

It’s 2 years since we started the medical camp at Pen for people with epilepsy. Today was the 16th camp and there was a turnout of 80 patients! 22 of them were new cases.  A local TV channel also covered this camp.  The prognosis of the follow up patients is very good and encourages us to continue with this project.

 

Awesome! 22 reporters came today for the press conference, some Samman members too.  After an opening prayer by Kavita Shanbhag,  and presentations by Dr. Pravina Shah, Carol D’Souza and Dr. Sangeeta Ravat, the press interacted with people with epilepsy and caregivers.   Some press members interviewed Dr. Sangeeta Ravat.  Cheers to a healthy association with the press to raise epilepsy awareness and improve the quality of life of people living with epilepsy.

The picnic to Silent Hills Resort was anything but silent!  It was filled with fun & games and prizes galore.  The guys, girls and little children enjoyed the water and the rain dance. The well landscaped  resort is spread over 60 acres of sprawling luch green hills in Manor.  It is perched on the confluence of two perennial rivers, the Vaitarna and the Deherj.  Psychiatrist Dr. Manoj Bhatavdekar came with his son Satyajit.  He spoke to us on reducing tension and proper communication.  Many members and caregivers had a lot of questions for him.  Happy National Epilepsy Day!

Post our press conference on 9/11 the following press articles appeared in the press.  The article in the DNA appeared before the press con, after the editor interviewed Dr. Shah, Mahesh and Alpana.  We are thankful to UCB India Limited who gave a full page ad on epilepsy on 17/11 and handed out 40,000 epilepsy calendar cards to the lay public at strategic locations all over India on 17th Nov.

The Indian Epilepsy Association, Bombay Chapter along with the General Practitioners’ Association of Greater Bombay organized a one day epilepsy education program for GPs at the Krishna Palace Hotel, Grant Road. It was well attended by approx. 90 general practitioners who came well on time for the program.

In the first session Dr. Jayanti Mani, Consultant Neurologist, Kokilaben Dhirubhai Ambani Hospital spoke on the clinical spectrum of epilepsy; she was followed by Dr. Sangeeta Ravat, Prof & HOD Neurology, KEM Hospital who detailed the investigations involved and then Dr. Joy Desai, Consultant Neurologist, Jaslok Hospital spoke on Medical Management.  The first session ended with the launch of our website ‘ieaecell.org’.  Dr. Pravina Shah first thanked Dr. S.N. Bhagwati for supporting this website and our web designers Santosh Tholar and his partner Himanshu of Neoadvertising. Carol D’Souza then briefly described the site.

The second session focused on the Surgical Management, Epilepsy Comorbidity, Special Issues in Children and Prevention of Epilepsy.  The faculty for this session was Dr. Deopujari, Consultant Neurosurgeon, Bombay Hospital, Dr. Urvashi Shah, Neuropsychologist, KEM Hospital, Dr. Anaita Hegde, Pediatric Neurologist, Wadia & Jaslok Hospitals, and Dr. Pravina Shah, Consultant Neurologist Wockhardt Hospital, Mulund respectively.

The meeting ended with a vote of thanks by Dr. C.S. Kambli, Hon. Gen. Secretary (GPA-GB) followed by a sumptuous lunch.  At the end of the day we felt that this program was well worth the effort.  We appreciate the enormous support provided by UCB India Pvt Ltd that made the month of November, usually celebrated as ‘Epilepsy Month’, very successful.

I (Carol) am holidaying in Dhahran, Saudi Arabia for a week.  Have come here for my sister’s silver wedding and will be back in Mumbai for Christmas.  There is so much of greenery here, difficult to believe it is a desert. Will show you photographs when I return.  I think the next support group meeting cum new year party will be on the 2nd Sat in Jan. Till then wishing you a very Happy Christmas and a wonderful New Year.

Happy to meet you all in 2010!  May we score perfect 10s in all our ventures!  After exercises and sharing we had a stimulating debate on ‘Conferences – Are they worth attending’.

As you must have read in the last newsletter there is a newly formed group working on ‘Disability in Epilepsy.  At our meeting most felt that those severely affected by their epilepsy should be given disability benefits.  However there are few if any willing to stand up and fight for their rights.  We need the people most affected to join in this fight or at least write to us about their needs.

It was supposed to be a party for us – and we did party after we wrote down questions to be asked for the meeting on the 30th at KEM.  Members took time to write in detail their problems that needed answers.  After that Anil Uttarkar the computer sir spoke of the classes he was going to conduct at ECell.  He then sat with each of the interested members separately to evaluate their learning capacity.   Happy to say that the first class held on 28th Jan went well with 5 members attending the class.  We will be having computer class every Thursday from 11 a.m. to 1 p.m.  As we will be away in Indore from 4th to the 9th for E-Con 2010, there will be no computer class on the 4th.  Love to all, Carol

Returned yesterday morning after a great trip to Indore.  The patient’s session was fabulous.  It began on the 7th morning in the small hall where members from Pune, Bangalore, Bombay and Indore chapters made presentations – Bangalore (Murlidharan) on their activities with special emphasis on the street plays, Pune (Yashodha) on the activities of Pune chapter and Sanvedana especially the marriage bureau, Mumbai (Kavita) spoke about our activities especially about the therapeutic effects of drama and Indore (Madhavi) spoke on their chapter activities.    Dr. Garima an MBBS from Indore spoke on her life with epilepsy and the work she does with children from the slums.  After the presentations we had a lively interaction with the audience.

The next session (K.S. Mani) had a lot more patients (>100) and the large hall was filled to capacity.  After presentations on prevention of epilepsy, we had patients talk about their lives ( Santosh and Bevinda represented Mumbai) especially with respect to employment.  This was supposed to be a debate with a difference in that no teams were selected for or against an issue – their lives were supposed to reflect whether they thought epilepsy hampered their education/job/marriage/ prospects or not. Unfortunately none of them were married but they stated that independence came first, then marriage.

After this there was ‘Self Expression’ where patients were given 1 minute each to talk about themselves.  This was followed by 1 minute games.  Prizes were then awarded to the winners.

Dr. Nadkarni the organizing secretary of ECon 2010  also arranged trips for us to Ujjain and well as Omkareshwar.  As soon as Saranga provides me with pictures I shall upload them.  ECon 2011 will take place in Ludhiana.  With love and good wishes,

Carol

Christopher has been the motivating force for both starting the Computer training, which I must say is going very well, and training in conversational English.  We had the first class in conversational class at the last SG meeting and I think all of us enjoyed it.  This seems to be something that most members want and need.  If members tell us more of what they need in areas of skill development / knowledge, we will try our best to impart these.  So please get more involved with your Association, love,

Carol

All members are invited for the AGM.  There will be no support group meeting.

We participated at an exhibition-cum-sale at Breach Candy Club held for various NGOs, on the 20th March 2010.  A variety of cards, paper bags, candles and envelopes, made by the members of IEA, were displayed on the table. Our aim, besides putting member’s products on display was also to create epilepsy awareness, and interact with other NGO’s, which was achieved quite well.   Exhibition duration was from 10:30am-2pm and we received a moderate response in terms of sales as this exhibition was open to only Club members.  However it was a lovely experience for all who participated.

P.S. We hope that by now, all members have received the AGM minutes.

The ever enterprising Kavita Shanbhag celebrated Purple Day in her Colony at Matunga.  Dr. Neeta Naik and Dr. Nathan released purple balloons and spoke of the significance of purple day – a colour that the origniators of this day hope would come to be synonymous with epilepsy and help in spreading awareness.  Some NGOs including IEA had stalls where their products were sold over 3 days (Fri-Sun).

On Sat for the support group meeting Kavita brought delectable purple cup cakes made by her daughter Preeti.  At this meeting Carol asked the members questions about epilepsy in general (after attending so many Conquering Epilepsy programs it was time to test their knowledge) and the type of seizures they had.

We will be celebrating birthdays of the month (including Dr. Pravina Shah’s birthday which was on the 6th) on the 4th Saturday ie. 24th April.  On the 11th we will either continue with Q&As on epilepsy or do a stress and anger management session – see ya! Carol

On 10th April the theme of the meeting was ‘Forgiveness’.  Being Easter time Carol spoke of the humility of Jesus (the washing of the feet of the diciples at the ‘Last Supper’) and the parables of the ‘Adulterous lady’ and ‘the prodigal son’; that if we had humility we would not get angry and if we forgave, we would not stay angry.

The 4th Saturday (24th), Yashodha was supposed to speak to us about her marriage bureau; but unfortunately she fell ill and could not make it.  We celebrated the birthdays of the month, Dr. Shah’s, Sydney’s and Carol’s (Manohar & Keyur we missed you).  Most of us spoke of how much Dr. Pravina Shah has changed our lives and given it more meaning.

For those of you who did not come – you missed delicious ‘Aam Raas’, ‘kachoris’, ‘dhokla’, ‘kaju katli’ and ‘pepsi’!

Really inspiring, read what kids belonging to the Epilepsy Foundation of America are doing:

Jackie Quetti of Massachusetts (18 years old) has spoken about
epilepsy at a school assembly, will be featured in an upcoming
newspaper article about her trip to Washington, and is organizing a
fundraising walk.

- Brennan Bayliss-Feldman of Arizona (12 years old) has collected more
than 500 signatures on a banner addressed to President Obama that urges
him to make finding a cure for epilepsy a top priority.

- Carly Stafford of Colorado (16 years old) has written President
Obama, collected 150 signatures on a petition in support of funding a
cure, and is planning to speak about epilepsy to the local Rotary Club.
  She's also made a video that you can watch at
www.epilepsycolorado.org.

- Jillian Youker (11 years old) of Michigan has also collected
signatures on a petition to President Obama in support of finding a
cure and has spoken with many of her schoolmates to educate them about
epilepsy.

- Sisters Dana and Zoey Wade of New York (13 and 16 years old) have
spoken at their school about epilepsy and are organizing a fundraiser.
They've already collected $14,000 (!) and hope to bring in more than
$20,000 when the event is over.

- Jack Dau of New Jersey (age 10) is organizing an epilepsy walk at his
school this month and is working with the New Jersey Epilepsy
Foundation to conduct education seminars for all 750 students in his
school.

Whether you're a kid or an adult, you can help!

I notice most views of this blog are on Sundays, the day after the support group meeting.  Guess people who did not come for the meeting want to know what happened.  As the GC Meeting was brought forward to 3 p.m. instead of 4, I could not be present at the support group meeting.  Regarding the proceedings of the GC meeting, the status of disability certification for people with epilepsy is still not clear.  But steps are being taken to move this forward.  Regarding fundraising initiatives, we will be having another musical programme hopefully in the month of November 2010.  If any of you have ideas or resources for Saturday support group meetings, let us know.  Dr. Urvashi was suggesting another Deolali kind of trip, this one focused on personality development. That’s all for now, Carol

At the last meeting Psychologist, Carol D’Souza explained the ‘Why’ of stigma in epilepsy.  The session was interactive, with members sharing their own experiences of stigma; members spoke about having been brought up strictly not to reveal to anyone about their epilepsy and how this made them feel.

The next support group meeting on the 26th will focus on Epilepsy & Memory.

The day was wonderfully bright as we (Kavita & Carol) journeyed by bus to Pune.  At Pune we were welcomed by Yashodha and Parag to their lovely home.  The fundraiser began at 5.30p.m.  A group of Pune doctors (radiologists, cardiologists, dentists, homeopath, surgeons etc) have formed the LET’S ACT Trust which stands for Life Enrichment through Science Arts & Charity Trust and every year they perform for a different charity.  LET’S ACT has managed to raise Rs. 50 lakhs for charity in the last 10 years.  The doctors performed on all the different instruments normally used in an orchestra.  There were 8 singers amongst them- 5 male and 3 female docs.  Dr. Jagdish Hiremath, Cardiologist, compered the show with  ‘CHANGE’ as the theme – What has changed for the better; what has changed for the worse; what needs to change and what does not need to change – all with humourous powerpoint slides.  2 months before the show the doctors rehearse for 3 hours a day, usually from 10 p.m. to 1 a.m.  And that was quite evident in their splendid performance! Congratulations to Yashodha, Radhika and the rest at Sanvedana for organizing this fundraiser!

P.S. We were also very happy to meet in Pune some of the members of Uttejan – the Thane IPH Epilepsy Support Group.

It’s great that more epilepsy support groups are forming in our country!   Samman in Mumbai,  Sanvedana in Pune, Uttejan in Thane and Samvaad in Nagpur.  On the 13th of June IEA Vidarbha chapter held a vocational guidance seminar.  Dr. Poornima Karandikar sent me the following details:

“It’s the season of results. First it was HSC and then SSC. We see photos and boards of congratulations all around us. But what about those who did not make it to the tenth because of their medical conditions? What about the children with epilepsy, who had to drop out of school because of various reasons?

When epilepsy starts during childhood or adolescence, with proper and timely treatment, the child grows normally and has a life like any other child, with the same challenges and pleasures. However, in some cases, due to various reasons, it may take a longer time to control the seizures. Children might be discouraged from attending schools by non-supportive teachers or over protective parents.  Parents start despairing about their child’s future. The child looses confidence. Parents start thinking of the child as a liability. Due to lack of scholastic accomplishments, the professional options for these children become limited.

Samvaad ( a self help group for people with epilepsy) and IEA, Vidarbha Chapter (Indian Epilepsy Association) had organized an ‘occupational guidance seminar’ or ‘vyavasaay maargadarshan shibir’ for people with epilepsy on Sunday, 13^th June 2010 at CIIMS. Dr. Vilas Dangre was present as chief guest, while Dr. G.M.Taori was the chairperson. Dr. Nitin Chandak (President IEA, Vidarbha Chapter), Mr. Ravindra Gandhe (founder member, Samvaad) and Dr. Poornima Karandikar (Vice-President, IEA, Vidarbha Chapter,founder member, Samvaad) were also present. Experts and entrepreneurs from various fields were present to express the available options in their fields in the form of jobs, services and small businesses. All the talks were focused on options for low scholastic performers. Mrs. B. Ramani (handicraft business-woman) spoke on the vast scope and government facilities in handicraft industry, Mr. Narendra Jog (Catering enterpreneur) on the extensive options available in the food and catering industry, Mr. Prashant Bhandari (Engineer and Insurance Surveyor) on options in automobile industry, Dr. Deepak Dongre (Medical Officer, OCHRI) on courses and options in health related industry, Mrs. Swati Gabhane (Beautician and instructor) on the beauty-parlour industry, Mr. Shrikant Kandge (Entrepreneur and Secretary, Printers Guild) on options in printing industry, Mr. Mukund Paithankar (Computer engineer) on role of computers in various small jobs and how they can be used to create awareness and Mr. Pramod Waratkar (farmer and founder member, Samvaad)on farming as a healthy option for epileptic people. Lastly, Mr Nitin Bajait from Bank of Maharashtra spoke on the availability of small loans from banks for budding entrepreneurs. A small exhibition of handicraft was also arranged at the venue. A booklet, ‘Vyavasaay Margadarshika’ was also released. This contains basic details of several jobs and small businesses which any person who is literate can attempt.

The program was attended by around 100 people. It was very well appreciated. This program is the first step in the process of occupational guidance for epileptics by ‘Samvaad’ . Those who are in need of guidance in this aspect can attend the monthly meeting of ‘Samvaad’ on the first Saturday of any month, at the residence of Mr. Ravindra Gandhe at 5: 30 pm, at ‘Yashashree, 15, North Ambazari Road, Shivajinagar, Nagpur 411010. Volunteers will always be available for evaluation and guidance. For further information, please contact: Mrs Nandini Bal (0 90286 95109)”

I had a wonderful holiday in Goa from the 3rd to the 10th.  It rained but not heavily and we did have bright days too.  Just a week before that Kavita was in Goa with her family too.  Heard that it rained so heavily on the 10th that no one came for the support group meeting.  Let’s hope the weather enables us to meet on the 24th.  If it rains very heavily there is no point risking it and coming to ECell.  If it is raining heavily and you do intend coming give us a call before doing so.  Hey, on the 11th I got an email from a lady from Boston, USA who said that she found our website ieaecell.org very informative.  It sure made my day! Cheers! Carol

On 17th July Dr. Pravina Shah and myself attended the governing council meeting at Ludhiana.  The meeting was held at Life Hotel which is going to be the venue for the next ECon.  The venue is spacious, very green, rooms large airy and bright and has two large swimming pools.  Did not have time to see anything other than the hotel in Ludhiana but I am told Ludhiana is famous for its hosiery – sweaters, wool etc.  So get ready for the next ECon – February 25-27 2011.

Once again due to heavy rains, we could not have our support group meeting.  Hopefully August will be a better month.  Carol

The Mumbai Marathon is scheduled for January 16, 2011 and registrations have opened on July 22nd.  Going by past experience, as the Dream Run gets overbooked, registrations close very early.  Lets run / walk for epilepsy – you will get a new TShirt and Cap.  Give me your names if you want to join this walk.  Carol

Happy Independance Day!  At today’s meeting we spoke about what independence means to us personally and to the country.  Though we are happy to have our independance, it was felt that we should be free from corruption and that even if 10% of politicians were not corrupt, India would be in far better shape.  We also spoke about how we should free ourselves from negative thoughts and the like.  Hope to see more of you at the next meeting on the 28th!

Hi, Inspite of the weather we had a normal attendance. At this meeting I gave a presentation on ‘What can you do if seizures do not come under control’. Have eye witnesses observed the seizures correctly and reported the same correctly to the doctor? How certain seizures may look the same yet their treatments are different. And what are these differences that one should be aware of. It cannot be overemphasized how extremely extremely important it is to have a correct eye witness account of the seizures which helps the doctor make an accurate diagnosis and then prescribe appropriate medications.

Want to inform you that we will be closed on September 11 (2nd Sat of the month) due to Ganesh Chaturthi. See you on 25th September for the next Support Group Meeting! Carol D’Souza

P.S. We are also closed on 2nd September due to Govinda celebrations.

Sanvedana matrimonial meet – A get-together especially for people with epilepsy is being held on 24th October 2010.  For further information and participation contact Yashoda Wakankar at yashoda.wakankar@gmail.com

The epilepsy support group meeting in Thane is on 19th Sept, 4 pm. (that will be at IPH, Hariniwas Circle, LBS Road, Thane.)

A wristwatch-style device may soon help allay a major fear among people with epilepsy: That a seizure could occur without the knowledge of someone who could help. “We are working on a device called the SmartWatch that will detect myoclonic and grand mal seizures within 4-5 seconds after onset and alert caregivers within 7-10 seconds after onset,” said Stanford University pediatric neurology professor Donald Olson, M.D.

SmartWatch detects “certain kinds of abnormal movement, then signals a smart phone, cell phone, e-mail, laptop or other device,” Olson explained. “It can notify a caregiver within seconds that a seizure has occurred.”

The device should allow caregivers and family members both rest and respite, knowing that even in bed at night, the SmartWatch will alert them to seizure activity, he said.

The partners received grant support from the Epilepsy Foundation and the Epilepsy Therapy Project which helped them complete a clinical trial; add Bluetooth, a wireless technology for exchanging information over short distances; and make improvements to software that interprets motion signals.

During the trial, “SmartWatch missed only one out of eight convulsive seizures,” among patients admitted to the Stanford Medical Center for seizure monitoring, Olson said. A small malfunction, since fixed, caused the single miss.

Exhibition Cum Sale of Products made by NGOs: I am pleased to announce that Sanvedana Foundation Epilepsy Support Group Pune has got an opportunity to participate in the exhibition of NGOs in Maharashtra, held in Pune, on 24th to 26th Sept ’10. “Dene Samajache (Contribution to the society)” is an unusual social event for promotion of social organization activities. “Artistry” institute is arranging this event for last 5 years. The main purpose of this exhibition is to make common people aware of this unusual selfless work of NGOs. This is Sanvedana Foundation’s second year of participating in this exhibition. The past events had a grand success & more than 3500 people visited the exhibition, each year . Every year 20 social organizations from different sectors are participating in this exhibition & these organizations gets an overwhelming response & also receives lot of help in various ways. Visitors also expressed their gratitude towards “Artistry” for conducting such an unusual event. One more good thing of this exhibition is: many senior people in Pune likes to donate to some NGOs, instead of buying Diwali Fire Crackers. That’s why this event is always arranged before Diwali. I request you all to visit to the exhibition at Pune’s Manohar Mangal Karyalaya (Mehendale Garage), Erandawane, between 10 am to 9 pm. Exhibition will be on 24, 25, 26 September 2010. To spread this event to maximum number of people, I request you to please forward this mail to your friends, relatives, colleagues & socially aware persons to explore this activity Hope, you will appreciate the concept of the event & will express your desire by visiting the exhibition.

Hi, I had done a course at the Isha Yoga Center in Coimbatore from the 25th to the 28th, hence was not there for the meeting.  I was told that there was a very nice sharing session and a discussion of the next conference which is to take place in Ludhiana in Feb 2011.

As members were not forthcoming on joining the Dream Run for the Mumbai Marathon in 2011, this year I thought I would run for Isha Vidhya.  This is to support Sadhguru’s dream of building a school in every village in Tamil Nadu.  On the 2nd in fact I had gone for a practice session that Isha organised at the Mahalaxami Race Course.  Had a wonderful morning.  Just saw Dabaang this afternoon (3rd)!! See you at the meeting next Saturday. Carol

Hi!  We are planning to raise epilepsy awareness among school children in the months of Nov, Dec & Jan.  For this we send 500 letters to different schools.  At the support group meeting on Oct 9, our members helped in this project by pasting the addresses on envelopes.  We have titled E-STAR which stands for Epilepsy – Student & Teacher Awareness Reachout, and the first two schools we are going to are Loretto Convent in Chembur on the 1st of Nov and Sir JJ School for Girls on the 2nd of Nov.  After that Diwali holidays begin.  After the holidays we plan to go to a lot more schools.  After each talk registration forms for the essay ‘My Friend Has Epilepsy’ is being handed out to the school.  The competition will be in 2 languages English and Hindi and the first five entries from each school will receive an appreciation prize.

On the 23rd we discussed E-Con to be held in Ludhiana.  We hope that a lot of you will join us on this trip.

We are also planning to have something on 17th November, will keep you posted as soon as something is fixed.  Read the page on Coming Events.

Carol D’Souza

The Epilepsy Foundation of America has created a website (GetSeizureSmart.org) with a video and a Get Seizure Smart quiz.  By taking the quiz, or watching the video a person can learn abot seizure reognition and first aid.   Distribute the quiz and help make more people seizure smart!

P.S. Somehow my Firefox is preventing me from taking the quiz! – Carol

 

We got ready for the E-STAR program by sending, in the month of October,  letters to 500 schools in Mumbai asking them for an opportunity to create epilespy awareness at their schools in the months of November and December.  So far we have a good response.  The first school we went to was Loretto Convent, Chembur.  The program is in 3 parts, it starts with a small talk, then we show a short 15 minute film and this is followed with a talk on my experiences with epilepsy.  Today we went to Sir J.J. Girls’ High School at Fort.  At both the schools the girls were very attentive.  This can be seen in the pictures.  At the schools we also announce an essay competition on ‘My Friend Has Epilepsy’.  This is to further sensitize the students.  This competition is being sponsored by UCB Pharma.  Students at both schools were eager to participate in this competition and so far we have given over 60 forms to them.  Really encouraging! Carol D’Souza

We will be celebrating National Epilepsy Day at Krishna Palace, Haveli 1.  This celebration is especially for members and their families.  If you have not yet informed me about your attendance, please do so.  See ya, Carol

Krishna Palace, Haveli 1&2: The evening started at 6 p.m. with a happy mingling of members accompanied with soft drinks and snacks.  Fun and games (four corners  and musical chairs) which was enjoyed by the young and old followed.

At 7.30 p.m. Kavita Shanbhag started the formal program with a prayer.  Our President Dr. Bhim Singhal then addressed the audience appreciating the work being done by Dr. Pravina Shah and her team.  Dr. Pravina Shah welcomed everyone and announced that national awareness this year was focused on children and women with epilepsy.  A presentation by Carol D’Souza on the current work being done by our Association followed. It focused on the E-STAR program (Epilepsy Student & Teacher Awareness Reachout) being conducted at various schools in Mumbai, the Rural Camps and Support Group Meetings.

We then felicitated our supporters – Dr. Wagle, Dr. Dhruv and Hemaben for their support in conducting the Rural Camp.  Of course if it were not for Hemaben and Ashokbhai who provide us with the infrastructure, these camps at Pen would not happen.  Ruchi Saxena on behalf of UCB Pharma for their tremendous support to us these last two years and Dr. Joy Desai were then appreciated.  Samman member Ashish and his newly wedded wife Bhavna and Sharvari Khot whose birthday coincides with NED were given gifts to a rousing applause.

What a woman with epilepsy and her caregiver go through was then aptly brought out by Kavita Shanbhag with her mono act.  Her portrayal was so real it brought tears to our eyes.  Dr. Pravina Shah then had a chat with women with epilepsy asking them questions which brought out the challenges faced by them epecially with regard to coping after onset of epilepsy, education, getting employment, finding eligible suitors and getting married.  This was totally unrehearsed and the women spoke from their hearts. We ended the formal program with the Samman theme song ‘Sun, Sun, Sun’.

A sumptuous vegetarian dinner followed.

We (Dr. Pravina Shah and I & Rohan from UCB) reached the school at Bhandup well on time and met with the very kind and curteous Vice Principal.  The program began at 2.45 – After the Vice Principal introduced us, Dr. Shah spoke a little about epilepsy and why we are educating school children.  We then showed the film Epilepsy – The Untold Story after which Carol conducted a quiz.  The student were very attentive and rightly answered the quiz.  This was followed by a lively question and answer session.  Carol then spoke about her own experiences with epilepsy which motivated the students to register for the competition ‘My Friend Has Epilepsy’.  UCB carried 100 registration forms and they were not enough! Hopefully all of them will send their essays!

We all had a very enjoyable time at the last meeting.  After exercises we played a memory game; then Carol asked each member to speak on a topic which she chose, for a minimum of 1 minute or a maximum of 5 minutes.  Members spoke intelligently on topics that ranged from ‘Corruption’, ‘Yesterday – 2 days ago’, ‘Bollywood’, ‘My favourite food’, ‘Ganpati’, ‘Cricket’, ’My last E-Con’, ‘Police Riots of the 80′s’, ‘My Passion’ and I was asked to talk on ‘When my daughter left for Singapore’.  We will be having the salad making competition next meeting on 11th December.  The Christmas party will be held on 18th December (tentative date, yet to check with Dr. Shah) or may be we will just have a new party on 8th Jan!. Carol D’Souza

Today children of Modern School were made aware of facts about epilepsy.  The hospitality shown to us by the school principals of the Gujarati and English medium schools was warm and friendly.  I was impressed with the work being done in the school to educate their children in all spheres of life.  This was a small school in Sicka Nagar not very far from Charni Road station.  As usual the children were eager to take part in the essay competitions and answered the quiz with zeal and vigor.   Carol D’Souza

Once again it was a pleasure to take part in the Indus International Festival of Charity held for NGOs.  A wide choice of handcrafts, gifts, books, CDs and household items were on sale, as well as delectable homemade food items.  There was also a kiddies corner for children to keep busy.  Our members were happy to put their products on sale and had fun during the day as the pictures below indicate.

It was a pleasure talking to the students and teachers of the Devji Nanji Kania & Lalji Velji Anchorwala High School situated in Chinchpokli.  Students eagerly attentively watched the film and eagerly answered the quiz.

On 10th I had to travel to Powai to the SM Shetty International school.  Here I spoke to students from the secondary section.  They participated well and I was happy with their response to the quiz.  Hopefully they will participate in the essay competition as well.

At 2 p.m. Sharvari & Tanvi were the first to start on their salad; soon the others followed.  The pictures tell it better than words! We were happy that Vinita consented to be our judge.  She had taught our members how to make salads and powdered masalas during the Early Intervention Training program.  Everyone had a good time – especially when it came to eating the delicious salads!

Compliments of the Season!  The last medical camp of the year was held in Pen on 19th December.  Christopher dressed as Santa and distributed chocolates to all the kids not only the ones who came for the camp but also at the Child Haven Orphanage.  The year ended on a good note for those regularly attending the camp as many have, over the past 3 years,  brought their seizures under control.  A couple of them have had successful surgeries at KEM Hospital and some of them have gotten married.  Best Wishes, Carol

The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

The Blog-Health-o-Meter™ reads This blog is doing awesome!.

Crunchy numbers

A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 1,400 times in 2010. That’s about 3 full 747s.

 

In 2010, there were 35 new posts, growing the total archive of this blog to 76 posts. There were 12 pictures uploaded, taking up a total of 8mb. That’s about a picture per month.

The busiest day of the year was September 20th with 30 views. The most popular post that day was Vocational Guidance Seminar – Vidarbha Chapter.

Where did they come from?

The top referring sites in 2010 were mail.yahoo.com, ibe-epilepsy.org, epilepsyindia.org, epilepsysupport.aarogya.com, and alphainventions.com.

Some visitors came searching, mostly for manjari tripathi, ecellin.wordpress.com, shailaja subramaniam, dr urvashi shah, and epilepsy in aiims.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

Vocational Guidance Seminar – Vidarbha Chapter June 2010

E-OPDs May 2009

Coming Events November 2008

About Us October 2008

E-Cell Activities November 2008

Our first meeting this year started with a prayer.  We then played the introduction memory game.  What followed was a ”3B Party” – Bingo, Batatawadas and Barfi party.  We also played musical chairs.  Little Sharvari (Ashwini’s niece) boldly sang many songs for us – but her mother described her as Shy Sharvari.  T’was a good start to the New Year! Carol

On the 7th and 10th of January we had two awareness programs at Seventh Day Adventist School, Sanpada, Navi Mumbai and Podar International at Sea Woods.  Children were very receptive at both schools and wanted to participate in the essay competition ‘My Friend Has Epilepsy’.  The epilepsy quiz which we show on powerpoint after the film ‘Epilepsy The Untold Story’ reinforces their learnings and stimulates their thinking. So far we have been to 9 schools in the months of Nov-Jan.  We hope to do more in 2011-2012.

Yesterday I did the 6km run with the Isha Vidhya group.  The aim was to collect money to build a rural school – and we collected Rs.40 lakhs!  We gathered at Azad Maidan at 8 a.m. and moved out only at 9.15.  It was quite a spectacle at Azad Maidan as people had come in masquerade / fancy dress.  There were even prizes given for the best dress.   NGOs found creative ways to make their name stand out.   Unfortunately I did not take my camera.  One really cannot run as there are a lot of people and one has to walk with the NGO to which one belongs.  As we came out of the maidan we were greeted by John Abraham, Vivek Oberoi, Chhagan Bhujbal, Anil Dharkar etc. who were on specially set up stages at the side.  Along the way there were live bands or music.  Sounds of Isha live played on Marine Drive – and they were awesome! Next year we should do the run to raise funds for the IEA, Bombay Chapter. Hope you’ll will all join!  Carol

P.S. Today is my 20th wedding anniversary and I and my husband are off to Coorg – will be there for the next 10 days.

I was on holiday and could not attend this meeting which was conducted by Kavita.  I believe it was a good session where our members were asked to enact their responses to different situations.

I enjoyed my holiday but was deeply saddened to hear about Sydney.  I was also very very sad that I could not be there for Sarah during this time.  I returned on 28th night and visited Sarah on the 29th.

Sydney, who has been our life members since March 2000, passed away on 26th January, 2011 at the age of 64.  Below is his story in his own words. We will miss him deeply.

“Though born of Jewish parents, I have always lived in India, Mumbai to be precise. My entire life I have lived with my mother and epilepsy, and both have had a profound impact on me.

My mother is the kind of person who never gives up. She always sees what is good for me and urges me to take it on. I attended a school for Jews till the age of 10 and for the next 20 years was a boarder at the Jai Vakil School for special children. There I learnt about colour combinations, how to weave, paint etc. Though I don’t consider myself successful financially, very independent or even able to do a lot of different things, I still consider myself a contributing member to society. I paint cards and pots and sell these to friends and family.

I have accepted my epilepsy but what I don’t like about it is the fact that I am unable to travel alone. As you can imagine this limits my freedom tremendously. I have had epilepsy from the age of one – my seizures were quite severe and frequent till I was put on a new drug (in February 2010 my seizures were totally under control). Being of heavy build I tend to injure myself whenever I fall and this has made my mother all the more protective about me. I love meeting people but have limited opportunity to do so.

I joined SAMMAN the epilepsy support group soon after its inception in 1991 and attended meetings for a few years. Then once again I started attending meetings in 1999 after the E-Cell was set up, fortunately close to my home. My mother and I are both very involved with the group. We teach as well as learn art and craft. However, I don’t like it when group members talk about their epilepsy. I like to focus on other things, to joke and have fun. I am also a movie buff and can watch 2-3 movies a day! My mother tells me I have a very good memory as I can remember things that happened many years past, as well as the different movies and people who acted in them. I am also fluent in English, Hindi, Marathi and Arabic.

In my life, I have been depressed many a time and have found that professional counseling always helps. In fact after I received regular counseling at E-Cell my seizure severity and frequency have gone down. I now get mainly auras and can look after myself pretty well when this happens. E-Cell is my second home – I love to go there and help around whenever I can. In fact it gives me great happiness to be of help!

The constant support I receive from my mother no matter what my mood makes me what I am today. Life has not been easy for her. She is now getting on in years and suffers from severe asthma and arthritis. Often the role gets reversed with me looking after her, which I am most happy to do. Yet it is her jolly disposition and positive outlook that keeps me going.

The Jewish proverb ‘God could not be everywhere and therefore he made mothers’ rings so true.

Uttejan (Thane epilepsy support group) which means “positive reinforcement”  celebrated its first anniversary today at IPH Thane.  Uttejan is basically run by 4 parents who have children with epilepsy: Dr. Mrunalini Palshikar, Mrs. Alpa Chande, Dr. Ashwini Marathe and Mrs. Rema Ramchandran – all very dynamic women.  Yashodha’s father Dr. Achwat spoke and sang and gave wonderful advice, as did Dr. Nadkarni.  Various persons were felicitated and persons with epilepsy spoke how this past year has made a positive difference to their lives.  It was a wonderful even which started with breakfast and ended with the film: Epilepsy the Untold Story and lunch.  Best wishes to the Uttejan team! Carol

On the 12th we discussed the forthcoming trip to Ludhiana for our national conference.  14 of us are going – down from the initial 19!  After the support group meeting we visited Sarah.  Neuropsychologist Dr. Urvashi Shah had come for this meeting and our members were happy to catch up with her after a long time.

Please note that there will be no support meeting on 26th Feb as we will be in Ludhiana.  Our next SG meeting is on 12th March.  See ya, Carol

 

Dr. Gagandeep needs praise for his organizing skills.  He and his team hosted an enriching academic and social program.  The two gala dinners given at the conference were the icing on the cake.  The night at Haveli in Jalandhar (25th) showcased the rural life of Punjab along with Punjabi dance and song.  26th was the grand inauguration with a wonderful magic show, cocktails and dinner.  The day (27th) attended by patients and caregivers had sessions on epilepsy and the media, an oration by Dr. Urvashi Shah on Epilepsy – Beyond Seizures and a debate on Should status of epilepsy be disclosed or not.   On the 28th, 31 of us went by bus (14 from Pune, 13 from Mumbai and 4 from Bangalore) visited the Jalianwala Baug, Golden Temple and Wagah border in Amritsar.  All in all an enriching experience!

Hi! This blog has really helped me / the Association keep a record of all events. At our meeting on the 12th each one spoke about his/her relationship with God.  Where do we feel God lives?  Does God listen to our prayers? How and when do we pray etc.?  It is always nice to get different views.  At our next support group meeting on the 26th we will plan our activities for the new financial year 2011-12.  I hope all our members will be there for our Annual General Meeting on the 28th at 5 p.m.

On the 22nd and 23rd Kavita and I attended a workshop in Nagpur, held to discuss the amendments to the 1995 Rights of Persons with Disability Act.  We impressed upon the hosts that Drug Resistant Epilepsy should be included not only in the list of disabilities but also under ‘Reservations’ for jobs.  This was accepted.  The new act will have to be passed by Parliament before it comes into effect.  Will keep you’ll posted. Carol

 

We had a very fruitful support group meeting.  We discussed our forthcoming activities for the year and have come to the conclusion that in addition to the rural camps, support group meetings, providing medicines at a discount, counselling, special education etc. we should focus on  ’epilepsy rehabilitation’ through a structured day program which also involves a learn and earn module.  We hope a lot of members will find this useful and join this program.  We also celebrated birthdays of February (as we were away in Ludhiana during the 4th sat feb meeting) and March.  Salil and Shirish cut the cake.  Kavita was celebrating Purple Day and so could not make it.

We had a good annual general meeting at ECell which began at 5 p.m.  Minutes of the meeting have already been done and will be emailed / posted to members shortly.

After the meeting we surprised Dr. Pravina Shah by bringing out a cake for her to cut (her birthday is on 6th April).  Many played musical instruments while we sang Happy Birthday after which we all proceeded to the nearby Shetty’s Restaurant for Pao Bhaji and Lassi.  Carol

We started the life skill training program yesterday (6th April) which also happened to be Dr. Shah’s birth day.   We start with Paramahansa Yogananda’s superconscious exercises.  This is followed by pranayam, chanting and meditation.  Participants are then asked to read the newspapers and give their understanding of the same.   We then decided what the rules were going to be.  They were decided as follows:

1. Participants would come in at 11 am and leave at 3 p.m.

2. Charge for the month would be Rs.300 per person.

3. If participants came on time, kept good hygiene and good behaviour they would receive an appreciation gift of Rs.50 by the end of the month.

4. Twice a week participants would make products at ECell and these would be bought by IEA Bombay Chapter.

Today after exercise and meditation and newspaper reading, participants have helped mail the AGM and Minutes to those members who do not have email IDs.

As the holiday season is nearing, last Saturday (9th April) at our Support Group meeting after exercise and introduction, we spoke of our best and worst holidays!

87 people attended the rural epilespy clinic held in Pen.  Pen is oh sooo hot! Thank heavens for the nice AC hall we have to conduct the clinic.

Our life skill training workshop is progressing well and we would like more people to make use of it.

On 26th April, 2011 at 3.oopm at Nalanda Hall, Ground Floor, Time Of India Building, CST Epilepsy Foundation is having A Special Quiz on Epilepsy by Dr. Nirmal Surya followed by Street play on Epilepsy by Roop Kala Theatre, Mumbai.

He invites you all to attend the Programme.

Dr. Pravina Shah had arranged for a lecture to be given by eminent orthopedic surgeon and knee joint replacement expert Dr. Milind Sawant or Arthritis.

Dr. Sawant began by asking our members if we knew what arthritis was about.  Understandably it was Dr. Buch who answered most of Dr. Sawant’s questions.  Dr. Sawant explained the difference between bone pain which indicated osteoporosis and joint pain which could be arthritis.  He told us what could be done to prevent arthritis and also spoke about osteoarthritis. We were very thankful to him for taking the time to come all the way to ECell, from Mulund, to give us this insightful talk.

Tomorrow we are having a workshop at ECell from 2.30 to 4.30 p.m. on “Let’s Change Our Lives” to be conducted by Counselling Psychologist Carol D’Souza.

Everyone said they benefited from Yoga Consultant Shilpaben Joshi’s talk on Spirituality in daily living. She spoke in a simple easy to understand manner about the importance of ways to control our thoughts – the cause of all problems.

Yesterday the National Association for the Blind had an educative program for their teachers from different states in India. They had given us 2 hours to educate these teachers (30 of them) about epilepsy. Dr. Sushil Tandel and I had gone for this program. The teachers who reported that many of their multiple disability patients had epilepsy had lots of questions for Dr. Tandel. We were indeed thankful to be given this opportunity. Carol

Hi, we had enjoyable games on the 9th. Akshay Puranik was the winner, but Anita, Yasmin and Raju were not far behind. Shubha Joshi and Mrs. D’Cruz won Mrs. Puranik and myself hands down. Hope to have many more participants when we next have the tournament.

We have started giving members packing work to do at ECell and they are paid according to the work done. This is going very well.

Today we have a session at NAB to educate their teachers working in East India. Best wishes, Carol

20 teachers from Jharkhand, Bihar, Orissa and Chhattisgarh learnt about epilepsy. These teachers work at different NGOs for children with multiple disabilities, blindness or low vision being one of them. We first showed the movie ‘Epilepsy The Untold Story’; this was followed by a quiz and a very interactive session with Dr. Pravina Shah. We were very happy by the teachers’ enthusiasm to share their experiences in dealing with epilepsy. Carol

Last Saturday, Kavita Shanbhag conducted a session on Art Becomes Therapy. The theme was ‘monsoons’. It was about drama, song and dance and not painting. She is going to conduct regular sessions at ECell on weekdays, so if anyone is keen on joining please contact her. Carol

The theme for tomorrow’s meeting will be ‘Freedom’. Meeting to be conducted by Kavita Shanbhag and Carol D’Souza. We will also party and have fun! Carol

At our Support Group meeting on the 13th, we celebrated Friendship Day and all of us went home with gaily decorated hands. At the meeting we spoke of the good we saw in group members. Some members had written down prayers / poems dedicated to others.
On the 21st Kavita and I were invited to attend a meeting conducted by the Nagpur Chapter to install their new Office Bearers. Many of their people with epilepsy spoke at the meeting with power point presentations of the work they individually do. Needless to say both Kavita and I left Nagpur very impressed. Kavita and I were both felicitated at the meeting for receiving the Outstanding Person with Epilepsy Award and the Ambassador for Epilepsy award. I was a Guest of Honour and Kavita was invited to speak on ‘Atma Samman – A way of life’ Some photos sent by neurologist Dr. Poornima Karandikar, their new President who organised the meeting, uploaded below. Carol

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When you think of Dr. Pravina Shah it’s not just an esteemed neurologist that comes to mind but also a wonderful human being: compassionate, dedicated and sensitive to the needs of others. As she recalls when she began practice, it was the challenges that her patients faced in the social sphere that tugged her heart. The Social Accomplishment Award given jointly by the International Bureau for Epilepsy and the International League against Epilepsy, to one person every two years, is in recognition of her life’s work in the social field.
She has empowered people with epilepsy by pioneering the support group movement in India. In 1991 when she started the support group Samman she held meetings in her own home. Since 1998 meetings have been held at ECell, our epilepsy center, situated in the heart of Mumbai city which was set up by Dr. Shah. Additionally the Mumbai Chapter offers counseling and psychotherapy, special education, yoga and conducts training and awareness programs at ECell. Her involvement with ECell continues to date and it has been her dedication and leadership that has inspired many people to support her in this cause.
To further improve the acceptance and quality of life of people with epilepsy she educated patients, caregivers and the public especially school children as she believes young minds are open to new ideas. She has also organized education programs at various hospitals in Mumbai. She was part of the faculty for the “Epilepsy Control Programme for District Level Officers” at NIMHANS, Bangalore. Various workshops she has organized in Mumbai have focused on ‘Child Remediation’, ‘E-Education for Paramedicals and Caregivers’, ‘Epilepsy & Marriage’, ‘Epilepsy & Employment’, ‘Epilepsy & Women’ and personality development through art, drama and counseling.
To help in the education process, early in her career she authored the book ‘Epilepsy Facts’ ‘Mirgi’ and ‘Vaino Rog’ and published pocket cards, pamphlets and newsletters. She made a documentary film on Epilepsy with noted film director Shyam Benegal which was translated in 14 languages and aired on the national network. In November 2009 as President of the IEA, she ran a national campaign on ‘Prevention of Epilepsy’. In Mumbai she organized a press conference which resulted in 10 press articles in leading dailies. She also got a pharma company to sponsor a full page ad on National Epilepsy Day ’09 in the Times of India which appeared in 5 metro cities. The sponsored page covered different aspects of Epilepsy and was written by various Indian Professionals.

To alleviate the financial burden of patients she started the ‘Adopt A Patient’ project in 1995 which continues to this date. At E-Cell, AEDs are given at a subsidized rate to members of the Bombay Chapter. On 18th November 2007 she conducted the first rural epilepsy camp in Pen, Raigad District. Since then a camp has been held there every 6-8 weeks and medicines distributed free or at a nominal rate. Approximately 90-100 patients attend each camp and Dr. Shah sees each and every one of them.

Dr. Pravina Shah is a deeply spiritual person, whose work has mostly been with the poor and marginalized. She started her career at BYL Nair Hospital where she put in 7 years and left to join KEM Hospital as Professor & Head of Neurology a post she held for 19 years. She currently consults at Fortis Hospital, Mulund.

At the end of the day I am sure I speak on behalf of all her students, patients and colleagues that she is the most approachable teacher/doctor/co-worker; a friend, philosopher and guide.

- Carol D’Souza

At the last Support group meeting on the 10th the theme was the celebration of Ganpathi and the group colorfully painted Ganpathis. A few days later the H.R. College (FYJC rotaract students) requested us for permission to organize a colouring competition for our members. The competition was held today and our members were happy to participate as can be seen from these pictures.

Results of recent psychological testing indicated that our people with epilepsy have strong feelings of helplessness. Therefore at the last support group meeting I conducted a session focused on ‘From Helplessness to Control’. As a guide I used Paramahansa Yogananda’s talk on ‘What is Fate?’ Knowing that one session will not bring about control, starting last Monday we start our day with the Isha Kriya meditation followed with sharing and counselling. I am hopeful this will lead to some improvement. Carol

Dr. Pravina Shah had invited members over to her home to celebrate her winning the Social Accomplishment Award. More than 50 of us (many members came with their families) gathered at her home to celebrate and thank God for giving her to us. It was very emotional for all as Dr. Shah recollected her journey over the last 40 years and many members narrated incidents when they were helped in special ways by Dr. Shah. All of us immensely enjoyed the hospitality shown to us by Dr. Shah and her husband. Carol

We had put on sale diyas that were painted by members who regularly come to ECell. The response was very good and most of the diyas were sold before the meeting started.

At the meeting we gave sheets of papers to each person and asked them to write down their strengths. These sheets were then collected and redistributed amongst the members. Each person was then asked to read his/her sheet aloud and the rest guessed the name of the person who wrote it. We all enjoyed the session and now that we know each person’s strengths, we can utilize them effectively! Carol

P.S. We shall have a Diwali party on the 22nd. Come and have fun!

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After pre-Diwali cleaning at ECell on the 21st, where all members chipped in we decorated ECell with twinkling lights. We had the rangoli competition and then celebrated at Shetty’s Restaurant which is conveniently located few steps away from ECell. These days we are busy practicing for a dance to be performed on the 19th of November. See you there at Krishna Palace. Carol

Such a pleasure to see our members so happy! For the last few days including last Saturday Divya from Shiamak Daver’s Institute has been teaching our members to dance to modern Hindi songs. Be sure to come on the 19th to Krishna Palace to see them!
We are getting all ready for our Press Conference tomorrow at the Press Club and after the next two days (16th and 17th) we are having an awareness program at Phoenix Mall from 1 pm to 8 pm. All are welcome.
Carol

Our awareness cum celebration programs began with a press conference on the 15th of November at the Press Club, Mumbai. Much preparation went into this. After the press con we got articles in the Indian Express, Maharashtra Times and Sakal newspapers.
16th and 17th we had an awareness drive at Phoenix Mall. They gave us a place outside Croma to set up our table. Tamana, Christopher, Nikhil, Nitin, Kavita and Keyur did a good job of spreading awareness. Kavita as ususal was of immense help seeing that the infrastructure was in place.
On the 18th, our young dancers had their last practice and were all set for the celebration on the 19th.
The staff, food and hall were all excellent at Krishna Palace. 120 people were present at the celebration which began with a prayer by Kavita, followed by a welcome address by Dr. Singhal. Dr. Joy Desai then gave an informative and helpful talk on ‘Epilepsy & Teens’which is the theme for this year’s awareness drive. Carol D’Souza then spoke of the reason for the celebration E 40-20 i.e. 40 years of Indian Epilepsy Association and 20 years of Samman our epilepsy support group. Felicitations followed – Santosh Tholar and Keyur Vaghela received the Epilepsy Achiever’s Award and Sachin Khot received the Caregiver of the Year Award. Santosh had made a beautiful collage for Dr. Shah and an album of her journey from early days at KEM Hospital to date and Dr. Pravina Shah was felicitated and presented with these. The celebrations ended with a dance by Samman members and the rest of the audience joining them at the end. The evening ended with the sumptuous buffet. Look forward to many more celebrations …… Carol D’Souza

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Epilepsy week is always a time to raise awareness and celebrate. This year there were two reasons to do so: IEA completed 40 years and SAMMAN our epilepsy support group completed 20.

Epilepsy awareness programs in Mumbai began on the 13th of November with a program organized by the epilepsy team of Kokilaben Dhirubhai Ambani Hospital, at their hospital in Andheri.

On the 15th November IEA Mumbai Chapter organized a Press Conference at the Press Club Mumbai. Dr. Pravina Shah spoke on Epilepsy Management & Treatment whilst Dr. Urvashi Shah addressed the psychosocial aspects of epilepsy. Carol D’Souza then enumerated what the IEA / Samman has achieved in the last 40 / 20 years. 18 persons from the media (print & TV) attended this event, after which we got coverage in the Indian Express, Maharashtra Times & Sakal newspapers.

On the 16th of November a radio interview with Kavita Shanbhag was aired on Rainbow FM News channel. This is a Marathi channel which has a large rural and urban reach in Maharashtra. And on the 16th and 17th of November we had an awareness drive at Highstreet Phoenix, a large and busy mall in Mumbai city. A lot of people enquired about our activities and were given leaflets and brochures.

The Epilepsy Foundation held awareness campaigns at the two busiest railway stations: Churchgate & Chatrapati Shivaji Terminus (formerly VT) on the 17th of November. The same day they also had street plays at different timings at Dadar, Dadar TT, Andheri, Ghatkopar, Borivli and Thane.
Two other support groups had events: ‘Uttejan’ held an all Maharashtra Talent Contest for people with epilepsy and ‘Protsahan’ held an epilepsy awareness program in Dombivli.

The week ended with the E 40-20 (40 years of IEA and 20 years of SAMMAN) celebrations at Hotel Krishna Palace on 19th evening. This program was both informative and entertaining. Dr. Joy Desai spoke on Epilepsy & Teens enumerating the special problems faced by teens with regard to studies, staying up nights, taking up sports etc and suggested ways in which teens are can meet with these challenges. Carol D’Souza presented on IEA Bombay Chapter’s achievements these past 40 years; how after the formation of SAMMAN, having patient volunteers and a place (ECell) we were able to increase our activities manifold and are today able to offer Counselling, Special Education, Yoga & Meditation, Support Group meetings, Medicines at a discount, Sheltered work, Skill training and Rural epilepsy clinics. Dr. Ravin Thatte who is an activist, author and cosmetic surgeon gave us insights on how to refuse to be unhappy. This enlightening and practical talk was a good morale boost for persons with epilepsy, their families and professionals. There were awards and felicitations as well. The ‘Achiever of the Year’ award went to Santosh Tholar and Keyur Vaghela. Santosh in spite of his seizures has adapted to the demands of running a publishing and printing business whereas Keyur recently got his Bachelor of Arts degree overcoming great challenges. Sachin Khot who is married to our own ECell caretaker Sharvari received ‘The Caregiver of the Year’ award for the loving support shown to his wife over the last 3.5 years. Dr. Pravina Shah was felicitated by Samman with a shawl and a specially designed album which photographed her journey from her days at KEM Hospital to current day. Samman also presented her with a collage of photographs which had the words ‘Thank you for being with us’. It was a joyous moment for all of Samman when earlier this year she was given the Social Accomplishment Award. Many of our other supporters were given roses in appreciation. The highlight of the evening was the dance performance by Samman members to popular Bollywood numbers ‘ChamakChalo’ ‘Chance Pe Dance’ ‘Darling’ and ‘Om Shanti Om’, with everyone coming on the dance floor at the end of the last number. A sumptuous buffet dinner ended the perfect evening.

We had the party early this year as we will not be having a meeting on 24th Dec which is the 4th Saturday (Kavita has invited all for her book launch on that day). All the Catholics in the group shared something about Jesus Christ and the circumstances of His birth. We then had a game where the group was divided into two teams and were given alphabets. They were asked questions like “What was Jesus’s mother’s name” and they had to form the answer holding the relevant alphabets in place. We also celebrated Saranga’s birthday – she brought so much for us to eat!! Really MISSED Sidney Santa this year. He must be celebrating in heaven.

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We celebrated Christmas at our rural Clinic at Pen as well. This year Tamana our Santa Claus was most happy to distribute gifts to all the patients, on her first visit to Pen. Around 95 patients attended this Clinic. After the Clinic some of the members along with Santa went to the Orphanage nearby and distributed chocolate packets to all the children. We ended the year well with 70-80% of patients becoming seizure free / seizure frequency much reduced. We also appreciated all the workers at Pen who help at the Camp and provide us with our meals. Wishing you a happy and healthy 2012. Carol