The meeting started with prayerful silence for the late Dr. Manubhai Kothari, Sarah Sharma and Mandar Kadam. Dr. Pravina Shah then spoke about the Diwali festival. This was followed with a Diwali quiz and party games and snacks which was well organized by Mr. & Mrs. Alate.
Our organization has taken part in 3 Exhibition cum sales recently – at St. Joseph’s Convent Monsoon Mela on 28th September, Bhavans College Andheri, Bank of Baroda ‘Shakti Anand Mela’ on 13th October at their Bandra Kurla Complex Corporate Center. Christopher has been instrumental in the participation at these exhibitions cum sales.
We hope to see all of you at our AGM on 5th Nov at 4.30 pm.
7 Samman members met at E Cell at 2pm. Half an hour later we walked to Mani Bhavan at Gamdevi, where Gandhiji learnt spinning and carding from a carder who used to pass by Mani Bhavan everyday. It is one of the few important places hallowed by Mahatma Gandhi’s close association.
We were fascinated with the evolution of the Indian flag, the picture gallery and Gandhiji’s room on the second floor. We socialized had a good time with each other as a group. We read and saw sculptors, young India along with Gandh’s historic fast. By 4 pm we departed Mani Bhavan,with a lot of knowledge.
Amazing turnout! 35 persons (members, caregivers) present at today’s meeting. Keep it up.
Dr Swati was invited to speak on issues related to hypertension, thyroid, diabetes, and the necessity to have a balanced diet and regular meals. She also emphasized the importance of vitamins C & D for people with epilepsy. We appreciate and thank her for taking the time to enlighten us.
Birthdays celebrated was Ronak Joshi’s (6 July), Christopher Fernandes and
Dr Bina Sawant (25 July). However Bina was unable to attend the meeting. We also celebrated Shenaz Haveliwala winning the Outstanding Person with Epilepsy Award. She will be going to Singapore for the Asian Oceanian Epilepsy Congress around 7th August, to receive the award.
Just returned from a lovely holiday in Goa, where coincidentally I met Dr. Pravina Shah who was staying in a hotel just opposite my resort, and decided to update my blog. Led by Christopher, people discussed their epilepsy related needs and felt that there should be talks on the following issues:
Updates on Epilepsy
Adjustment in joint family
Adjustment to marriage and taking responsibility
Surviving with epilepsy
Problems of travelling and fears of people taking advantage of the pwe during a seizures
Fear of withdrawal of support from family friends relatives in event of seizures worsening
Problems related to loss of memory
Phobia of talking to people without epilepsy
Epilepsy and getting Married- a prevention of taking responsibility – a moral problem
Employment and Epilepsy – Discrimination
Guidence to members who have other ailments like hypertension diabetes or any other along with epilepsy regarding diet exercise etc
Dr. Pravina Shah felt that we should try and arrange these talks, make a time table, and inform people about the topics in advance.
Additionally members felt we needed an outing / picnic for people with epilepsy and their caregivers. Members also felt we could have an EPILEPSY AWARENESS WALK.
Six of us from Samman: Dr. Pravina Shah, Carol, Christopher, Shenaz, Mahesh and Minal conducted the last rural camp in Pen. What made this one special was that Samman Association sponsored it. It benefited78 patients who were given medicines for 12 weeks. The next camp will be held on 24th August.
Since my last post we have had two celebrations at Sarah’s home. A small group of us celebrated Tanvi’s birthday on 30th May and we had another celebration for Minal and Mahesh on last Saturday the 14th. Both we thoroughly enjoyed.
Dr. Sangeeta Ravat and Dr. Urvashi Shah organised the support group meeting on 9th May at KEM Hospital, Parel. 150 patients and family members and 12 regular SAMMAN members attended. Dr. Shubha Patkar the Dean of Seth GS Medical College KEM hospital was the Chief Guest. Neurologist Dr. Sangeeta Ravat and Neuropsychologist covered the basics and psychosocial aspects of epilepsy. Dr. PU Shah spoke on Samman and was followed by Dr. Parkar’s talk on coping strategies. An interactive Q&A session ended the program. Snacks and tea were also served.
Today we celebrate Mahesh and Minal’s wedding. A joyous occasion for Samman. We wish them a long and happy married life :)
Last Saturday meeting those of us attending the Soul Healing sessions every Thursday shared our experiences. We look forward to more people attending these.
Hope all of you managed to vote!
On the 22nd our members were in for a surprise! All were given surprise gifts courtesy Sarah Sharma. We all had gone to Sarah’s home to celebrate her birthday. We had a super time.
Every Thursday Master Sarosh and Dr. Bina Sawant Khan teach us Divine soul healing and we are having amazing results. God bless them both.
8th being Women’s day we will be sharing about the women in our lives who have inspired us. If you cannot make it for the meeting you can send the same via email and I will read it to the others. the same day after the meeting few of us will be leaving for Pen to help out at the rural epilepsy clinic. Carol
We celebrated Christmas and the coming new year with a lunch party at Sudama Restaurant at Krishna Palace. Each of the 24 persons present enjoyed a hearty meal. Donations for this purpose mostly obtained through Sarah made this possible. Thanks Sarah!
On the 14th of December at our Support Group Meeting, Bina Sawant brought teachers who taught us how to use the Sha’s Golden ball for the purpose of healing. This uses soul power, mind power, body power and sound power. Twice a month they have healing sessions at Mhatre Pen building Dadar.
On 22nd Dec we had our rural epilepsy clinic which once again was well attended. This time Lupin Limited brought EEG technicians and machines. They were very impressed with the Clinic and promised to help out again. About 100 patients attended this clinic.
On the 11 of Jan our Support Group Meeting will be held at Kokilaben Dhirubhai Ambani Hospital, Andheri. All are requested to attend.
Had a fun day today at the Indus Festival of Charities which is excellently organized on the 1st Sat of December every year for various NGOs to sell their products. We ate a lot!! And bought a lot!! And sold a lot of our products too. Took home the most delicious pecan pies:). Thank you Indus. Carol
The book Conquering Epilepsy edited by Samman member Carol D’Souza, was launched on 21st November, 2013 at Hotel Krishna Palace by eminent Neurologist Dr. Noshir Wadia. Dr. Wadia congratulated Carol D’Souza for putting together a book which would be helpful to all neurologists, their patients and anyone going through a difficult time and lauded the efforts of neurologist Dr. Pravina Shah, as well as Dr. B.S. Singhal in promoting the efforts of Samman members.
“Epilepsy is a hidden disorder” said Dr. Pravina Shah “in that people with epilepsy look just like any other”. She also said that people do not reveal they have the disorder due to the stigma associated with it. At the press conference held on 22nd November, Carol D’Souza stated that reasons for stigma have come from past beliefs that people with epilepsy were possessed when a seizure occurred. And though we are better informed now that it is a brain disorder, negative attitudes towards people with epilepsy still remain. In view of this it’s all the more courageous for 27 people with epilepsy to talk about their lives and have it published. 6 caregivers who have lost family members who had epilepsy have also given their accounts. The copyright if this book is with Samman Association / IEA.
At the launch people with epilepsy whose lives have been narrated in the book spoke of how they have overcome difficulties relating to education, employment and marriage. Caregivers spoke of the family support they had and the determination of their own children which helped them cope and helped their children become achievers.
Looking forward to you and your family members attending the Conquering Epilepsy book launch on 21st November. We plan to have the Book launch from 6.30 to 8.00 pm and dinner thereafter – all at Krishna Palace, Nana Chowk.
Support group meeting on 28th Sept had a large attendance when members of the World Human Development Center came to talk to us. Thereafter on 12th November we had a very poor attendance and hence did not do much. Wonder who will turn up today.
Through the efforts of our member Keyur Vaghela, a teacher from the World Human Development Center (WHDC)will give a seminar. The WHDC is a socio-economic organization whose goal is to improve the quality of life of huaman beings in all spheres i.e. physical, mental, spiritual, social and economical.
2.30 to 3.00 p.m. – introduction of WHDC and Mr. Latesh Shah the founder
3.00 to 4.00 p.m. what is power and where we get stuck.
4.00 to 4.30 p.m. – solution to your problems and invitation to SP2 (Super Power 2).
We Would like all our members to attend this seminar. Carol D’Souza
By continuing with the ABC of good health, I am learning so much. This time we did D, E & F. Most interesting was the knowledge gained about Fats & Essential Fatty Acids. New to me was the recent research given on the American Journal of Clinical Nutrition (AJCN) website which says that heart attacks are not caused due to cholesterol deposits but due to inflammation in the artery wall caused by excess intake of Omega 6. And that without inflammation cholesterol would move freely in the body as intended. I give the link to the most recent article I read (-Heart-surgeon-speaks-out-on-what-really-causes-heart-disease); it is written in very simple language and corresponds to what was given in AJCN. Happy Eating! Carol
Hi, A busy weekend for us. On the 24th we had our support group meeting. Was glad to meet Bharati after a long time. I did the ‘Cs of Good Health’ and Bevinda spoke about the ‘Steps to be taken to achieve good health’ after recently attending a meeting on the same. On the 25th we had an exhibition cum sale of products made by our members. Sale was very good and we created an awareness about our Association.
We were happy to have Dr. Pravina Shah attend our last support group meeting which was held in Shetty’s Restaurant where we discussed about plans for Samman Association. On the 25th we are having an exhibition cum sale at St. Joseph’s Convent. Do attend or help with the sale. If you have products you would like to sell let us know. See you, Carol
Muskan Foundation that works for people with disabilities organized a 3 day refresher course (5-7th June 2013) to update their teachers on changing trends, understanding of associated disorders, technology and education of children with disabilities.
Professionals from various fields were asked to conduct lectures / workshops. Samman member and Epilepsy Educator Kavita Shanbhag spoke to the teachers about Epilepsy and understanding children with convulsions and its implications to teachers and parents.
At the coming Saturday support group meeting we will be doing the Bs of Good Health i.e. Blood sugar, Blood pressure, Blood clots, bacteria and some B foods good for your health i.e. Bananas, beetroot & bran. Please be there at my home from 2 to 4 pm. Carol
The Waghela’s residence is situated in a nice location in Lalbaug area, just beside the Labaug Ganpati (Lalbaug cha Raja). The interior is nice and the balcony is decorated with plants. They are bird lovers.
Their shop is in the same building, ‘H.P.Tailors’.
Ten of us from ‘SAMMAN’ were present. Keyur, his father, mother, grandfather, grandmother and brother, Kunal, welcomed us.
We were served tasty dhoklas, white and yellow along with chatni, followed by icecream.
Kunal who is a yoga teacher, gave a demonstration of pranayam. The evening passed nicely, and we left with good memories.
We are closed for the summer from 27th to 31st May. Carol D’Souza
At the next support group meeting to be held on 25th May, 2013, I will talk about the ABC OF GOOD HEALTH. Beginning with the Alphabet A we will explain the following about your bodily needs:
‘A’ foods that are good for your health
‘A’ foods that are not good for your health
If we have time we will proceed to the alphabet ‘B’ and so on.
See you, Carol
P.S. Be ready to play a game as well which will test your knowledge!
The epilepsy awareness programme at the DAV school, was the first one conducted by UTTEJAN support group outside the IPH premises. This was on 3rd of may 2013.
Short articles for publicity were given in some newspapers.
DAV school is situated at Ghodbunder road Thane. The programme was arranged in their conference room.
Dr. Shubha Thatte, psychologist and trustee of IPH, was the main person responsible for the training. The UTTEJAN core members, Dr. Mrunalini Palshikar (Homeopath & Epilepsy couseller at IPH), Dr. Ashwini Marathe (Paediatrician), Alpa Chande ( Remedial counseller at IPH) & Reema Ramchandran (Teacher), were also present.
A number of volunteers from UTTEJAN supported the cause.
The audience included mostly teachers from DAV school, and a few Persons With Epilepsy and their parents.
The Purple Day booklets (giving information on Epilepsy) and UTTEJAN handbills (which provided information about UTTEJAN group and problems faced by Persons With Epilepsy) were distributed. The handbills were in English and Marathi.
The programme started with a powerpoint presentation, which included facts about epilepsy, such as it’s nature, types, do’s and dont’s, what happens when a person gets a seizure, etc. All the points in the presentation were elaborated by Dr. Shuba Thatte so that a layman may understand it.
The presentation was followed by an interactive session. Dr.Thatte & Dr. Ashwini Marathe cleared doubts of the audience.
Lastly, a film was shown, which was a skit presented by Balmohan Vidyamandir (Dadar) students. It showed how a student with epilepsy is treated by his co-students.
This programme was for school teachers, so that they may cope better with a student who has epilepsy.
On Saturday, 11th April Samman members will meet at Mukesh’s home at 4 pm. Mukesh stays at Wadala near the post office, Mumbai 400031. If you would like to join us, please let me know. Carol
We have decided that in the months of May, June and July we will have only one support group meeting i.e. on the 4th Saturday of the month as many go on holiday in May and many do not not attend in June and July due to the rains. See you on 25th May at my home. Carol
Dr. Pravina Shah will be coming today to Shetty Restaurant , Nana Chowk to review the blood test reports of all the members who had their blood tested on 9th April which Carol organized with Thyrocare. Carol
Hi, 25 persons took the blood test and the results were quite good; minor problems here and there for a few. The theme of the last meeting was expression of self through song, poetry etc. It started with members singing songs meaningful to them and turned into ‘antakshree’ for a little while when we missed our usual singer Sharvari Khot. We look forward to our rural epilepsy clinic this weekend in Pen. Best wishes to all, Carol
Research has shown that anti epileptic drug treatment can lower folate, vitamin B12 and calcium levels. Many of our members have never taken these tests and we think they are very important for seizure control and good health and should be assessed. Samman in association Thyrocare is organizing a health camp which entails blood testing for the 50 properties mentioned below. All that is required is that you come to their collection center at Bandra on Tue 9th April 2013 (tentative date) at 7 am on an empty stomach (10 hrs fasting). After the test you will be given tea and sandwiches. Cost is Rs.1400/- which is the special discounted rate being charged by Thyrocare. For those who cannot afford the same we will look for sponsors. This is a very good deal. Depending on your interest we will go ahead with the plan. So please inform me within the next 2-3 days. Thanks, Carol
Below are the 50 Blood tests covered in the package.
+ Vitamin B12 (Gastro – Intestinal)
+ Vitamin D
+ Diabetic screen (2)
HbA1c & Average Blood Glucose
+ Lipid Profile (7)
Total Cholesterol, HDL Cholesterol, Triglycerides, LDL Cholesterol, VLDL Cholesterol, TC / HDL Cholesterol ratio, LDL / HDL ratio
+ Liver Profile (10)
Bilirubin (Total), Bilirubin (Direct), Bilirubin (Indirect), SGOT (AST), SGPT (ALT), Alkaline Phosphatase, Gamma Glutamyl Transferase, Serum Albumin, Protein – Total, Serum Albumin / Globulin
+ Renal Profile (5)
Calcium, Uric Acid, Blood Urea Nitrogen, Serum Creatinine, BUN/Creatinine ratio
+ Iron Deficiency Profile (3)
Serum Iron, Total Iron Binding Capacity, % Transferrin Saturation
+ Thyroid Profile (3)
Total Triiodothyronine, Total Thyroxine, Thyroid Stimulating Hormone
+ CBC / Hemogram (17)
White Cell Count, Neutrophils, Lymphocytes, Monocytes, Eosinophils, Basophils, Red Cell Count, Hemoglobin, Hematocrit, Mean Corpuscular Volume, Mean Corpuscular Hemoglobin, MCH Concentration, Red Cell Distribution Width, Platelet Count, Platelet Distribution Width, Mean Platelet Volume, ESR
On 16th March we had an annual review of our activities at Shetty restaurant, Nana Chowk, and all members agreed that this blog was good in keeping track of the same.We had a good attendance – a total of 43 people. Members were informed about our activities this past year and new ones were planned. Will be sending the Minutes shortly. Carol
A lot has happened since Tony Greig passed away (my last post). We (our support group) had a tour of some Churches in Bandra (St Peter’s & St. Andrew’s) on the 5th of Jan. After which the entire group met at my place for tea, Mc burgers and other snacks. We then went down Band Stand to enjoy the breeze – actually the cold as it was quite chilly then – and took a photo in front of Shahrukh Khan’s bungalow.
We have been having regular support group meetings every 2nd and 4th Saturday and we also made a trip to Hyderabad from the 5th to the 10th of Feb for ECon as well as sightseeing. Enjoyed the trip to Ramojee Film City and the Sightseeing tour.
I look forward to meeting our members at our Review meeting which will be held on 16th March at 4 pm at Shetty restaurant, Nana Chowk. Our next Rural Epilepsy Clinic is on 21st April at Pen.
Best wishes, Carol
Tony Greig who was diagnosed with cancer in October passed away in Sydney, Australia. He suffered his first epileptic fit at the age of 14 during a tennis match. Tennis’ loss was cricket’s gain – he had a truly outstanding and successful career – as player and then commentator. Whilst he played the game now many knew he had epilepsy, but after retiring as a player he was a true epilepsy advocate and did a lot of work to create awareness and acceptance of people with epilepsy, especially in Australia. We will truly miss him. Carol
On the 22nd Samman members celebrated Christmas at Sarah’s place. We began the celebration with a quiz on the birth and life of Christ and the Catholics took the opportunity to educate the others about Jesus Christ. We then had a game of bingo / housie which is one game that is truly enjoyed by all. Jokim brought a delicious black forest cake; Sujatha Gopalan in celebration of her new grand daughter contributed malai pedas, and I brought some rose cookies which were enjoyed by all. Carol
Every year, in the month of November, SAMMAN members look forward to participating in a cultural and awareness program. This year too there was education and enjoyment. Kavita Shanbhag arranged two radio awareness programs, one in Hindi with Dr. Urvashi Shah (Trinayani FM Radio 7th Nov) on their program ‘Mud Mud Ke Na Dekh’ which specializes in creating disability awareness and one in Marathi on Asmita Vahini FM Rainbow radio channel with Dr. Sushil Tandel which was aired on 16th November. On 21st November we had an epilepsy awareness program for employees at Axis Bank at their corporate office in Worli. The program was initiated by epilepsy supporter Meera Rajendran who works with Axis Bank. Dr. Urvashi Shah, Ignatius Misquitta, Kavita Shanbhag and Carol D’Souza participated in the program.
On the 24th of November at Ravindra Natya Mandir mini auditorium we had a 3 hour ‘Epilepsy Appreciation Day’ program. After the prayer and traditional lighting of the lamp, Samman members commenced the program with a welcome dance.
Prior to the program we requested many neurologists to ask their epilepsy patients and their caregivers to apply for the Living Courageously with Epilepsy (LCWE) Award and the Most Supportive Caregiver (MSC) Award. Shenaz Haveliwala who in her story recounted her trials and tribulations with epilepsy won the LCWE Award which comprised a certificate and a cheque of Rs.5000/-. The most supportive caregiver award was shared by 5 persons: Rita Fernandes, Malini Alate, Manisha Thosar, Usha Badri & Malti Barade who each got a certificate and a cash prize of Rs.1000/-. We also had a fancy dress competition which was very enjoyable. The 1st prize was awarded to Christopher Fernandes for his dress and rendition of a coolie’s life; the second was awarded to (Dr.) Ashish Borgaonkar whose prescriptions for a healthy life regaled all and the 3rd prize was shared by Yasmin Rodrigues who came ‘All Wired’ and ‘Desi Cowboy’ Nitin Agarwal.
Carol D’Souza presented on ‘What’s Going Right In Our Lives’ which detailed how technology, government programs (health insurance, education, disability law), and new drugs, are helping in better diagnosis, treatment and rehabilitation of persons with epilepsy. She also took a positive look at Epilepsy & Marriage and Epilepsy & Employment and how ECell/ Samman is helping empower people with epilepsy.
We also took the opportunity, at this program, to remember Alpana Palan one of our very dear members who passed away very suddenly on the 15th of November 2012.
The second half of the program comprised a musical program put up by our member and long-time supporter Ashokbhai Parekh, his Guru Gagan Singh and teenage vocalist Priyanka and backup musicians. Their lively performance brought on stage very many members who danced with such gay abandon that it was a pure joy to watch.
The program will be etched in our memories for a long time to come.
Wish you all a very happy Diwali!
Dr. Urvashi Shah, Dr. Sujata Kanhere and Mr. Prakash Kadam made the meeting on Saturday all the more joyful with their presence and of course with the most delicious cake, pizzas, sweets etc. they provided.
We had a discussion on the upcoming fancy dress competition and awards which will be given on the 24th. Dr. Urvashi Shah then spoke about the Patients session which she will be conducting at the ECon in Hyderabad and what will be expected from the Samman group attending ECon.
We look forward to a very fruitful ECon 2013, best wishes, Carol
Posted October 26, 2012on:
The 58 year old author, physicist and poet has written more than 3000 poems and published books on emotion, schizophrenia and Albert Einstein.
Rodgers, who earned his bachelor’s in Mathematics at the University of Queensland, suffers fro dyslexia and epilepsy, but still managed to do well in school.
The poetic genius also hosts his own you Tube channel where he posts creative videos of his poems, music and information on his books.
In his biography he states :My life has consisted of agonies and ecstasies that I do not want to discuss. Although I did well at school, I was a dyslexic, epileptic misfit who suffered double vision and severe reading problems that meant my reading speed was 80 words per minute and,further,I could not read for more than 30 minutes per day until I was 20.
Nola as promised came and educated us on how EEGs are read. Most members felt that one meeting was not enough and requested her to come again. As it was Ashwini’s birthday on the 13th we had a special celebration with cake, samosas, batata wadas and pedas (the last item brought by new Grandmom Sujatha).
At the next meeting we shall discuss fancy dress ideas and if you’ll need help to put it together.
We are looking forward to receiving many entries for the ‘Living Courageously with Epilepsy’ award and the ‘Caregiver of the year’ award.
Posted October 9, 2012on:
As you’ll are aware the month of November is celebrated as National Epilepsy Awareness month. For all our people with epilepsy living in Mumbai we are having:
1. A fancy dress competition for kids with epilepsy on 24th Nov at Ravindra Natya Mandir, Mini Auditorium. There would be 3 age groups : Below 12, 12-18 and above 18 – 2 prizes in each category Rs.1000/- and Rs.500/-.
2. We are also having two other awards: The living courageously with epilepsy award (Prize: Rs.5000 + cert) and the caregiver of the year award. Send in your application to us giving your story in not more than 500 words. If desired, the person with epilepsy can write the story for the caregiver and vice-versa the caregiver may write the story for the person with epilepsy. Applications have to be sent to us latest by 10th November, 2012.
INTERESTED PERSONS PLEASE EMAIL ME AT: firstname.lastname@example.org
Hi, On the 4th Dr. Pravina Shah and I had gone to the National Association for the Blind to train health workers who had come from U.P. about epilepsy and its management. The health workers were interested learners and had a lot of questions.
Next support group meeting is on the 13th. Experienced and reputed EEG technician Nola Shah has volunteered to teach our members about EEGs. She has even decided to sponsor the treat after the talk! Thanks Nola.
The next ECon is going to be held in Hyderabad on the 9th and 10th of February 2013. This time ECell members want to travel by air, as most of them have never done so before. We look forward to a good conference and to enjoying ourselves in Hyderabad.
Still got 3 bibs left for the marathon – anyone wishing to join?
After doing the ‘8 ways to beat the blues’ we have decided that for the next few support group meetings we will teach singing and dancing (Line Dancing). Time to enjoy! Carol
We discussed the upcoming epilepsy day celebrations to be held on the 24th of November at Ravindra Natya Mandir mini auditorium. Some members were enthusiastic about participating in the fancy dress competition and also taking part in a dance. I also informed members about the “Living Courageously with Epilepsy” award (more will be uploaded on the competition and the awards later).
We also discussed what we could do at the national epilepsy conference to be held in Hyderabad on February 8-10 and asked members to inform us by Oct 5th if they wanted to attend and if they needed train bookings.
Members were also urged to take part in the Mumbai marathon. I informed them that if they needed letters for sponsorship these could be provided. Dr. Pravina Shah, Dr. Urvashi Shah, Dr. Sangeeta Ravat, Ashwini Mulay, Carol D’Souza and others will be taking part in the Dream Run.
Meeting ended with tea and cakes! Best wishes, Carol
Downloaded from The Lancet Neurology, Volume 11, Issue 10, Page 849, October 2012 Neuro Film Festival: challenge and inspiration
For its annual Neuro Film Festival competition, the American Academy of Neurology Foundation invites people affected by neurological disorders to submit short films telling their stories and explaining why research into the prevention, treatment, and cure of brain diseases needs to be supported. The 105 entries made this year, the third in the competition’s history, go far beyond this aim, taking the viewer on a journey that is sometimes challenging, sometimes moving, sometimes painful, but always inspirational.
The 2012 overall winner, chosen by an anonymous panel of expert judges, is The Astronaut’s Secret from director Zach Jankovic. The astronaut in question is Rich Clifford, who was diagnosed with Parkinson’s disease (by Jankovic’s father, who is a neurologist) while he was playing a very active part in NASA’s space programme. Clifford was determined that his diagnosis would not diminish his life and shortly after receiving the news returned to space with the support of his employers, who were some of the few people Clifford told about his diagnosis. Can there be any more eloquent illustration of the message that having a neurological disorder does not need to be life-limiting than a man with Parkinson’s disease flying a shuttle into space? On returning to Earth, Clifford realised that he would not be able to cope with long flights in the future, and so he took on a new mission: to educate audiences around the USA about brain disorders. Although Clifford now talks openly and eloquently about his struggles, he kept his diagnosis a secret from all but a small circle of family, friends, and colleagues for 17 years. This theme of fear of being judged by others is shared by many entrants, and shows that the aim of the American Academy of Neurology Foundation to improve public understanding of brain disorders is at least as important as the aim of supporting research.
Three films in particular remain with me. In one, Epilepsy: The Story of a Single Mother, a woman faces the camera alone. Talking with a voice barely above a whisper, frequently threatening to break with emotion, she describes how being diagnosed with epilepsy at the age of 43 has affected her life. She is clearly devastated by the effects of the disorder, confused by the doctors’ inability to explain why she has been afflicted, and desperate for a cure.
In another film, More Tourette Syndrome Research Needed, 17 year-old Mike Grabel, who has Tourette’s syndrome, talks to the camera while his head frequently jerks backwards and sideways. He describes the challenges of daily life with the disorder; trips to the mall invoke curious looks from other shoppers, and visits to the cinema, requiring the ability to be quiet and still, are impossible because the tics get worse the more Grabel tries to control them. Whereas many 17-year-old boys might be moody and monosyllabic, Grabel talks positively and fluently. Far from letting Tourette’s syndrome restrict his achievements, he has been accepted into the neuroscience programme at the University of Cincinnati, where he hopes to help other people with brain disorders by working towards a career in research. The viewer cannot help but be impressed by Grabel’s bravery in exposing both his tics and his hopes for a better future to the world.
But perhaps the most affecting film for me was Truth, the entry in which a young woman, Lisa Cerasoli, is forced to explain to her grandmother, Nora Jo, who has Alzheimer’s disease, that Nora’s husband Fritz died 6 years ago. Normally, the family go along with Nora’s belief that Fritz is still “around” though out of sight, but a carer told her the truth. Nora is clearly devastated and confused by the news, and she wipes away tears as Lisa explains that Fritz died in his sleep. Nora realises that although she now lives with her granddaughter, she has lost her partner, and so is in one sense, alone. And yet, even in the face of such a sad revelation, Nora retains a sense of positivity and a sense of humour: she will, she tells Lisa, “have a beer and put it out of my mind”.
Not all the films have a sad undertone: some entrants tell of having been on their death beds and making full recoveries; husbands and wives tell of their devotion to each other in times of sickness; and children tell of recovering from brain surgery. What all the entrants share, in the words of one, is the desire to have in life “dignity and a good time”. Can any of us ask for more?
Last Saturday we started the meeting with carrom (Tanvi & I beat Ashish & Shirish). Discussions began only at 3 pm when more people came. We continued with ‘8 ways to beat the blues’ and did the last five steps which were Accepting your situation, learning a relaxation technique, exercising, doing something be it a regular job or hobby or both and becoming a member of a group, figuring out and sharing our own little ways of coping and going to a psychologist when in need. It was very heartening to hear people who don’t normally talk share about their lives. Carol D’Souza
Psychologist Bina Sawant who was supposed to take this meeting, unfortunately could not make it. I started the meeting with yogic exercises after which I asked each one to share what they did in the last two weeks that made them happy. Salil then wanted to continue with the topic of the last meeting which was anger management and asked each person to describe a situation which made him/her angry and what was their reaction. Everyone participated. Next meeting will be held on September 8. Best wishes, Carol D’Souza
As I was not in town the meeting was organized and conducted by Salil, Christopher, & Ashish. This report has been prepared by Salil Kulkarni.
The meeting started with the prayer:
give me the serenity to accept things which I cannot change,
the courage to change things which I can,
and the wisdom to know the difference.
It was also translated in marathi.
This prayer was written on the blackboard and it was the first point of discussion.
To start with, the meaning of the prayer was discussed.
Everybody had something to say on this topic, as it is related to everyday life.
But there was some difference how they perceived the meaning.
The next topic was ‘Anger management’.
This topic did come in flow as the previous topic ended.
What is anger?
Why do you get angry?
What do you when you get angry?
How do you control anger?
such questions were discussed in this topic.
Everybody contributed his experiences or general behaviour regarding anger.
Later Friendship Bands were distributed, to celebrate the friendship day that passed on 5-8-2012.
Lastly the meeting ended with a comedy story that Aashish narrated to all of us leaving sweet memories.
We had tea before leaving.
We continued with Dr. Mittan’s “Eight Ways to Beat the Blues”. According to Dr. Mittan the second most important thing for people with epilepsy is to get the best treatment. He also says the following “Check up on the side effects of your medication. Sometimes they are the cause of your anxieties. But not often. We find most people who blame the pills are screwing things up themselves. Check on your medication but look at what is going on in your life.”
To help our members know what is going on in their lives, I asked them to write a letter to themselves as though they were that person in their household who is generally the most vocal about them. After doing so, they were asked to write a reply to that letter. Only if they wished to do so, those who wrote their letters in English, could then give it to Carol and those who wrote in Hindi / Marathi could hand their letters to Kavita for their views and personal counselling. At the end of the meeting we had cake, jalebis, dhokla and chips all brought by Rane, Christopher and Alpana to celebrate their birthdays.
Please come for the next support group meeting on the 11th, there may be a surprise visitor whom you would love to meet! Carol
As I was going through the old newsletters I found an article titled ‘8 Ways to Beat The Blues – especially for people with epilepsy’ written by Robert J Mittan PhD. The first point dealt with understand one’s epilepsy, which we did at this support group meeting. We will take the next point which is ‘what’s going on in my life that is contributing to my seizures’. See you at the next meeting on 28th. Carol
Hi, as there were new people attending this support group meeting, each of us introduced ourselves and our relationship with the organization. We then answered questions put forth by our guests, after which we had a short session on Changing Habits that don’t work for us. At the end of it all, we enjoyed the sumptuous bhel made by Nitin and his mother. Carol
The topic for todays meeting was: Employment. Kavita led the meeting. She laid emphasis on the importance of grooming and personality,
We asked our members what they thought was the most important quality required for the job they were doing.
They all gave a brief description on their work and job profiles.The essential quality According to most people was punctuality.
management, dedication, English and computer knowledge, understanding colleagues and team spirit.
Most discussed their lack of English knowledge as a barrier.
I then discussed on being the founder of my firm ‘SoboConnect’ (2006), despite uncontrolled seizures.
Mrs. Jayashree has noted the names of people who are serious about learning English, will help them out in E Cell as and when required. (So far 6 members have registered.)
Nitin thanked her on behalf of all of us by gifting her paper bag and epilepsy information.