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Testimonies on Epilepsy




Yasho Wakankar’s Story
I was an Epileptic patient for last 23 years…
Yasho Wakankar Yasho Wakankar
I am the happiest person in the world now! Since the last one & half years I haven’t had an epileptic attack! This was possible because of the Neuro–surgery I went through in July 2003. I used to have 2 to 10 attacks a month. This surgery was done in Trivandrum, at ‘Sree Chitra Tirunal Institute of Medical Sciences’. Now my family, my friends and I are living a very happy life. The anxiety and suffering is finally over.

1st July 1980: I was 7 years old. That day I had my first Epileptic attack. I was unconscious for the whole day, I was suffering from left Temporal Lobe Epilepsy and since that day my attacks started increasing. At first I used to have 2–3 attacks a month, but day by day the attacks increased, and up to last year number of attacks per month settled on 5 to 10. There were so many restrictions on me. Swimming, driving, running was not possible for me. Above all it hampered my quality of life a great deal and every moment was an anxious moment.

Both my parents have very positive thinking nature. They never treated me differently or as a child with some illness. They brought up my sister and me in the same manner, but due to this illness I could not participate in any of the sports and outdoor activities. So my parents encouraged me to cultivate hobbies, which I could do at home. They started me on Indian classical music’s class, drawing and many other hobbies. For me, classical music turned out to be my meditation, which is still continuing. At first, drawing was a hobby, but eventually it became my profession. I became Commercial Artist.

My mother, Dr. Anita Awachat, was my mentor from my childhood. She was a perfectionist. She taught me how to take medicines on time, how to keep notes about the attacks etc. Her opinion was, tablets are our friends, we have to accept them happily, and we have to say while taking medicines that I will be all right because of these medicines! She taught me how to accept my illness and how to live positively with epilepsy. Epilepsy is not only a physical disease, it also depends on your mental strength as well. It is said to be a psychosomatic as well. Meditation helped me counter the disease from time to time. When I met Parag, my husband, we started doing Vipassana, a scientific technique of meditation.

My mother was affected by cancer in 1989. But she was not at all nervous or depressed. She was working hard till her last day before she got admitted even if she was a cancer patient. That was when I realized, my disease is nothing compared to Cancer. I was told, Epilepsy is not an emergency disease like cancer, so why should I cry. I just have to accept it.

Parag, my husband also thinks very positively, just as my parents. After our marriage he started to know & learn about epilepsy. He started to read, surf the net on this subject. He used to give information about this subject to me. My attacks were increasing day by day. Then one day my Neurologist, Dr. Pradeep Diwate told us about the possible Epilepsy surgery.

We were in Belgium on account of my husband’s job. During that 1 ½ year stay, my attacks became very erratic and finally the most dreaded thing happened. I burnt my hand to third degree. I got an attack while I was cooking. That is when we decided to finally take a chance at Epilepsy surgery. We came to India, took an appointment at Sree Chitra Tirunal Institute. After Video EEG, initial check–ups and diagnosis of one–week stay at Sree Chitra, Dr Radhakrishnan told us that I was a good feasible candidate for surgery. This gave us a ray of hope. It was a very important and critical decision and we had nothing to lose.

I was operated on 2nd July (my surgery was 495th epileptic surgery at Sree Chitra!). Operation lasted for about 8 hours. After a long wait, Doctors told Parag that operation was successful, but the anxiety didn’t go right away, because my family and i lived with epilepsy for 23 years. All the doctors and nurses at Sree Chitra are very dedicated, and caring team. After operation I kept myself occupied with origami, and reading to ignore the pain. My recovery was very fast, and I was discharged after 7 days. The first review at Sree Chitra after 3 months showed no signs of epileptic activity in my brain. This was sheer joy to us, this was simply too hard to believe & to good to be true. I am very grateful to the team at Sree Chitra, which includes all Doctors, Nurses and the Staff.

Now I want to share my joy. I always wanted to reach out to people (this I possibly inherited from my parents), and hence decided that whatever the disease & a successful surgery has taught me and the manner in which I seem to have conquered it, should be passed on to as many epileptic patients as possible.

This has given rise to an idea of forming a support group for epileptic patients and their families. I started to meet epileptic patients and their families and many Neurologists in Pune. I told them about my operation and shared the idea of support group with them etc. I learnt about a very active epilepsy support group, “Samman” in Mumbai. I started to attend the support group in Mumbai. When I saw confidence in epileptic patients, I felt very glad! Yet there is a need to bring about more awareness in the society. An epileptic can lead a normal life, live happily while fighting with the disease.

Neurologists in Pune are very co–operative. Some of them have started to send their patients to me to counsel & convince them for the Epilepsy surgery. When people look at me as an example of successful operation, they happily get ready for the operation! My support group is supposedly starting next month. Who so ever is interested, or know any epileptic patient, please do call me on my cell phone: +91 9822008035 or pass on this message to them. I will be more than happy to be of help

It is just a beginning of new life…
Contact:
Sanvedana Foundation:
Cell Phone: +91 9822008035 or +91 9850887644
Muralidharan K.V.
Secretary, Indian Epilepsy Association, Bangalore Chapter.
Let me wish you on the very successful 5th anniversary of Sanvedana. It is a remarkable achievement and with dedicated people like you it will only see the better days. The website is a great idea as more and more people are computer savvy and can interact in the privacy of their homes. We did miss you in the Tirupathi meet as we wanted your in puts so that at an all India level we could ‘piggy ride’ on your experience and avoid the usual pit falls and the teething troubles. The matrimonial meet of your initiative came in for a high appreciation and lots of people were eager to learn from your efforts. Please keep up the great work.

My experience as the secretary of IEA Bangalore chapter has been a wonderful learning experience. I was initiated in to the IEA by none other than the great Dr. K S Mani, Father of the Indian Epileptology movement, and worked with him in close quarters for nearly a decade. His concern for the patient was so much that all his actions were dictated by his sole massage that “what is in it for the PWE’s”. His presence was so powerful that very few could resist his influence and without your conscious efforts you got carried away with his infectious enthusiasm.

Luckily after his demise we have Dr. H. V. Srinivas and Dr. Satishchandra original protégés of Dr K S Mani have taken up the mantle of steering the IEA Bangalore chapter with the same zeal, enthusiasm and principles with which their 'Guru' started the IEA Chapter.

I have been extremely lucky to have their constant guidance and advices on running the association as the Secretary for the past ten years.

We do a lot of activities on the dissemination of information like addressing the public at various forums, school and college children and their teachers, street plays taking the message to the deep interiors and counseling. We can do a lot more on the counseling front if the patients come forward or help them set up a help line provided they come forward. But what I found was that PWE's come ‘thus far and no further.’ AND WITHOUT THEIR ACTIVE PARICIPATION NOTHING MUCH CAN BE ACHIEVED. We have just touched the tip of the iceberg and a lot more need to be done to dispel the myth and the misconceptions associated with PWE’s.

With regards, and again wishing you all the best in your endeavor.
Pritam
Pritam Bhavsar
Pritam Bhavsar
My name is Pritam. I am not an epileptic patient but my sister Prajakta is… from last nine years. She started getting the epileptic attacks when she was 17. We all were shattered to know when she became an epileptic patient because we had never thought that someone in our family would ever suffer from Epilepsy. Also, there was no such medical history in our family in either side of our close ancestors. Initially doctors thought that the 4–5 years of the regular medication would suffice to cure her. Neurosurgery was another alternative but we preferred the option of 5 years medication over the painful and costly Neurosurgery. After starting with the medicines she started getting the “Absense Seizures”. Medication had reduced the intensity of the seizures a lot, so we thought she will surely get cured with the current treatment in 5–6 years. But god wanted to test our patience. There was no significant improvement, although she didn’t get the major attack in seven years, the frequency of the “Absence attacks” had increased a bit along with little hyperactivity. Just like most of the Epileptic patient, she too was living a quite pathetic life which was full of restrictions–no traveling alone, no driving and limited outdoor activities which caused her to loose all her friends and Epilepsy had started showing its psychosomatic and darker side.

After seven years we were quite worried as there were no sign of improvement, rather she was ‘rewarded’ with addition of one more tablet in her daily dosage which further lead us to frustration. At that time the seizures was not our only concern, we were also greatly concerned about her future and the social life ahead. We realized that Epilepsy is not only a physical disease; if it is not handled properly it greatly affects the mental health of the patient and creates the social stigma for the patient and their family members.

Finally, after eight years we consulted one reputed Neuro Physician in Pune. He suggested us to go for to Trivandrum to consult to Dr Radhakrishnan who practices at Sree Chitra Tirunal Institute for Medical Sciences & Technology (SCTIMST). I knew neurosurgery was recommended to Prajakta, so I had to take a call. I started gathering more information about SCTIMST and neurosurgery over the internet.

At aarogya.com, I stumbled upon “Yasho Wakankar’s Story”. She had also undergone the similar surgery at the same hospital and the best thing about her was that after her surgery she was living seizure free like and had also started an NGO called Sanvedana Foundation– a self help group and the consulting centre for epilepsy patients and their families. Yashoda’s story was very inspiring; she was the perfect person for us that time. We decided to consult Sanvedana. In the first visit itself my view towards the epilepsy has completely got changed. All of our doubts regarding the surgery and SCTIMST were cleared in the first meet itself. After seven years we were seeing some ray of hope for Prajakta. We had someone with whom we could easily share and discuss all our worries and problems. We came to know that the neurosurgery for epilepsy is not that risky if it’s done at some reputed hospital like SCTIMST. And considering the success rate of SCTIMST (we heard it’s almost 100%), we decided to go to Trivandrum. Sanvedana helped us get our appointment scheduled quickly at SCTIMST.

At SCTIMST, we met Dr Radhakrishnan & Dr Ashalata, they were very happy to know that we had come through Sanvedana. As expected, Prajakta was admitted for a week for Video EEG test. After spending seven long days for VEEG test, doctors diagnosed that Prajakta was a probable candidate for surgery; surgery had to be done on her brain (Left Anterior Temporal Lobe). Three months later Prajakta underwent successful neurosurgery. The surgery lasted for about 8 hours. After the surgery she was kept in ICU for a day and then she spent 7 days in the Epilepsy ward at SCTIMST under the observation of expert doctors and the nurses. Doctors told that she is now out of danger and is expected to have good outcome in the seizures frequency. First one month was extremely difficult and painful for Prajakta. But she know that “pain is the weakness leaving the body”, and that would pass too. Gradually, after two months all of her pains were gone and so were her seizures.

Today, its 1.5 years since Prajakta underwent the neurosurgery. There was only a single occurrence of the seizure since then, but as per the doctors it was expected and there was nothing to worry about. 3 months after the surgery Dr Radhakrishnan gave her a ‘clean chit’; he also gave her permission to drive the vehicle. I think that was the most beautiful moment in our life in last 9 years. I could see the loads of happiness on Prajakta’s face. Her confidence level was boosted like never before. For her further improvement, we brought her to Pune to let her start a new innings in her life. So, only 5 months after the surgery, Prajakta started staying with me in Pune. Initially, it was very difficult for all of us. She was staying alone at home. We took all possible safety measures when she stayed alone at home. Every another hour my mom and I used to call her to check if she is ok and safe. But on the other hand Prajakta was completely enjoying her new innings. Slowly, we started reducing the phone calls and gave her the independence in some sense.

Neurosurgery had completely changed Prajakta’s view to see and live the life. We saw good positive changes in Prajakta only 6 months after she got shifted to Pune. I decided to give her the chance to explore the world on her own. Cooking and household stuff was not new for her but I realized that like most of the epilepsy patients, she too was not so good in planning and decision making front. As per Yashoda’s suggestion, I decided to give her the full responsibility to manage our household things including budget and all. It was very difficult for her for first couple of months but then slowly she started learning it and has now become an expert ‘house girl’. I believe women are naturally good planner. She now manages everything in our home without a single help from anyone else. Of course, except the financial help.

After spending couple of months at home in Pune, Prajakta surprisingly showed interest to join a small computer course. I happily got her admitted for the same. She had started getting socialized. She already had made some new friends in our society. Happiness was everywhere. As if she was getting rewarded for her patience and hardship over the period of last nine years. Side by side, we were also visiting Sanvedana’s monthly meets regularly. Yashoda has now become a very good friend of mine; and Sanvedana… a new family.

Today, it’s almost one year since Prajakta got shifted to Pune. Something which had not happened with the medicines in last 8 years has happened in last single year. We are extremely happy for her progress. We are now planning to get her employed and truly make her independent in all the sense. And I know it’s not impossible if Sanvedana is there with us. I believe, the superb treatment at SCTIMST, consistent guidance and moral support from Sanvedana gave us chance to see these good days. It’s nothing less than a miracle for us!!!
My Experience with Epilepsy
By Alpana Palan
As a child I always considered myself 'sick or not normal'. Along with the usual childhood problems of coughs and colds I also feel unconsciousness and missed school whenever this happened. Medicine, which I had to take daily regularly, was a constant reminder that I was unwell.

Six months after birth, I had my first seizure and it was only around age of 12-13 that I began to really understand what epilepsy was all about. My school life passed in a blur. I lacked concentration and was often drowsy. Lacking confidence in may abilities and myself, I shied away from meeting people and talking to them. Fortunately, my parents noticed I had musical talent and had me train in classical singing. After doing my 10th grade, I did a beautician's course and for two years thereafter ran a beauty parlor from my home.

Life changed for me after my neurologist referred me to SAMMAN the epilepsy support group. When I first heard of this group my reaction was “I do want to join this group of people - they must be all mad”. Never one to socialize much I was obviously afraid. My mother had to coerce me to meet the group, which I eventually did. On meeting them, the one thought I had was “they are just like me”. I felt quite at home with them and eagerly awaited future meetings. Today I consider them ' My family'. Earlier I was never confident of traveling alone. Interacting with the group I grew in confidence and when we shifted residence from Colaba to New Bombay, I started traveling alone. After this I did volunteer work at the outpatient’s epilepsy clinic at K E M Hospital for 5 years.

One particular SAMMAN member Mahesh by name took a liking to me used to phone to me often. Love blossomed at our Epilepsy in house workshop in Deolali and I am happy to say we got married in 1999. Currently, I work as a caretaker at the E- cell, our epilepsy center.

My seizures are nor very well controlled with medication and I consider myself ' normal and healthy. I have gained confidence and satisfaction from my work. Working at the hospital O P D made me thankful, for my sufferings seemed small in comparison. Today whenever I narrate to people, especially those who have just discovered they or their children have epilepsy, that I have the same illness, it gives them much hope. The very least we can do to help each other is share our lives and thereby offer comfort. I have come out of the shadows and so can they.

Source: http://www.indianepilepsyassociation.org/Patients-Forum.html
A Heart Filled with Love
By Ashwini Mulay
It is often said that when you start getting negative thoughts, you should consciously bring to mind pleasant experiences. I just have to think of members of our support group Samoan and I am filled with joy.

My life, with active epilepsy, has been very painful. Since childhood (2.5 yrs) I have been having seizures. At one time, I used to get 15 - 16 complex partial seizures a day. When I was studying in the 8th standard I had a severe attack in school and was immediately admitted to a Nursing Home where I had a CT Scan, X - ray, EEG and MRI. All reports were normal. Then I had the tension of appearing for the 10th Board exam. With a lot of effort I cleared this exam and started a degree course in Commerce. I could not cope with the same as the medium was English and I come from a Marathi speaking background. I then learnt typing, fabric painting and flower making.

I got to know about the Support Group Saman from Dr. P U Shah. I joined it immediately and then started gaining confidence in myself. At first, mom used to accompany me to the E-cell our epilepsy center. After she saw others with epilepsy traveling on their own, I too was given permission. I always carry an identity card and that has helped whenever I was on my own and had a seizure. Samoan members are most supportive of my work. I get orders for cards and flowers from doctors as well as other members. Our motto 'God helps those who help themselves' is a constant reminder to keep putting in effort, to help myself.

Fortunately since July 2001 my seizures have stopped something my family would never have imagined, but hoped for, at the time I was getting 15 seizures a day. I do feel that epilepsy in my life has a purpose. After all, I would not have met wonderful people like Dr. Pravina Shah and Dr.Rash Shah, If it weren`t for epilepsy! I think of them and my heart fills with love!

Source: http://www.indianepilepsyassociation.org/Patients-Forum.html
Living with Epilepsy
By Kavita Shanbhag
I was caught unawares by Epilepsy when I was on the threshold of a very fulfilling experience of my life -motherhood. I had my first tonic-clonic attack while I was in labor during the birth of my first child in 1984. The stray attack was dismissed as a labour-associated convulsion and soon forgotten in the euphoria of rearing my first-born, a daughter. Four years passed by without even a trace of that episode. However, it resurfaced in 1988 when the stork visited me again. The second tonic-clonic attack came in the very initial months of my second pregnancy. Something was amis. But once again the attack was attributed to pregnancy and conveniently forgotten. Both my kids were growing up. Then, suddenly out of the blue again after 4 years i.e in 1992, I had my third tonic-clonic attack, at home when I was at once advised EEG and the diagnosis indicated that I was having an 'Abnormal E.E.G and Epilepsy'.

Now, the society expected me to be different though I did not feel any different. The prefix 'ab' had suddenly placed me in a separate category, medically. I had a new label. Nontheless, the sudden change imposed on my lifestyle had made me as vulnerable as any layperson. The routine of Anti-Epileptic Drugs (AEDs) demanded that I have a more disciplined life, which meant regular food, sleep and leisure. Initially, I used to be very drowsy, always wanting to sleep due to medication and I had to try very hard that it should not affect my work. I was quite curious to know more about my epilepsy but my near and dear ones (theye withnesses), in their over protectiveness, were too sensitive and reluctant to speak about it just others were insensitive about the whole issue. Initially, I too reacted negatively but soon realized that it was only ignorance that made the reaction of most of those around me so inappropriate. And it made me more determined to know more about epilepsy.

Once I made up my mind to learn more about my condition and accepted the attitudes of people, the road to recovery was quick.

I had so many unanswered questions and wanted to meet other persons with epilepsy to find the answers. As luck would have it, my physician (Dr. Chaitanya Gulvady), handed me a small book on epilepsy, authored by Dr. Pravina Shah. It provided basic and vital information about epilepsy. Towards the end it mentioned a self-help group for persons with epilepsy. Little did I know then, that Dr. Shah and the group would become an integral part of my life.

I went to see Dr. Shah and was completely bowled over by her dedicated towards not just the physical well being of persons with epilepsy but also their psychological well-being. She introduced me to the self-held group SAMMAN. Their activities for creating epilepsy awareness interested me so much, that slowly but surely SAMMAM grew on me.

Looking back, I feel epilepsy has been a blessing in disguise. It gave me a new focus and provided me with a new purpose. I have a keen interest in classical music, drama and writing poetry. Cultivating these talents gave me great pleasure but mostly benefited me alone. Today, while working with epilepsy support group, I make use of these talents to train our members. We also use drama for our epilepsy awareness and cultural programs. It is a great outlet for emotional expression and creates a positive effect on both the audience and the performers.

Living with epilepsy has been easier for me than most others, seizures being just once every 4 years, onset being after marriage when I was settled in my family life. My secure job at the Reserve Bank of India further boosted my confidence. But still, it was not always been smooth sailing. There was a time when epilepsy created havoc with my family life. My second child showed signs of learning difficulty, which doctors felt, could have been caused by my second seizure whilst in the early months of pregnancy. Fortunately, I did not harbor any guilt. At the same time, I knew that I had to do something for my child. Taking a year's leave, I enrolled for a Bachelor's degree in Special Education to help my child cope with his difficulty. He was my first student. Together we gought, tooth and nail, to overcome our respective problems and emerged with flying colors.

With all these first hand experience, I knew 'where the shoe pinches', what the parents lacked and desired. Thus, http://www.childraise.com was born. This is a website basically aimed at empowering parents with (Resources, Awareness, Information, Support & Education) for their special child. Currently, I am working on a Resource Guide "Journey To Empowerment" - A Roadmap for Special Children.

Today, being a facilitator of Samman, along with other team members and professionals, I stive hard to alleviate the traume experienced by epilepsy caregivers and to rehabilitate the person with epilepsy.

Source: http://www.indianepilepsyassociation.org/Patients-Forum.html
My Experience with Epilepsy
By Mukesh Shah
I was 13 years old, studying in standard eight when I had my first seizure. It happened after I hit my head and fell down. When I have a seizure I may fold my hands, spin my head and have a glazed look, which lasts for few seconds. After this everything is normal. With this disease it was very difficult to concentrate on my studies. Still I completed ny H S C (12 th grade). The doctors suggested not stressing. My brain too much and hence I had to leave my studies. To completely cure this disease we took guidance from many doctors. According to them this was a disease, which could not be cured but kept under control by taking medicines. We tried our luck with homeopathy and ayurvedic treatment but these did not work. I am now on allopathic treatment.

My daily medicines are very costly and have side effects. These I have to accept it. Medicines alone do not help me. I find it necessary to do Yoga, have a proper sleep and diet and a right attitude towards life. Doing all this I am able to keep the seizures under control. I find that with my current medication I can do my work with dedication. Compared to a normal man I am slow in doing work but without anyone`s interference I can complete my work properly.

At present I have joined the support group of SAMMAN, which runs at the E-cell in Mumbai under the guidance of Dr.Pravina Shah. She and her associates help us in finding our inner strengths and abilities. This is not an easy job but their help makes it a lot easier.

I take my medicines regularly and am happy to say that today I can go anywhere independently. Financially too I am independent and this makes me very glad.

Source: http://www.indianepilepsyassociation.org/Patients-Forum.html
Epilepsy and My Family
By Patre S. Rajashekar
1965 was a significant year in our lives, as we were blessed with a baby boy whom we named Rohith. Though the delivery was a difficult one we were assured that everything was normal. Five days a week I am away from home as I take care of our coffee estate.

When Rohith was 6 months. I went on my weekly trip to our estate. But the very next day I got a telegram to come back home quickly. Rohith had developed high fever and had a febrile convulsion, which was terrifying for my wife. Our doctor assured us that these thing do happen. We were to apply cold towels and give Gardenal to prevent convulsions whenever the child developed a fever.

All was well till the boy was 3 yrs. One afternoon after lunch, while he was playing, he suddenly stopped all movements and began to stare for a couple of minutes. This was his first petit mal attack .The doctor in my native town Birur suggested we take him to a pediatrician who in turn said not to worry, but to keep a watch on the child and report back of any developments. After a couple of months when Rohith had another petitmal attack we were asked to see Dr.Reddy who was the head of Nimhans in Bangalore. I did not waste time in meeting Dr.Reddy. It was he who told us our boy had 'Epilepsy'.

It was an unforgettable night for us. The word 'epilepsy' had given us a great shock. No one in both our families had it. Epilepsy was a taboo subject, we did not tell our closest relatives about it. We did not even tell Rohith`s school teachers. However, we saw to it that Rohith was given his medicine most regularly. This was the early sixties. I tried to get all the information I could on epilepsy. I joined the Indian Epilepsy Society, the ILAE and the Epilepsy Foundation of America. I got a lot of support from these organizations.

To make a long story short, over time Rohith`s condition stabilized and after seven years of no seizures, Dr.Reddy felt it was time to reduce the dosage gradually. This we were able to do successfully. I met Dr.Reddy again in 1993 to invite him for Rohith`s marriage. Today Rohith is happily married with two children of his own. When I tell Rohith about his earlier battles with epilepsy he says he does not remember anything at all!

Source: http://www.indianepilepsyassociation.org/Patients-Forum.html
Growing up with Samman
By Yasmin Rodrigues
Epilepsy began for me during an athletic meet when I was in standard eight. I felt to the ground, unconscious and took a long time to recover. The attacks that then took control over my life have been rough, tough and full of rejection and depression. I failed to know what I was exactly heading for. My brain had temporarily been damaged as a result of which I suffered from loss of memory.
What bothered me the most was the urination and the tongue bites that I had with almost every seizure. They were embarrassing to say the least.

I finally realized God created me in his own image and so I do have the right to face the world with a lot of confidence. The journey of million steps begins with a single step. When I heard of Samman, the epilepsy support group in Mumbai, I immediately wanted to be a part of this group. I have grown, in every way since joining Samman. It has changed my entire life. The seizures have now disappeared completely. My health has improved 100% and now I do have the strength to find a job for myself. In plain words with the miracle of love, my feet are now planted on solid ground!!

My special thanks to Dr. P.U. Shah and the other members for starting and nurturing Samman. God bless them in every way.

Source: http://www.indianepilepsyassociation.org/Patients-Forum.html