Samman Association

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

This slideshow requires JavaScript.

Advertisements

Do you know?
The classic ketogenic diet contains a 4:1 ratio of fat to combined protein and carbohydrate. This diet excludes high-carbohydrate foods such as starchy fruits and vegetables, bread, pasta, grains and sugar while increasing the consumption of foods high in fats such as nuts, cream, and butter. The ketogenic diet reduces seizure frequency by more than 50% in half of the patients who try it and by more than 90% in a third of patients. Children with refractory epilepsy are more likely to benefit from the ketogenic diet than from trying another anticonvulsant drug. It is not a benign, holistic or natural treatment for EPILEPSY!!!!

As, with any serious medication, therapy, there maybe complications. Common but easily treatable side effects include constipation, low- grade acidosis and hypoglycemia.

Possible therapeutic uses for the ketogenic diet have being studied for various neurological disorders in addition to epilepsy: Alzheimer’s disease (AD), amyotrophic lateral sclerosis (ALS), autism, brain cancer, headache, neurotrauma, pain, Parkinson’s disease (PD) and sleep disorders.

 

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

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

 

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

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

 

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

(Chanda Gunn- American Ice Hockey Player)

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

JOIN SAMMAN!

This slideshow requires JavaScript.

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

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

This slideshow requires JavaScript.

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

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

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

Carol D’Souza

This slideshow requires JavaScript.

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

Carol D’Souza

Categories

Advertisements
%d bloggers like this: