During the lockdown we have had more support group meetings than we have ever had before – all using zoom. Neuropsychologist Dr. Urvashi Shah, every week, has been doing sessions with us aptly titled ‘MAST LIFE’. We have had 5 of these with Dr. Shah on (1) Medication (2) Memory (3) Acceptance (4) Adjustment (5) Stress and the 6th session will be held tomorrow at 4.30 pm, on Treatments in Epilepsy. This will complete ‘MAST’ after which Dr. Shah will proceed with the acronym ‘LIFE’. Also, happy to let you know that these sessions have been attended not only by people from Mumbai but participants are all India. Uttejan (Thane support group members) have been regularly attending these. If you want to participate in these session please email me at [email protected] introduce yourself, your place of residence and indicate whether you are a caregiver or person with epilepsy. I will send you the invite. On request, I will send you audio recordings of previous sessions.
Last 2 Wednesdays we had sessions on Marriage. The first one was only for people with epilepsy (married and unmarried), was not recorded and was confidential. It started with everyone introducing him/herself and proceeded with the married people talking about how they met their spouse, whether there were any difficulties relating to acceptance of epilepsy, dating, looking after a family etc. after which there was a Q&A session. Participants enjoyed the session and the interaction.
The next session on Marriage was for caregivers of people with epilepsy. This too was not recorded and everyone was asked to maintain confidentiality. A couple of married people with epilepsy were invited to give their views. After introduction Carol D’Souza asked Neurologist and IBE/ ILAE Social Accomplishment Award winner Dr. Pravina Shah questions that dealt with what led to successful / unsuccessful marriages; whether persons with epilepsy could have children and when was marriage inadvisable, as well as whether people with epilepsy could marry each other. It was enlightening for the participants to hear that when epilepsy was fairly controlled and the person was independent i.e. s/he could take care of a family and/or earn a living, epilepsy did not come in the way of a successful marriage, whether it was ‘arranged’ with acceptance of epilepsy from both parties, or a love marriage. However, when there were behavioural issues involved, the marriage ran into intense difficulties and often ended in divorce.
In the months of April-May we had 2 sessions on ‘Emotional Freedom Therapy’ and ‘Forgiveness’ by Therapist Desiree Punwani and 3 sessions by Carol D’Souza on ‘The Voice In My Head’.
I have received huge positive feedback after each support group meeting and once again remind you to let me know if you want to participate at future zoom sessions.
The managing committee of Samman Association has also been busy with the form completion of the ‘Epilepsy & Work’ online survey. In a couple of days, I will put up the link and urge all who meet the requirements to fill in the form. It will help us better serve people with epilepsy and also help us to educate employers. Stay safe, keep well and keep learning and educating; warm regards,
Carol D’Souza, Consultant Psychologist, Treasurer & Founder Member of Samman Association
