2020 was indeed a memorable year in more ways than one as we shared a global phenomenon called the COVID-19 pandemic. New Zealand has faired better than most other countries but there is always the need to be vigilant against any community transmission. International research confirmed that people living with epilepsy were at a slight increased risk for complications from the Covid infection and that the pandemic has challenged the mental health risk of us all. These are indeed challenging times.
Maria Lowe, our epilepsy advisor didn’t waste much time over our lockdown as she wrote a small book called, “An introductory guide to understanding and managing epilepsy’. The book is easy to read and a quick guide to understanding a complex condition. We are delighted to have Claudia Gadotti (internationally renowned Italian illustrator now living in Auckland) who has drawn many of the wonderful illustrations for the book and the two first aid posters. Claudia had previously illustrated our children’s book, “Ariana and Jack” which is still available here. We enlisted the editing skills of our chairman, David Lowe, and the book is in the careful hands of graphic designer and artist, Tim Ingle, who has also contributed with another set of illustrations. We are working hard to have the book printed and in circulation early next year which incidentally marks our 10th anniversary.
We would like to thank Harcourts for their kind donation of $6,480 for the production of our book.
Once lockdown was over in May our normal activities resumed and we were able to socialise again. It was certainly great to see you. Please feel welcome to attend any of our social events.
We attended three expos this year: the Wellbeing Expo just before lockdown and the two women’s expos (in Tauranga and Hamilton) in October and November. It was quite a strange feeling venturing out in a large group straight after lockdown but we survived and, what is more, we enjoyed ourselves.
In October we celebrated our ‘Hero Award” at the Hamilton Gardens. We were delighted to award Neil Fynn our ‘epilepsy hero’ for the work that he does for people living with disabilities including epilepsy.
In November a few keen and energetic EWCT walkers/joggers entered the Lugton “Round-thebridges’. You are always welcome to join them!
Once again, we made a huge effort to mark the international epilepsy awareness month in November. We are part of the global epilepsy community spreading the news and views around the world. This year, Maria interviewed 23 people who live directly, or indirectly, with epilepsy, in what is now known as the ‘phone chat project’. These phone chat stories were put up on our Facebook page daily and you can also read them here.
The phone chat stories are remarkably honest and diverse accounts of what it is like living with epilepsy. We acknowledge the difficulties that many have in living with this really complex condition. Epilepsy is more than a seizure and these ‘phone chats’ express feelings of frustration, sometimes hurt, but also resilience. As the president of the ILAE (International League Against Epilepsy) recently said, “people with epilepsy have reserves of strength and resilience, though some of them may not realize it.” In fact, he then goes on to say,” people with epilepsy are experts at being resilient, and in this time of global crisis, we must not let them down.”
Summer is here
We have battled our way through lockdown and another busy year and now it is time to enjoy summer and have a holiday. You can now take the time to relax, read a book, go for a walk, play with the dog, help out with the kids or visit friends. Maybe you would enjoy a bit of exercise but remember to slip, slop, slap if you go out in the sun, stay cool and don’t tire, take time to rest. Maybe over this holiday you would like to sing a song, plan a trip, have a dose of nature.
Assess risks and take care if you are around the barbeque, near the sea, the river or the swimming pool. Remember to use ID when going out. Stay safe! Whatever you choose to do have fun, laugh and smile. Enjoy life!Our last reminder to you is to remember to take your meds, eat well, sleep well, nap if you get tired. Find less stress in your life and reach out if you need help.
We value our funders and sponsors who continue to support us financially. Thank you. We are a not-for-profit organisation and we do not receive government funding, and yet we deliver an epilepsy service to the highest standard.
We would also like to thank our patron, Hon Tim Macindoe for his continued support of EWCT.
See you in 2021!
The EWCT trust board, Margaret Paine (secretary/administrator) and Maria Lowe (epilepsy advisor), wish you all a relaxing, safe and happy holiday and we look forward to seeing you in the New Year.