Last month we hoped for snow, this month we hope for national wellbeing.
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Edition 32, 2020
Hi Friend,
Welcome to this new (financial) year Brainwaves edition.
I am pleased to advise that Epilepsy Tasmania is now once again fully operational in both offices - Hobart and Launceston.
Many of us found working from home both positive and at times challenging, but it is nice to now be able to see each other and chat over a cuppa again.
We have just reviewed our new Covid-19 Health and Wellbeing telephone service and seen it to be a valuable new addition to the support we provide. It is not part of our current funding agreement with the state government but we will be seeking funds to continue this service. We have also updated our website with some additional information on Covid-19 in relation to epilepsy which you might like to read: https://epilepsytasmania.org.au/covid-19-corona-virus-and-epilepsy/
We have just created a Q & A video where our social worker Shirley discusses the training packages Epilepsy Tasmania offers. And over the coming weeks our nurse Emma will be discussing the services she provides.
Epilepsy Tasmania is still looking for volunteers to fill a number of positions including social media, fundraising and administration support so please spread the word.
As always please be in touch with any feedback or comments.
Take care,
Wendy Groot, CEO Epilepsy Tasmania.
Heartbreaking SUDEP
Yesterday morning Epilepsy Tasmania's CEO Wendy Groot and Hobart mum Penny Flanagan were interviewed on ABC Radio Hobart by Leon Compton.
We encourage you to listen to this emotional discussion of Penny talking about her son Jack (both pictured in the photo) who very sadly passed away from SUDEP (sudden unexpected death from epilepsy).
SUDEP can occur in people with epilepsy who are otherwise well.
Epilepsy Tasmania CEO, Wendy, has previously said “No one knows what causes SUDEP and we can’t predict who will be affected. It’s often easier for us to avoid talking about death, to shy away from raw and potentially heartbreaking conversations. So we are especially grateful to Penny for her bravery and willingness to share during this very difficult time."
“It is confronting to know that most people with epilepsy are unaware their risk of premature death is three times that of the general population,” said Wendy. “Or that they are less likely to live to the general life expectancy of 80 to 84 years of age; the mean life expectancy for someone with epilepsy is just 52 years old.”
Epilepsy – A Focus on Tasmania, (released early this year and available to read on our website) highlighted that across Australia approximately 300 people die from epilepsy each year. The cause of these deaths can be due to having a seizure while driving or swimming, a brain injury, stroke or accidents – but half are from causes unknown (SUDEP).
Epilepsy Tasmania provides resources and support for Tasmanians living with or affected by epilepsy. Our nurse, social worker and support staff are all available to continue this conversation in person, over the phone or on our Facebook page and private Facebook groups - so please reach out if you need us.
Only with the courage to have these difficult conversations can we begin to prioritise the importance of research and of finding a cure for epilepsy.
Thank You to our Friends at the Friends School!
Three students from Hobart's Friends School recently volunteered to help Epilepsy Tasmania undertake its annual stocktake.
Thank you to Khushi, Kayla and Olivia (pictured from left to right in photo) for all their hard work and achievements. Next stop could be helping their school become Epilepsy Smart!
For more information:
Volunteer: https://epilepsytasmania.org.au/volunteer/
Epilepsy Smart Schools: https://epilepsytasmania.org.au/epilepsy-action-plan-schools/
FingerKnitting Challenge IS BACK!!!
Raising awareness of epilepsy in Tasmanian schools...
Your challenge – should you choose to accept it:
Step 1. Drape a room, piece of furniture or anything at all in purple finger knitting.
Step 2. Share your efforts on social media using the hashtag #FingerKnittingChallenge.
Epilepsy Tasmania will monitor public social media pages and re-share efforts to further increase awareness.
PLUS there are some great prizes to win!
Competition closes Friday 11th September 2020.
For more info and a how-to finger knit video: https://epilepsytasmania.org.au/fingerknitting-register-event/
Referral and Support Options
For Healthcare Professionals
Epilepsy Tasmania supports all healthcare professionals with the provision of best-practice healthcare (physical and mental).
Our website menu has a tab especially for healthcare providers with links to printable and online forms and information for providers and patients.
For Individuals and Family Members
Epilepsy Tasmania can provide information and support to Tasmanians who have been diagnosed with epilepsy and their family members, schools and workplaces.
We can help you :
- Write your Epilepsy Management Plan.
- Communicate better with medical specialists.
- Create an Epilepsy Friendly Workplace.
- Make your school Epilepsy Smart.
- With seizure first aid training and medication administration.
- Establish valuable support systems.
- Live well with epilepsy.
Please visit our website for more information: https://epilepsytasmania.org.au/
Q & A with Epilepsy Tasmania's Social Worker
Shirley Poetschka is an accredited Social Worker and Education and Training Coordinator at Epilepsy Tasmania. In this video, Shirl explains the range of training and support options available to Tasmanians with epilepsy and those around them.
Watch our video here: https://www.youtube.com/watch?v=ak5llhNaik8
Cuppa Club
With the success of our weekly phone catch-ups and health restrictions now easing, Epilepsy Tasmania is looking for ideas to continue connecting Tasmanians living with or affected by epilepsy.
Please complete our quick survey to guide how we do this: https://www.surveymonkey.com/r/7YJ9Q3H
“Clouds come floating into my life, no longer to carry rain or usher storm, but to add colour to my sunset sky."
Rabindranath Tagore
Epilepsy Tasmania is a not-for-profit community organisation improving the quality of life of Tasmanians with epilepsy, and those around them, through education, coordination and support.
