Do you remember Ali? Ali has shared her story for her new local community in NSW, while her story is not all about epilepsy it is definitely worth a read. She has inspired us on many levels. Her story talks about her struggles and also what she has accomplished during her epilepsy journey. Thank you for letting us be part of your story.From Woe to Well-being By Ali Borrett
This is the first time I have ever put my story into words. Writing it down to share publicly is a big step for me. 8 years ago, if you had told me that I would be working at a gym, taking classes, loving exercise and studying to be a personal trainer I would have laughed at you. I have been battling with weight and self-confidence the majority of my life. In 2014, while living in Canberra, I was struggling with mental health and an epilepsy diagnosis I was never prepared for. After being hospitalised my family and I struggled with my mental health, medication, weight gain, uncontrolled seizures and unemployment. My partner and I were advised that due to my medications, getting pregnant wasn’t an option - perhaps the worst news of all. I’d descended into, and took up residence at Rock Bottom.
In December of 2014 my younger sister sat me down on Cuttagee Beach to deliver me an ultimatum. She told me that despite loving me, she couldn’t and wouldn’t watch me continue travelling down this road. This was the beginning of my change and what I needed to hear in order to get up and start a new chapter in my life, one that has been challenging and so unbelievably rewarding.
At this stage I weighed in at 128kgs, size 22-24 with a BMI of 48.2. With what little self-confidence I had, I applied for every job possible and ended up getting a job in retail that I loved. My job not only boosted my confidence but got me on my feet for 8 hours a day, 5 days a week. I worked hard on both my lifestyle and fitness for 18 months, became seizure free and lost 28kgs. I was exercising for the first time and my enjoyment in life had begun to increase.
Another year passed and my GP and neurologist advised me that my weight loss, seizure control and improved mental health meant that under strict medical supervision, I could come off most of my medications and try for a family. The aim now was to get pregnant and start the family I had always dreamt of. I maintained my physical exercise, continued to work, and soon found out I was pregnant.
Life switched gears again. During my pregnancy I was diagnosed with Gestational Diabetes. This prompted me to join Canberra Fitness Centre (CFC) who offered a gym class called ‘Preggie Bellies’. Awesome for many reasons but mainly it kept me moving during the later stages of my pregnancy when I became insulin-dependent.
Riley was born in March 2017 and I continued with CFC joining their ‘Mums and Bubs’ sessions. These classes offered a safe space to work out and be trained by incredible trainers who specialised in this field. I had the added bonus of finding like minded mums who helped me get through the challenging ‘first-time-mum’ feels. Throughout this time my weight had continued to decrease, my strength had increased, I was still seizure free and my mental health was stable. So, we decided to try for baby #2.
In July 2018 I found out I was pregnant again. I continued doing ‘Mums and Bubs’ and ‘Preggie Bellies’ classes. When the time came for my gestational diabetes test, I was expecting the worst. Much to my GP’s and my surprise, not only was the test negative but my blood sugars were within the ‘normal’ range. This result was attributed to my weight loss and fitness improvement between my pregnancies.
I gave birth to Paddy in March 2019 and this was very quickly followed by some major life events that would lead to our little family relocating to Bermagui. I was keen to keep my fitness journey going once we moved down here, so, on the recommendation of a friend, I joined Bermagui Fitness Factory. This was not only a great decision for my health and fitness but it got me meeting new people in the community that I was quickly calling home. Exercise had become a love affair. I felt great both inside and out and was doing 3 – 4 classes a week. I even attended my first Blue Pool Bootcamp and have never looked back. Like many others, the fires, floods and COVID-19 stopped a lot of what I had been doing but I was determined to stay fit during lockdown so kept on with Bermagui Fitness Factory. I also decided that I wanted to be able to provide support to others, just like my trainers had provided to me over the years. This is when I made the decision to start studying fitness.
Which brings me to today. It’s been 12 months since I completed ‘Carly’s Killer Challenge’ and my Certificate 3 in Fitness. I’ve now started my Certificate 4 in Fitness, have an incredible family and beautiful friends. I live in the best community and I’m still seizure free. No doubt, there are hard days to be had but for the majority of it, I can say I’m genuinely happy.
I no longer worry too much about the scales but focus more on how I feel. Exercise and Bermagui Fitness Factory have become a massive part of my life and a huge, positive boost to my mental health. My family can attest to the fact that I’m a much nicer human on the days I train. My weight is currently 74kgs, I have a BMI of 27 and am a very happy size 12. This means I’m looking down the barrel of a 54kg weight loss (which if you include the loss of my baby weight is close to 76kgs). More importantly, I feel strong and happy. Life has and will present all kinds of challenges but never would I have dreamed to be in the healthy, happy place I am now. My hard work, dedication and support from my incredible family, friends and community has really paid off. ... See MoreSee Less
Today we remember the beautiful and talented woman with a heart of gold, Lizzy. Lizzy spent many many years, too many to count volunteering for Epilepsy ACT. We appreciate you and everything you did for us. Rest in Peace. ... See MoreSee Less
⚠️ Disney has advised that the film #Cruella in cinemas now and streaming on Disney+ with Premier Access has some flashing lights sequences or patterns that may affect photosensitive viewers. If you experience photosensitivity, please take care when viewing this film. For more information about photosensitive epilepsy, please call Epilepsy ACT on 1300 852 853 ... See MoreSee Less
Some good news. Check this out 😁📣📣 Life-changing progress has been made on the development of a medical device which can help predict epileptic seizures, reports @angsnowden for The Australian.
St Vincent's Hospital Melbourne Director of Neurology Mark Cook designed the “Epi-Minder” – an implant which is inserted on the inside of the scalp to constantly monitor brain activity and detect patterns to predict seizures – in 2003. The prototype has not been a viable medical solution due to the large amounts of data produced, which overwhelmed computer systems at the time.
⏩ Fast-forward to 2021.
“We have a solution, which requires very sophisticated analysis using huge amounts of data, which have got to be accessed live. Now we have a way to do that,” says Professor Cook.
After he teamed up with Cochlear to create the device, he most recently partnered with Seer Medical in April of this year – a technology start-up specialising in data analysis for epilepsy – to distil data into patterns.
“So it goes from this device (the implant and external piece) through Bluetooth to the phone. From the phone it goes to the cloud. The patient has a mobile with them all the time or nearby, and it transmits constantly,” he says.
“When we collect all the electrical events we can see a pattern. Once you see the patterns – and they are individual, everyone’s got their own pattern – you can actually create a forecasting algorithm for the patients.”
Patients with the implant will have access to an app with a calendar that will report days when they are likely to have a seizure.
From May 1, Australians living with Dravet Syndrome will have access to a medicinal cannabis drug, listed on the Pharmaceutical Benefits Scheme (PBS). Dravet syndrome is a rare, genetic epileptic encephalopathy that gives rise to seizures that don’t respond well to the standard medications. The disorder begins in the first year of life in otherwise healthy children. It is estimated that around 116 patients each year will benefit from the listing of Epidyolex®, who might otherwise pay more than $24,000 per year for the treatment. Instead, they will now pay only $41.30 per script or $6.60 if they have a concession card. For more information speak to your neurologist, GP or send us a direct message. ... See MoreSee Less