29/08/2022
💜 Nurse Brad’s story 💜
When I was 5 years old I got a bad case of measles and had a prolonged temperature. That Xmas family holiday I had my first seizure. Mum and Dad thought I had been bitten by a snake. However when I had another seizure the next day the holiday ceased immediately. We returned to and I was referred to a who diagnosed me with .
From 5-10 I lived a pretty normal life. I attended school and played sport. I'm grateful my parents allowed me to continue a full life and didn’t over protect me. Of course I had embarrassing moments at school and in public places. Ages 10-15 were very difficult years. I entered into puberty and it was difficult to get the right mixture of anti-convulsants and anti-depressant/mood-stabilising medications. When I was 13 I had a day where I had numerous tonic clonic seizures and partial seizures at home. Mum found me in the middle of the night in status epelepticus. This required Dad to provide life support and I spent the next few days in a coma in hospital.
Medication never controlled my epilepsy. It reduced the amount of seizures I had. During my teenage years I was on 1000mg Epilm TDS and Tegretol 400mg BD and a mood stabiliser in the evenings. I was too unwell to finish year 10 at school and I did transitional education in years 11 and 12. This was learning how to work with your hands. I was fortunate for a group of hotels and delis owners who gave me part time jobs until I was 21. They would pick me up off the floor if I had a seizure and let me sleep it off. I spent alot of time with my grandparents. One holiday I was fishing with my grandad off the rocks out of town. I felt an aura coming on and dropped the fishing knife over the edge and fell on jagged rocks and required seven stitches in my head. I had some really bad falls over the years while having tonic clonic seizures.
In my early twenties I did a mature age TEE - Grandad was my spell checker. I had to be given a separate room for exams as having partial and tonic clonic seizures was very disruptive to the other students. At the completion of my TEE I was overwhelmed by the lack of opportunities moving forward in life. This resulted in depression. My life was looking very bleak at this point.
My treating neurologist Dr Gubbay then referred me to an amazing man, Dr John Dunne at Royal Perth Hospital. Dr Dunne had just returned from America and had advanced skills reading MRIs. I had a MRI when 20 years old and the result was that I was inoperable. Dr Dunne looked at the MRI and could clearly see the scar on my left temporal lobe and organised for a week of tests with the possibility of neurosurgery. The two weeks of video monitoring was one of the hardest weeks of my life. The first week the electrodes were on my scalp. The second week they were inserted internally to better capture activity. I was taken off my medications and pushed to exhaustion, so seizures could be captured. This put me and my mother through hell. However the combination of video monitoring and nuclear medicine captured enough information to proceed.
A few months later I went to Sir Charles Gairdner Hospital where an amazing neurosurgeon Dr Micheal Lee performed a left-sided temporal lobectomy to remove the scar on the left side of my temporal lobe. I was 25 and frightened, but the chance of a full life wasn't going to get in the road. I found the support of family and friends and prayer very comforting during this period. Post-operatively I had a couple of hairy moments which are not uncommon. However I was discharged after a week in hospital. I remained on the Epilm and Tegeretol when I left hospital.
Prior to the operation Mum and I purchased an ice cream drink shop to give me a job and she could keep an eye on me while I recovered. I never had another seizure after the operation. It took a couple of years for me to come off the medications and get a driver’s license. I thought I would run a small business for the rest of my life. Changing economic conditions meant I had to get a second job when I was 29. We left the ice cream shop and I got a job at Shenton Park Hospital as an orderly and I worked there for the next 5 years.
I went to University at 32 and graduated as a Registered Nurse at 35. I learnt my nursing at Royal Perth then went to Sir Charles Gairdener. It was so eerie when I worked on the neurosurgery ward where I had my brain surgery. I felt so grateful for the second chance at life. By the time I was 40 I figured I wanted to be a nurse educator. I worked the next 10 years as an educator supporting graduate nurses. Towards the end of this time I answered an ad to be a community nurse educator. Much to my delight it was for Epilepsy WA. I have really enjoyed speaking to community groups for the last few years on Understanding Epilepsy and Administration of Emergency Medication where I can teach the learners and share a part of my journey into the session and when speaking to families and carers.
I would have been so grateful if these services were available when I was at school. It would have greatly assisted in managing some very difficult times. I'm very grateful that my parents allowed me to experience as much of life as possible while I suffered uncontrolled epilepsy. The social difficulties and the pain from falls post-seizure is outweighed by the joy of life's experiences. A combination of mother’s love, God’s grace and hard work got me through.
💜 Thank you so much Brad for sharing your incredible story and for being our nurse educator for schools and childhood learning centres for over 3 years now! 💜
