Jess Hulbert

My reason why

As a kid, Dad was epileptic from 9 till he was 15. He “grew out” of his epilepsy, but then just before his 60th birthday, his seizures began again. The drs think it’s a different type now - Generalized Tonic clonic seizures. For most, these are quite distressing to witness and hear and often result in other physical injuries. 

The seizures he had as a child were similar but there are so many types and his triggers are really different as an adult. You would like to think lightning can’t strike twice, but it has for my amazing Dad.

His triggers are hard to pick as his seizures usually occur just after he wakes of a morning, but a bad night sleep tends to be a pattern in when he has a seizure. 

Most seizures last about 2-4minutes, however Dads can go from 7-12 minutes… and at times, have even been reoccurring for over 20 minutes and need an ambulance to give injections to stop him seizing. 

The after effects of this is usually excruciating migraines that pain meds hardly ease. He’s also has had fractured vertebrae in his neck, cuts, stitches. The seizures have also damaged a part in his brain - the amygdala is a small part of your brain that is major processing center for emotions (hence why Dad is often upset and/or angry). It also links your emotions to many other brain abilities, especially memories (which is a daily struggle), learning and your senses.

However the most difficult effect of epilepsy on Dad’s life has been the impact on his mental health. He is so depressed and anxious that he can’t find enjoyment in much at all. He hates leaving the house and gets super anxious in public settings, so often opts out. 

Medication has been hard for Dad, he hates the feeling of it, but has succumbed to the fact that he needs this to stay seizure free and hopefully get his drivers license back. It a bit of a catch 22, he needs the anti seizure medication however this has induced a tremor in his hand that reduces his ability to do lots of fine motor skills such as texting, drawing (he’s an amazing artist), playing guitar, tying his shoes, drinking from a full cup/mug etc. it also makes him anxious beyond belief which is exacerbated from interacting socially as he doesn’t want people to notice his tremor. 

Dad has always loved surfing, however since his epilepsy diagnosis it’s becoming harder physically for him. It’s also tough mentally to get him to get out in the water, and his confidence has plummeted so doesn’t feel like he can surf. Getting in the water is like medicine for Dad if we can get him to go out, most of the time he comes out of the surf in a more positive mindset. 

Over the past 4 years, his medication routine has been a revolving door of trial and error. Some medications for one condition (epilepsy) counteract another (anxiety/depression) or reduce effectiveness. These meds are also subjective from the health professional and it relies on all the necessary doctors communicating to agree on what is the best way forward. 

The amount of heath professionals he has seen in the last 4 years will probably be more than most will see in their lifetime. 

GPs, psychologists, psychiatrists, neurologists, epileptologist, emergency hospital staff, Ambos/paramedics, movement specialists, the list goes on. As it’s taken a while to feel like any progress is being made, I understand why he finds it hard to trust. 

With all of his limitations, work is now out of the question. Applying for Centrelink also took a knock with Dad’s confidence, and its such a difficult process that took about three years to be successful. Why is this process to hard to navigate for the most vulnerable when there are several doctors/specialists saying he is unable to work indefinitely???

So nowadays, life is slower for Dad.  Mornings are tough and shaky physically and emotionally, and he dreads the feeling when his medications kick in each day. From lunchtime onwards is hit and miss so we just take each day as it comes. Dad’s grandkids are a great distraction from it all and make him smile. The kids adore him and don’t see his disability, just all of his amazing caring qualities. 

One thing that hasn’t wavered throughout, has been the love Dad has for Mum. Mum is a true Angel for my Dad and is the most selfless person we all know. She is his carer, his lover, his best friend, his safe person, his spokesperson when dad can’t find the right words, his driver, his nurse, and overall his person who devotes so much to him. Although her annoying whistle drives him a little more crazy, he wouldn’t have her any other way. We’re all so lucky. 

So if you’re still reading this monster piece, I hope you now have an insight into what has been an endless battle for my Dad, and family. Epilepsy is a bloody hard card to be dealt for all involved but has opened my eyes so much and has taught me to show more kindness, compassion, and patience. 

Love you Dad

Xx

The walks have begun