Alan’s Story: Living with Epilepsy, and the Lessons We Wish We Had Known
Written by his carer Dalia
Alan’s story - living with epilepsy.
We adopted Alan at roughly one year old in 2020, he was found abandoned as a pup in Romania and brought over to the UK by Wendy's Woofers. He spent some weeks with guardian angel / foster carer Helen in Edinburgh, who trained him beautifully and after two visits we got the honour of adopting him. He was extremely scaredy-pants and took a long time for him to start trusting humans and doggies but after a year or so he was the most loving and sweet pup on earth. Unfortunately he started seizuring out of the blue when he was only around 4 years old, and after ruling out brain damage via MRI scan, he was diagnosed with idiopatic epilepsy and started on treatments. We did the best we could for him but it was a rollercoaster as his epilepsy was not really that responsive to treatment and we did not manage to find patterns or triggers.
The impact on everyday life
We changed jobs to be able to spend more time with him and bought a Tapo camera to have a look on him at all times, 24/7. We got very little sleep as every time he turned on his bed we would wake up thinking he was seizuring, and our social life was very reduced as we had to always be on medication watch at 6 & 7AM and 6 & 7PM. No more cinema trips or anywhere else we could not have the camera on, or anywhere without reception either if he wasn't with us. Our lives were turned completely upside down but we would do it all over again for him. The last few months the medication took a toll and he started having tummy issues, which prompted some difficult conversations but he would always come back fighting, making us think we had more time. After 3 long years and roughly 100 seizures, at around 7 years old, he went into status epilepticus and the vets could not do anything for him.
The most important takeaways from this nightmare we would like to share with other people are:
1. Insurance: Insure your companion from day one.
We are so glad we did. The last year of his illness we were up to £400 approx. per month on epilepsy meds alone. We were insured with PetPlan and they were fantastic. They covered everything, no questions asked. Aberdeen Vets for Pets managed most of our claims and we are also very grateful to them.
2. Keep a seizure diary.
Start a diary as soon as you can and keep it up to date. We had a notebook and a spreadsheet but it could also be an app. The diary becomes really important during vet visits.
3. Plan a kind farewell.
Book that dreaded appointment. Do not wait until they reach the end of the road naturally. Epilepsy does not come with a pretty ending, if you are going through this, book them a planned and kinder farewell. We wish we had.
He had an instagram account called @alanthewanderer. It is now paused and there will be no further posts, but I am not going to delete it so if anyone wants to get in touch, we will still be able to see and respond to private messages.
Best of luck.