CJ’s partner Danny was diagnosed with epilepsy in December last year. He shares how Danny felt when he was diagnosed and why he is running the Great Scottish Run to raise money for Epilepsy Scotland.
“My partner took his first seizure in December 2023 at the age of 40, between Christmas and New Year. It was a scary time for both of us, as nothing like this had ever happened and he had no previous health issues.
This carried on until present but carried on with no answers until May 2024 where he was diagnosed.
For my partner, he lived in denial until recently he didn’t really believe the seriousness of what was happening or could happen.
His independence was took from him, couldn’t work at the time as the seizures came on thick and fast, wasn’t allowed to drive etc, and physically he was so exhausted for days after double seizures at times.
He has full Tonic-Clonic (grandmal) seizures. Most people don’t know that, not all forms of epilepsy make the body seize but his type does very violently at times and can be scary to watch.
He currently is still working with the neurology consultant to get the right level of medication for him which can be frustrating for him.
Only recently he took five seizures in one day which after the second landed him in hospital and he was getting took to ICU, as this was the best thing to give his body the recovery time needed but he pulled through after a week in a ward.
For me, his partner, it is very mentally/ emotionally draining to watch and feel helpless at times but wouldn’t be anywhere else other than there to help in any way I can.
Challenges faced
He has his driving licence froze for now, which is a big thing for him as he’s had a car since he was 17, so getting used to commuting to work and general stuff has been a life change.
Trying to learn if there is any triggers or warning signs he and I can look out for, but still both non the wiser, for a while we thought nocturnal possibly.
He suffers from major brain fog now, and worse after a seizure.
The person diagnosed is going through so many different mental and physical changes within themselves, and if If I am honest it’s hard for the partner too, to watch on and worry.
It’s all the things that come before or after the seizures at times, night sweats where you need to change the bed every night at 3am, the days of confusion and brain fog for my partner, muscle soreness and major fatigued to mention a few.
Fundraising for Epilepsy Scotland
To raise funds and make more people aware of the seriousness of the condition.
If I’m totally honest I haven’t received much support. As his partner, I’ve done a lot of self-research and already knew a bit as my cousin passed away with the same type after getting into breathing difficulties.
Still haven’t received any invite to a group or clinic and we are nearly a year on. And this is why I’m trying to raise funds for more support for sufferers and family.
Get behind the charity, raise as many funds so we can set up support groups, and hubs for anyone involved with the condition.
As a partner supporting someone with the illness I’d say speak about it more. Ask as many questions as you can.
It feels like a grieving process in away as my partner felt he wasn’t himself anymore and I felt a bit lost with no support trying to support him, so try not isolate family and friends they only want the best for you.”
We need to raise around £700,000 each year to provide services to help people living with epilepsy in Scotland.
To donate, please click here.