Rising above epilepsy

Calvin Winterbottom, Carterton, lives with epilepsy. PHOTO/EMILY IRELAND

Calvin doesn’t let epilepsy control his life

Calvin Winterbottom only gets a few seconds warning before an epileptic episode begins.

And with many close calls linked to the medical condition, he says living with epilepsy is like “living with a death sentence over you all the time”.

Calvin is vice-president of education for Masterton Toastmasters and was diagnosed with epilepsy at the age of 6.

He now uses his passion for public speaking to spread awareness about the condition.

“Epilepsy is very hard mentally and physically – mentally especially.

“To put epilepsy in easy terms to understand – your brain short-circuits, and you can lose control of all or some of your body and sometimes consciousness.

“It can happen any time, and anywhere”.

At the beginning of his diagnosis, it was normal for Calvin to have five seizures a week, and by the late 80s until now, his epileptic episodes had reduced to once every two years.

But the severity is and has been life-threatening.

“It’s like you’re always aware of the fact that it can kill you whenever it wants to.

“I have been dead once, which makes that even more apparent.”

When Calvin was 18, he went on holiday with his parents and sister.

“We went to the beach and we tried our hand at surfing.

“A big wave wiped me out and as I went down, I had an epileptic seizure.

“I had no idea what was going on, next thing I knew I was being given the kiss of life by a lifeguard.

“Luckily someone had noticed me go down.”

This epileptic episode was what Calvin categorised as “grand mal” – loss of consciousness, followed by muscle convulsions that usually last for less than two minutes.

Another type, which has caused Calvin ongoing issues is what Calvin categorises as an “epileptic drop attack”.

“You stay conscious, but you just drop straight down on top of yourself.

“In 1996 and 1998, I suddenly dropped straight down . . . breaking my left ankle in 1996, and then my left leg in 1998.

“Both times I was taken to hospital but was given no help to walk again – actually due to medical negligence, I nearly got gangrene.

“The negligence eventually gave me arthritis, so now I use a walking trolley, despite only being 48.”

Because people with epilepsy generally were not permitted to drive, living with the medical condition can be isolating.

But Calvin said his involvement with Toastmasters helps with this.

Calvin’s last seizure was in April, 2017 and with the episodes occurring every two years, Calvin said now more than ever it was vital that he did not let his condition control his life.

“It’s hard work, but it’s better to actually keep on fighting against it, rather than letting it control you.”

Seizure first aid

If you come across someone experiencing a seizure:

• Call 111
• Keep other people out of the way
• Clear hard or sharp objects away from the person
• Don’t try to hold them down or stop the movements
• Place them on their side, to help keep their airway clear
• Try to time the length of the seizure
• Don’t put anything in their mouth
• For more information on epilepsy, visit epilepsy.org.nz