Epileptic patients in the Seizure Monitoring Unit (SMU) at the Foothills Medical Centre regularly spend days in isolation as doctors monitor their symptoms, but volunteers are stepping up to provide companionship and critical support when it’s needed most.
The SMU is a clinical space with four treatment beds where the brain waves of patients are constantly monitored and they’re induced into having a seizure to find out more information about their condition.
“The days are long sitting in a unit, waiting to have a seizure. I was in a dark room by myself thinking about maybe having brain surgery, so my mind went to some dark places,” said Derek Payne.
“Normally, when you have epilepsy, you’re hoping not to have a seizure, so sitting in a bed hoping to have one is strange. Hoping that the results of that seizure come back and that you can be one of the lucky ones and be a candidate for brain surgery is even stranger.”
Payne was diagnosed with epilepsy in 1999 and had what he called ‘minor episodes’ for the first decade, but his symptoms soon progressed to the point where he was having several seizures where he lost consciousness or awareness.
He was admitted to the SMU for two weeks to determine if he was a candidate for brain surgery and underwent a successful operation in 2015.
Just one day before Payne’s operation he had six seizures, but following his procedure he hasn’t had one since.
His life-changing experiences have now inspired him to want to give back to other patients. Payne is an active member of the Epilepsy Association of Calgary and he regularly makes weekly visits to the SMU as a volunteer to offer emotional support.
“I remember I had lots of people visiting when I was in the SMU, but I never had an opportunity to talk to someone that actually knew what I was going through,” said Payne.
“So now hearing about how these patients are feeling and how their experiences were very similar to mine just motivated me even more to want to come back.”
‘IT WAS EXTREMELY INSPIRING’: SMU PATIENT
Cody Wilde recently spent 30 days in the SMU late last year and had just under 20 seizures during that time while doctors monitored his condition.
It was an incredibly lonely experience, but the support of volunteers is what gave him that extra boost he needed.
“There aren’t a lot of people that really understand what’s going on from your perspective as someone that has epilepsy. So having people like Derek there, it was extremely inspiring,” said Wilde.
Wilde is now taking medications for his epilepsy condition and has officially returned to work, but he says he couldn’t have done it without the support of volunteers.
He was especially inspired by Linda McClure, a volunteer who was also a former patient at the SMU.
“Linda has one of the largest hearts that I’ve ever met, she would come by every other day and bring a smile to my face,” Wilde said.
I can’t say enough about how much I appreciated her and how much that mitigated my loneliness during that time.”
‘BATTLES OF THE MIND’
McClure is another very impactful volunteer now at the SMU, but she wasn’t diagnosed with epilepsy until she was 49.
She had an unsuccessful brain surgery in 2016 and was once taking six different medications as doctors continued to monitor her symptoms.
Now down to two medications, McClure has become a beacon of hope for those suffering from seizures and wrote a book called ‘Battles of the Mind’ where she details her incredible journey.
“There’s a lot of patients coming from out of province that don’t have family or friends here. I get that, been there, done that. It’s just being able to go in there and be that empathetic person who actually does understand what they’re going through,” she said.
“I think for me, the fact that I have had pretty much every procedure that’s available, done to this head, I can speak to a lot of different aspects of the treatments. It’s a good feeling to give back and be there for people.”
That emotional impact is particularly felt by current patients like Melanie Ormond who has been admitted to the SMU several times since 1997.
Having undergone brain surgeries and several testing procedures she sometimes finds it difficult to have hope, but she no longer feels alone.
“Derek and Linda both came in the other day, they introduced themselves and we shared stories,” said Ormond.
“We were talking about how nice this would have been before our surgeries to talk to somebody who had gone through it. It’s about quality of life, these seizures may not go away forever, but we can still focus on functioning in a way that you’re living a fulfilled life.”
Source: iheartradio.ca, Mark Villani