Derek Kennedy is 38 and farms with his parents near Ballon in Co Carlow. He was diagnosed with epilepsy at the age of two when he had his first grand mal or tonic-clonic seizure. That led to him being put on anticonvulsant medication.
“I was seizure-free until I was 19,” he says, “but then I sustained a concussion during a rugby match while in college in Manchester and had a seizure shortly afterwards.”
This led to him returning home, but, thankfully, he went on to be seizure-free for several years – and to achieve an honours degree in psychology from the Open University in 2005.
Travel took his fancy after that and everything went well for him in the two years that he was away as his medication worked.
However, despite a lot of medication every day, in 2007 petit mal seizures became sporadic and frequent after he returned home. He had surgery to help his condition in February 2014.
Derek is reasonably philosophical about the overall challenge of having epilepsy.
“I’ve been very lucky really,” he says. “I’ve let epilepsy be part of my life but not be my life.
“While I have it, there are very few things I’ve been restricted on. I played rugby with Carlow for eight years and was able to travel to Australia and more. I know people who can’t go outside the door because they are having several seizures a day. That’s no life.”
NOT ABLE TO DRIVE
Being unable to drive because of the condition is particularly annoying for Derek.
“It’s desperate relying on other people all the time when I want to go anywhere. Also, from a farming viewpoint, I can’t drive or operate farm machinery. This, again, leaves me relying on others – in this case, my father.”
Derek had hopes of being able to drive again this March given that he was so close to meeting the one-year-free rule, but a recent seizure dashed his hopes of that.
“It was a real kick in the teeth,” he says.
SURGERY – WHAT HAVE I TO LOSE?
Having surgery was a huge undertaking, he says. But being on so much medication he felt he had nothing to lose.
Tests prior to the surgery were extremely complex, he adds.
“When I think of it, as well as spending 11 days in the epilepsy monitoring unit at Beaumont Hospital where they had to induce a seizure to determine what part of my brain was affected, half my brain was later frozen in what’s called a WADA test prior to the operation. Looking back, it was a huge thing to do really.”
Derek spent four days in hospital after the operation and had 28 staples in his head.
“I joked with my friends about how they looked like train tracks,” he says.
IN BED DURING LAMBING
While his recovery went as expected, it wasn’t without its challenges and he unfortunately had another seizure a couple of weeks after the operation.
“That was a real kick in the teeth. I didn’t get any warning and fell and struck my head. Another MRI was done and it was discovered that I had a small bleed, so I was put back on steroids and extra anticonvulsant medication. The steroids were a killer – I’ll never forget them.”
A month in bed at home followed.
“It was so frustrating as it was lambing time and I wanted to be in the middle of it.”
Gradually, he began to feel better and everything was progressing very well until the recent seizure.
Apart from the frustration about not being able to drive, the other aspect of having epilepsy that really annoys Derek is listening to people generalising about the condition.
“Often you get this thing from people of: ‘You shouldn’t be going to a nightclub, should you? Wouldn’t the lights cause you to have a seizure?’ Strobe lights are not a trigger for everyone with epilepsy, but people think they are. Epilepsy affects everyone differently. The assumptions are there without the proper knowledge of the condition.”
He admits that he has been too flippant about epilepsy at times.
“I shouldn’t be really,” he says. “It hasn’t stopped me doing anything I really wanted to do. But at the same time I’ve done things that, in hindsight, I shouldn’t have done, like bungee jumping and skydiving. The desire to do things is there though, and I get frustrated being told that I can’t.”
Talking about the medical team at Beaumont, Derek said: “They are absolutely marvellous.”
AFFECTS ONE IN 115 IRISH PEOPLE
One in every 115 (37,000) Irish people have epilepsy.
In 40% of cases, it results from injury to the brain or a bacterial infection like meningitis. In the other 60% of cases there is no known direct cause.
“We’re still in the dark about the causes,” Paul Sharkey of Epilepsy Ireland says.
“There is a lot of research going on at the moment, particularly into the genetic component, but this malfunction of the brain can happen to anyone at any stage of life.”
Many people keep the condition hidden, however.
“Often within families you’ll hear people talk of having fainting episodes or turns or blackouts rather than seizures,” he says.
“They may have trouble saying the word epilepsy because of the stigma surrounding the condition in the past. It used to be thought of as a psychiatric condition, but it’s not a mental health condition at all. It is a condition that affects brain function. It lasts seconds or minutes and then the brain continues its normal function after the seizure.”
There are a good few other myths out there in relation to epilepsy, he states.
“Some people think you can catch it – you can’t. Another is that people think there is only one type of epilepsy, the sort where the person goes stiff, falls to the ground and convulses. The reality is that this is only one of many types and it’s not even the most common.”
A TYPE THAT MAY LOOK LIKE DRUNKENNESS
There is another type of seizure where the person goes into an altered state of consciousness, the training and communications manager at the Irish Epilepsy Association says.
“They are called complex partial seizures and the person could literally walk under a bus. The problem with that is that, to a stranger nearby, it’s as if that person could be drunk or on drugs, but they’re not. They can last from seconds to half an hour. Overall, the main advice is, if you don’t know what you’re dealing with, call for medical help.”
FLASHING LIGHTS – DO THEY ALWAYS TRIGGER SEIZURES?
It is a common belief that everyone with epilepsy is affected by flashing lights.
“Only 3% to 5% of people with epilepsy are affected by what’s called photosensitivity,” Paul Sharkey says. Usually it is picked up when the person has an EEG during diagnosis so they’ll know to stay away from situations where there is strobe lighting or flashing images.”
RESENTING RESTRICTION
“We encourage people to live as normal a life as possible, but one of the problems with epilepsy is that people with the condition often say that all they hear is don’t, can’t, shouldn’t, mustn’t. No matter what they want to engage in, they’re told no. In the end though it comes down to: ‘Do I want to stay seizure-free?’ The reality is that you’re increasing risk doing some things. While it’s like mammy always telling you not to do things, at the end of the day there is a real reason why you shouldn’t.”
See www.epilepsy.ie.
www.epilepsy.ie
HOW TO HELP
What should a person do to help if they see someone having a seizure?
There is a list of dos and don’ts, he says.
• Don’t try and stop the movement by holding the person down.• Create a human cushion by linking your fingers together under their head if you can. That way you become like a cradle, preventing them from banging their head off the ground. • Use a coat, jumper, blanket, pillow, whatever is to hand, to keep the person protected from hard objects in the area. • Don’t give them anything to eat or drink until they have fully regained consciousness.• Never put a spoon in the person’s mouth – this is bad, old advice.WHEN SHOULD 999 BE CALLED?
“Medical attention is usually only necessary if the person has injured themselves when they fell,” Paul says.
“If you know the person has epilepsy, medical intervention is only required if it goes beyond what is normal for that person. The seizure shouldn’t continue for more than five minutes. If the person is still seizing after five minutes you should call for help. That’s the internationally recognised cut-off point.
“Also call 999 if the person goes from one seizure into another without recovery – this is called a cluster.
“This would be fairly evident when the person goes from the convulsive back into the tonic or stiffening state.”
Derek Kennedy is 38 and farms with his parents near Ballon in Co Carlow. He was diagnosed with epilepsy at the age of two when he had his first grand mal or tonic-clonic seizure. That led to him being put on anticonvulsant medication.
“I was seizure-free until I was 19,” he says, “but then I sustained a concussion during a rugby match while in college in Manchester and had a seizure shortly afterwards.”
This led to him returning home, but, thankfully, he went on to be seizure-free for several years – and to achieve an honours degree in psychology from the Open University in 2005.
Travel took his fancy after that and everything went well for him in the two years that he was away as his medication worked.
However, despite a lot of medication every day, in 2007 petit mal seizures became sporadic and frequent after he returned home. He had surgery to help his condition in February 2014.
Derek is reasonably philosophical about the overall challenge of having epilepsy.
“I’ve been very lucky really,” he says. “I’ve let epilepsy be part of my life but not be my life.
“While I have it, there are very few things I’ve been restricted on. I played rugby with Carlow for eight years and was able to travel to Australia and more. I know people who can’t go outside the door because they are having several seizures a day. That’s no life.”
NOT ABLE TO DRIVE
Being unable to drive because of the condition is particularly annoying for Derek.
“It’s desperate relying on other people all the time when I want to go anywhere. Also, from a farming viewpoint, I can’t drive or operate farm machinery. This, again, leaves me relying on others – in this case, my father.”
Derek had hopes of being able to drive again this March given that he was so close to meeting the one-year-free rule, but a recent seizure dashed his hopes of that.
“It was a real kick in the teeth,” he says.
SURGERY – WHAT HAVE I TO LOSE?
Having surgery was a huge undertaking, he says. But being on so much medication he felt he had nothing to lose.
Tests prior to the surgery were extremely complex, he adds.
“When I think of it, as well as spending 11 days in the epilepsy monitoring unit at Beaumont Hospital where they had to induce a seizure to determine what part of my brain was affected, half my brain was later frozen in what’s called a WADA test prior to the operation. Looking back, it was a huge thing to do really.”
Derek spent four days in hospital after the operation and had 28 staples in his head.
“I joked with my friends about how they looked like train tracks,” he says.
IN BED DURING LAMBING
While his recovery went as expected, it wasn’t without its challenges and he unfortunately had another seizure a couple of weeks after the operation.
“That was a real kick in the teeth. I didn’t get any warning and fell and struck my head. Another MRI was done and it was discovered that I had a small bleed, so I was put back on steroids and extra anticonvulsant medication. The steroids were a killer – I’ll never forget them.”
A month in bed at home followed.
“It was so frustrating as it was lambing time and I wanted to be in the middle of it.”
Gradually, he began to feel better and everything was progressing very well until the recent seizure.
Apart from the frustration about not being able to drive, the other aspect of having epilepsy that really annoys Derek is listening to people generalising about the condition.
“Often you get this thing from people of: ‘You shouldn’t be going to a nightclub, should you? Wouldn’t the lights cause you to have a seizure?’ Strobe lights are not a trigger for everyone with epilepsy, but people think they are. Epilepsy affects everyone differently. The assumptions are there without the proper knowledge of the condition.”
He admits that he has been too flippant about epilepsy at times.
“I shouldn’t be really,” he says. “It hasn’t stopped me doing anything I really wanted to do. But at the same time I’ve done things that, in hindsight, I shouldn’t have done, like bungee jumping and skydiving. The desire to do things is there though, and I get frustrated being told that I can’t.”
Talking about the medical team at Beaumont, Derek said: “They are absolutely marvellous.”
AFFECTS ONE IN 115 IRISH PEOPLE
One in every 115 (37,000) Irish people have epilepsy.
In 40% of cases, it results from injury to the brain or a bacterial infection like meningitis. In the other 60% of cases there is no known direct cause.
“We’re still in the dark about the causes,” Paul Sharkey of Epilepsy Ireland says.
“There is a lot of research going on at the moment, particularly into the genetic component, but this malfunction of the brain can happen to anyone at any stage of life.”
Many people keep the condition hidden, however.
“Often within families you’ll hear people talk of having fainting episodes or turns or blackouts rather than seizures,” he says.
“They may have trouble saying the word epilepsy because of the stigma surrounding the condition in the past. It used to be thought of as a psychiatric condition, but it’s not a mental health condition at all. It is a condition that affects brain function. It lasts seconds or minutes and then the brain continues its normal function after the seizure.”
There are a good few other myths out there in relation to epilepsy, he states.
“Some people think you can catch it – you can’t. Another is that people think there is only one type of epilepsy, the sort where the person goes stiff, falls to the ground and convulses. The reality is that this is only one of many types and it’s not even the most common.”
A TYPE THAT MAY LOOK LIKE DRUNKENNESS
There is another type of seizure where the person goes into an altered state of consciousness, the training and communications manager at the Irish Epilepsy Association says.
“They are called complex partial seizures and the person could literally walk under a bus. The problem with that is that, to a stranger nearby, it’s as if that person could be drunk or on drugs, but they’re not. They can last from seconds to half an hour. Overall, the main advice is, if you don’t know what you’re dealing with, call for medical help.”
FLASHING LIGHTS – DO THEY ALWAYS TRIGGER SEIZURES?
It is a common belief that everyone with epilepsy is affected by flashing lights.
“Only 3% to 5% of people with epilepsy are affected by what’s called photosensitivity,” Paul Sharkey says. Usually it is picked up when the person has an EEG during diagnosis so they’ll know to stay away from situations where there is strobe lighting or flashing images.”
RESENTING RESTRICTION
“We encourage people to live as normal a life as possible, but one of the problems with epilepsy is that people with the condition often say that all they hear is don’t, can’t, shouldn’t, mustn’t. No matter what they want to engage in, they’re told no. In the end though it comes down to: ‘Do I want to stay seizure-free?’ The reality is that you’re increasing risk doing some things. While it’s like mammy always telling you not to do things, at the end of the day there is a real reason why you shouldn’t.”
See www.epilepsy.ie.
www.epilepsy.ie
HOW TO HELP
What should a person do to help if they see someone having a seizure?
There is a list of dos and don’ts, he says.
• Don’t try and stop the movement by holding the person down.• Create a human cushion by linking your fingers together under their head if you can. That way you become like a cradle, preventing them from banging their head off the ground. • Use a coat, jumper, blanket, pillow, whatever is to hand, to keep the person protected from hard objects in the area. • Don’t give them anything to eat or drink until they have fully regained consciousness.• Never put a spoon in the person’s mouth – this is bad, old advice.WHEN SHOULD 999 BE CALLED?
“Medical attention is usually only necessary if the person has injured themselves when they fell,” Paul says.
“If you know the person has epilepsy, medical intervention is only required if it goes beyond what is normal for that person. The seizure shouldn’t continue for more than five minutes. If the person is still seizing after five minutes you should call for help. That’s the internationally recognised cut-off point.
“Also call 999 if the person goes from one seizure into another without recovery – this is called a cluster.
“This would be fairly evident when the person goes from the convulsive back into the tonic or stiffening state.”
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