Birdsboro >> Imagine going about your normal activities – working, caring for your children or walking down the street – when you suddenly drop to the ground with a seizure.
The episode may last a few seconds, or a few minutes, as your body first goes rigid and then begins to convulse. When it’s over, you may be able to resume your activities – or find yourself in the hospital.
That has been the daily reality since 1993 for 45-year-old Aaron Durso of Birdsboro, who suffers from a generalized seizure disorder. His seizures have never been considered controlled and even with medication, Durso suffers seizures on an almost daily basis.
Durso, who serves as Birdsboro borough manager, has kept his seizure disorder quiet for the past 23 years, but he hasn’t kept it a secret. He said it’s important to him now to talk about his experiences.
No warning
Dr. Marta Jiminez is a neurologist at PMMC who is not involved in Durso’s treatment. According to Jiminez, a seizure occurs when a portion of the brain experiences an abnormal electrical discharge.
There is no warning, no sense that something is about to happen.
“When it does, the person will have an altered level of consciousness, or be unresponsive, and it can take a few seconds or it may seem like it lasts forever,” she said. “It can be followed by a prolonged period where the person is confused, not himself,” adding that the episodes can be localized to one area of the brain or affect the entire brain. A generalized seizure disorder means the seizures affect the entire brain.
Jiminez said in such a seizure, “The body gets rigid – it tenses up. During that time the heart rate goes up and the blood pressure can go up.”
Durso said he most typically has grand mal seizures, or what is called a tonic-clonic seizure. Durso’s may last about two minutes or may occur one after the other over a period of about 10 to 15 minutes.
That first phase is called the “tonic phase” of the seizure, according to Johns Hopkins Medicine, where the patient stiffens and loses consciousness. The second phase is known as the “clonic phase,” where the patient’s muscles spasm and jerk.
Public official going public
Durso and his wife Michelle say they want to help those who with seizures and those who witness them.
“I’m at a place where I realize I might as well be an advocate for people with seizures, because we were lucky and had a good support system. We had to do a lot of reading and a lot of learning, so maybe we can share what we have gone through to help somebody else,” Durso said.
“You can’t be fearful of it. People are afraid to understand, to be around it, to even come to understand what it truly is,” Michelle said.
“If someone has a disability – and often they are an unseen disability – you still have to understand who they are and where they’re coming from. Maybe I can help. That’s what’s important to me now,” Aaron added.
Durso’s seizures began in July 1993, shortly after he received a vaccination while in the U.S. Air Force. He was a newlywed stationed at Elmendorf Air Force Base near Anchorage, Ala. A military police officer at the time, Durso vividly remembers that first seizure.
“My supervisor wanted to meet up with me to talk about the night’s schedule. When I got out of my vehicle, I had a seizure right there on the side of the road,” Durso said. “I went down – I hit the ground – I was violently convulsing.”
The first hurdle was finding out just exactly what was going on. Durso underwent several months of testing, and was discharged from the military in October 1993.
An affirming experience
Over the years the disease has both tested and reaffirmed the Dursos’ faith – in people and in God.
“Early on, I was devastated. My mind was made up to have a career in the military and when that ended, I didn’t know what I was doing,” Aaron said.
“It was a very emotional time – he went through lots of anger, sadness and self-worth issues,” Michelle added.
The young couple initially remained in Alaska, where their first child – daughter Emilee – was born in 1995. In 1996 the pair moved closer to family. That same year, Aaron began studies at Valley Forge Christian College (now University of Valley Forge) where the couple lived on campus.
In the years since Durso and his wife returned to Pennsylvania, the couple has raised two children (son Andrew was born in 1997). Durso obtained his undergraduate degree in Christian education, completed his master’s, has been a full-time pastor, has been a long-time volunteer track and cross country coach in the Daniel Boone School District, has held elective office as a member of Birdsboro borough council and is now the borough manager.
He’s done all this while wrestling with worsening symptoms, doctor visits, changing medications and uncertainty.
Durso walks to work, and relies on family and friends to drive him where he needs to go. He stresses that he has had a very strong support network, which has become invaluable.
“I don’t know where I’d be without my family, close friends and extended church family,” he said.
New symptoms emerge
This winter, a new symptom accompanied one of his seizures. Called Todd’s Paralysis, Jiminez said it mimics the symptoms of having a stroke, leaving the patient with temporary paralysis on one side of the body.
When that happened at work, there was no option but to take Durso to the hospital.
“It isn’t a stroke, but we have to respond like it is, because the one time we don’t respond, it really could be a stroke.”
Because he never knows when a seizure will strike, Durso said he hesitates to go places. He’s not as carefree as he once was.
Michelle Durso worries when she is not with her husband, wondering if he’ll have a seizure that day, wondering how bad it will be, waiting for a phone call.
“I don’t like to leave him alone. There really is no peace of mind,” she said.
Seeking service dog
To give himself and his family some peace of mind, Durso is in the process of obtaining a seizure response dog from a Virginia-based organization called
Service Dogs by Warren Retrievers
.
“We breed, train and place service dogs with people with invisible disabilities – PTSD, diabetes, seizures and autism,” said Lucinda Williams, development director.
The organization breeds only labrador and golden retrievers, and trains them on its 330-acre farm.
What does getting a response dog mean to the couple?
“Complete peace of mind. If I am not here, and Aaron is here alone and he has a seizure I at least know he will be safe,” said Michelle.
“It’s peace of mind for me too, and it’s also comfort,” Aaron added.
When fully trained, the dog will be able to retrieve medication for Durso, open the refrigerator to get a juice, bring him the phone and open doors.
The dog will be by his side constantly. Once a seizure starts, the dog will try to help Durso avoid injury by preventing him from falling and putting itself between Aaron and the danger. If Durso is unconscious, it will lick him and nudge him.
In the Durso house will be a large round disc connected to the phone, and if Durso doesn’t respond, the dog will activate the disc, which calls 9-1-1.
Durso started the formal process of getting the dog in December. He is responsible for paying a portion of the total cost of raising and training the dog he will get. So far, he has raised about 60 percent of his portion of the cost.
Service Dogs by Warren Retrievers puppies first go through a temperament check and some basic training to see if they will make good response dogs. Puppy raisers then take the dogs for about eight months to get them socialized. The puppy then returns to Virginia where the match-up process takes place and intensive training begins.
Williams said Durso’s dog – a yellow lab – has begun training, specific to his needs and will most likely be delivered in August.
Trainers from Service Dogs by Warren Retrievers will live with Durso for the first week. In those first few days, the dog will be introduced to family, neighbors and co-workers. They’ll also visit the EMTs and the police so the dog can meet them.
“This will be life changing for Aaron and his family. For family members there’s always that fear of leaving. With a service dog, the person is no longer alone. They will have a connection, and Aaron will have a better life,” Williams said.
To view Durso’s campaign page or to make a donation visit
www.sdwr.donordrive.com/campaign/Aaron
To find out more about Service Dogs by Warren Retrievers (SDWR) visit www.sdwr.org.
To reach business editor Donna Rovins call 610-850-0272. Email business story ideas to drovins@pottsmerc.com
