Epilepsy affects your daily life

A diagnosis of an auto immune disorder means a person will be living with that illness every day for the rest of their life. There are treatments that can help those afflicted live a more productive life, but there are no cures.

Some may have no idea a person suffers from one of these illnesses, while others may look at them as different.

M Magazine profiled people who suffer from Parkinson’s disease, multiple sclerosis, myasthenia gravis and epilepsy, about their illness and their positive attitude on dealing with what life has dealt them.

On a more even keel Story by Lawrence Silver

Keith Eveland has a defibrillator in his heart that goes off for 30 seconds every five minutes. This may sound unusual, but for a person with epilepsy it helps them to live a more normal life.

Epilepsy is a brain disorder in which a person is prone to having recurring seizures.

The seizures are caused when there is a disturbance in the way nerve cells in the brain send electrical signals.

Eveland, 34, of Waukesha, says he’s been treated poorly most his life and has lost full custody of his children because of something that is out of his control.

At the height of his disease, he was suffering from seven to eight seizures a day. That is no longer the case with the help of the defibrillator.

Today he owns an auto body business and lives alone. But the road to independence was an arduous one.

When he was diagnosed with the disease at 6, few people knew anything about epilepsy.

Eveland says at age 8, he was kicked out of a local Boy Scout troop as soon as it was discovered he had epilepsy.

"You were treated like a school district would treat a sex offender," Eveland says. "But it wasn’t something you did. You were born with it. People didn’t know a lot about it back then."

Today the Epilepsy Foundation Web site reports 2.7 million Americans of all ages are affected by epilepsy and seizures.

Eveland says he controlled epilepsy most of his life with medications. But in 2001, the seizures started coming more rapidly and were more severe. It was then doctors discovered he was also being affected by tubular sclerosis, a disease that leaves calcium deposits on different areas of the body including the brain. The tubular sclerosis causes his epilepsy seizures to be more severe.
Between 2001 and 2003, he was having seven to eight seizures a day, and living in a home next to his parents in Crandon. "It was almost like I didn’t have a life," Eveland says. "I couldn’t drive and when the kids were around they had to be leery."

It was at that time he decided to have the defibrillator, known as a vega nerve stimulator, connected to his heart and brain. Now, his life is more stable and Eveland plans to spend that time enjoying life with his children.

Parkinson’s means a different pace / Story by Cathy Breitenbucher

When longtime UW-Milwaukee professor Bob Magill retired two years ago, his plans weren’t that different from those of other retirees: travel, write a book, spend time with family.

Magill, however, had a sense of urgency to what should have been a shift toward a leisurely lifestyle. He had been diagnosed with Parkinson’s disease a couple of years earlier and worried he should be squeezing as much into life as possible.

"For a while, I was going at super speed to get things in shape financially, because I didn’t know how long I’d be sharp mentally," he explains. "I was driving everyone crazy, and I had to slow it down."

Parkinson’s is a degenerative disorder of the nervous system. In Magill’s case, early symptoms included sleep problems, a shuffling gait, trembling hands, depression and a facial muscle condition commonly called "Parkinson’s mask."

"Everyone knew there was something wrong but me," says Magill, now 65.

The East Side Milwaukee resident credits exercise with helping him sustain muscle tone and overall fitness. A few accommodations — a ride to his tennis matches because he no longer drives, a yoga class geared to Parkinson’s patients, and a three-wheeled bicycle to help maintain balance — are all he needs to work out.

On a recent trip to the lava fields of the Galapagos Islands, "I made it with a cane," Magill boasts. Last month, he went snorkeling in Florida.

Besides traveling, Magill and his wife, Peggy, are avid fans of the ballet and theater, and also enjoy dining out, reading and spending time with their two children and grandson. Magill says family dynamics can change when a person is diagnosed with Parkinson’s.

"It changes the whole balance of power in the family," he explains. "A lot of men had been heads of corporations, and now they have trouble tying their shoes. People need to be direct — this disease puts pressure on your caregiver and your kids worry about how long you’ll be around."

Parkinson’s patients usually are between the ages of 50 and 79, and it’s a slowly progressive disorder. Actor Michael J. Fox and boxing legend Muhammad Ali have Parkinson’s, and Pope John Paul II exhibited symptoms for years before his death in 2005. Its cause is unknown.
On the medical front, Magill is part of a project at Aurora Sinai Medical Center studying the effectiveness of patch-delivered dopamine, which guarantees a constant flow of the important function-preserving drug to the body. Magill is writing a book about the impact of Parkinson’s on him and his family.

When first diagnosed, he wrestled with whether he should inform his students in UW-Milwaukee’s School of Social Welfare. He soon decided that by telling them, he could provide them with an education far beyond the course syllabus.

"I told them, my mind is still working, but I can’t speak as well," he recalls. "They were wonderful, uniformly. They weren’t condescending. They did disagree with me in class, but that’s good. I welcome debate."

Reaching out to others helps MS patient / Story by Cathy Breitenbucher

In his career as a litigation attorney, Jeffrey N. Gingold learned to keep his cool in the courtroom. Now, Gingold literally must keep from overheating so he does not become incapacitated by multiple sclerosis.

Gingold, 46, has spent the 10 years since his diagnosis learning coping skills. He looks at his life as one with reasonable boundaries, not one with limitations.

"Physically, I may present myself as looking OK, but I don’t do stairs and I don’t drive in certain circumstances," he explains. "Heat and humidity are to me like kryptonite to Superman — it’s an immediate drain.

Once I overheat, my hands and body tremor, and I lose coordination and balance."

Heat sensitivity is one of the many sensory symptoms that can come with MS, a disorder in which nerve fibers in the eyes, brain and spinal cord are damaged or destroyed. In addition to motor symptoms such as weakness and clumsiness, patients also can experience depression and mental impairment.

The onset of MS generally is between the ages of 20 and 40. Because a patient’s condition can improve and then deteriorate, treating MS is like shooting at a moving target. A variety of drug therapies is used, and exercise is encouraged for most patients.

"Sixty-five percent of patients will experience some level of cognitive disability and challenges," says Gingold. "When they are unprepared and no one has asked them about it, they don’t even feel comfortable telling a spouse. They won’t get their questions answered and will miss out on available treatment."

Gingold, who lives in Milwaukee, is an active advocate with the National MS Society Wisconsin Chapter, headquartered in Hartland. He recently published a book, "Facing the Cognitive Challenges of Multiple Sclerosis" (www.demosmedpub.com) to share his experiences and offer hope.

Asked if he finds his volunteer work more fulfilling than the law and teaching career he left five years ago, Gingold gives a quick "yes."

"The secret of volunteering is that people who are volunteering get more out of it than those they are trying to help," he explains. "I talk with people from the newly diagnosed to those who have had MS for 25-plus years. You see the devastation in all forms, and it propels me to stay active."
When Gingold was diagnosed, he and his wife were expecting their second child.

"I used to feel a little sad when our girls started walking faster than I did, but you get beyond that," he says. "It’s useless to complain — why be consumed by it?"

While avoiding fatigue is a constant balancing act, Gingold has found that ice skating is an ideal form of exercise because the cool of the rink prevents him from overheating. He’s a member of the West Allis Speedskating Club and works out at the Pettit National Ice Center.

"Years ago, I did a 500-meter time trial against Tucker Fredricks when he was just a kid. Now I can say I’ve skated against an Olympian," he says with pride.

Under control Story by Lawrence Silver

Kevin Laufer’s wife almost dumped him after their second date. Laufer took his wife, Kristine, to a friend’s wedding. After dinner had been served and the dance began, Laufer’s eyes started to droop and speech started to slur. Kristine Laufer said it appeared her future husband was drunk, which was surprising since she hadn’t seen him take a drink the entire night. "I thought he must be hiding in the corner taking shots with his buddies," Kristine says.

Turns out Kevin wasn’t getting drunk. He was showing symptoms of myasthenia gravis, a common primary disorder of neuromuscular transmission.

"He was slurring his words and I thought he was the biggest jerk," Kristine says. "But when we got home, he got better, and he told me he had MG."

Myasthenia gravis, or MG as it is commonly known, is an autoimmune disorder affecting neuromuscular transmission.

Kevin, 36, says the immune system attaches itself to the muscle and fights off the charge coming from nerve endings.

The charges are reduced and fatigue starts to set in. For Laufer, symptoms first arrived when he was 17, but he didn’t do anything about it until he was 19, when he came home from a vacation and was unable to speak.

Laufer says he was having trouble swallowing at the time. "I just didn’t pay attention," Laufer says. "I just didn’t think much of it."

The Myasthenia Gravis Foundation of America Web site says there are 36,000 documented cases of MG in America. But the foundation predicts many more go undocumented because the disease is under diagnosed.

Laufer says he was lucky because he had a doctor able to diagnose him immediately. Since then he’s been able to control the disease fairly well with medication.

Given a spectrum of 1 to 10, Laufer of Greenfield puts himself at a 2 or 3 as far as severity of the disease, even though his wife puts him at a 5. He says he leads a fairly sedentary lifestyle as a data analyst for a financial company in Brookfield.