Pittsburgh Post-Gazette
Thursday, January 05, 2006
By Kathleen Ganster

Potluck suppers bring friends and neighbors together, but there is one in Shaler that is far from typical.

Instead of everyone bringing a dish to share, nearly 40 families are pitching in to bring a supper every weekday to their neighbors, Eric and Mary Lou Zydel, and their children.

Mrs. Zydel has amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig's disease. The baseball great was the disease's most famous victim.

Her husband is her primary caregiver while also taking care of their two children, Courtney, 12, and Tyler, 8, and working from home at his engineering job.

"I call them the dinner club," Mr. Zydel said of his neighbors. "They bring us a complete meal every night, Monday through Friday."

Both Mr. and Mrs. Zydel are from the Pittsburgh area but were living near Philadelphia in 2001 when Mrs. Zydel began experiencing weakness in her right arm. The doctors discovered that she had had a mild stroke. Then 39 years old, Mrs. Zydel's condition was chalked up to a blood disorder.

"Mary Lou has Factor 5 Leiden, which causes the platelets in the blood to stick -- clot -- when they shouldn't. That is what caused the stroke," Mr. Zydel said.

After the stroke and through the spring of 2002, Mrs. Zydel progressed through physical therapy to regain strength and coordination on her right side when suddenly she began to experience even greater weakness.

"She was fumbling things, dropping them. Mary Lou was petrified," Mr. Zydel said.

At first, the doctors were puzzled and conducted tests from August to October of 2002. "At that point, the doctor said, 'I'm at a loss. I'm going to refer you to someone who I think can help you,' " Mr. Zydel said.

Since Mrs. Zydel was continuing to lose muscle strength the doctor prescribed medication to relieve some of the symptoms. "He gave her a prescription, and when I picked it up and read the literature that came with it, I saw that it was an ALS drug. That was a pretty startling moment for me," he said.

That December, the couple saw Dr. Terry Heiman-Patterson, a specialist, who told them Mrs. Zydel most likely had the disease. "It is a disease of exclusion," Mr. Zydel explained. "There is no real test to determine if someone has ALS. They more or less rule out every other disease."

ALS is a neurological disorder with no known cause and no known cure. As Mr. Zydel explained it: "The neurons are at the end of your nerves and ALS kills them. They are the connector from the brain to the muscle -- like a wire. When the brain signals the arm to move, the muscle can't get the signal as the connector, the neuron, is dead."

All of the voluntary muscles are affected. One by one, the person loses use of every muscle. The life expectancy after diagnosis, Mr. Zydel said, is two to five years. "You basically become a prisoner in your own body," he said. At any given time, about 22,600 Americans live with the disease.

The news was devastating to the Zydels. "Mary Lou is a wonderful person. She wears her heart on her sleeve and was very emotional at the time. She just didn't want to accept the news," Mr. Zydel said.

Once again, she went through a battery of tests. "It was somewhat comforting but somewhat sad all at the same time when it became clearer that she had ALS," he said.

As the disease progressed, Mr. Zydel told his wife that if there was anything she wanted to do, now was the time. "She told me that she wanted to move back to Pittsburgh," he said.

In December 2003, the family moved into their home in Wible Woods in Shaler.

Last October, as neighbors were setting up the car pool schedule, they realized how demanding Mr. Zydel's schedule had become. His wife's disease had progressed to the point that her total care was dependent on her home health aide and Mr. Zydel.

Neighbor Angela Quinn asked Mr. Zydel what could be done to help, and the dinner club was born.

"I put fliers out just once in our plan, and we have about 85 percent of the families participating," Mrs. Quinn said. "I told people, 'Just make more of what you are making for your own family for Eric and his kids.' "

Each family prepares a meal and delivers it to the Zydels on a rotating schedule.

"We are talking a complete meal here," Mr. Zydel said. "A salad, bread, main dish and dessert."

He also asks that neighbors visit for a bit, if their schedules allow. "It is important for people to know that Mary Lou isn't contagious. We want people to know what ALS is all about," he said.

The families have been providing dinner since early October and plan to continue indefinitely. On the weekends, the Zydels either eat leftovers or depend on others, such as Mr. Zydel's cousin, Mike Tysarczyk.

"I don't cook, so I pick up something on the way, then go visit," Mr. Tysarczyk said. "I call it the 'Pizza, Hoagie, Chicken Club.' "

Everyone is moved by the Zydels' story, Mrs. Quinn said.

"Eric is wonderful. He is so devoted to Mary Lou. And this has been good for the neighborhood as well. We are a fairly new plan and now many of us know each other, know our kids and have a common cause. We now have a connection to everyone."