ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 03-25-2007, 05:30 PM #1
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Join Date: Aug 2006
Location: North Carolina
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BobbyB BobbyB is offline
In Remembrance
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Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
Default A difficult diagnosis Jimmy Mastranunzio and family soldier on against ALS

A difficult diagnosis Jimmy Mastranunzio and family soldier on against ALS

12-year-old Tanner Mastranunzio helps his younger brother Kevin, 2, with a riding toy as their father Jimmy helps in front of their home near Rockwell. Time spent playing outside is more precious now that Jimmy Mastranunzio is suffering from amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's disease, Photo by Jon C. Lakey, Salisbury Post.
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By Katie Scarvey

Salisbury Post

ROCKWELL — Jimmy Mastranunzio remembers the day when he decided he needed to go to the doctor.

Living in Pineville at the time, he was outside in his yard, putting pull ties on a fence he was building when he realized he didn't have the strength in his hands to do the task.

The thought had previously crossed his mind that perhaps something was wrong — he'd had a few problems at his job running packaging machines at Frito-Lay.

His doctor referred him to a neurologist, who had his suspicions and referred Jimmy to Dr. Jeffrey Rosenfeld at Carolinas Medical Center.

After two days of testing in June 2005, Jimmy received a diagnosis. He had amyotrophic lateral sclerosis — ALS — a fatal neuromuscular disease.

He was just 36, with a wife and four children, including a two-month old baby.

It wasn't a total shock, he says, since he'd done some research on the Internet, plugging his symptoms into a search engine and coming up with ALS — often called Lou Gehrig's disease — as a possibility.

Still, actually hearing the diagnosis spoken aloud was "a nightmare," he says — "the worst case scenario."

He still didn't really believe it, he said.

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Amyotrophic lateral sclerosis is a rapidly progressive neurological disease that attacks the nerve calls that control voluntary muscles. The nerve cells degenerate and die and stop sending messages to the muscles, which causes them to weaken and waste away. Eventually, the brain loses its ability to start and control voluntary movement. In later stages of the disease, muscles in the diaphragm and chest wall fail, and individuals lose the ability to breathe without a ventilator.

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Since he was diagnosed two years ago, Jimmy — with a lot of support from his family and friends — has come to accept his new reality.

When asked how he copes, he points to the people around him.

"All them," he says. "Just having them around."

They are his wife, Cyndi, and his four children: Haley, 14, Tanner, 12, Jaxon, 4, and Kevin, almost 2.

Jimmy's life didn't change immediately in big ways. He began to read a lot about ALS so he'd know what to expect.

He continued to work at Frito-Lay for almost a year after diagnosis. But lifting was part of his job, and that was growing increasingly difficult.

"I didn't want to hurt myself or anyone else," he said of his decision to stop working.

The disease seemed to be progressing up his arms, which were getting weaker and weaker.


The Mastranunzio family sticks together - Haley, 14, Jimmy holding Tanner, 12, Kevin , 2, and Jaxon, 3, and wife and mother Cyndi. Photo by Jon C. Lakey, Salisbury Post.
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These days, he finds it difficult to do things others take for granted — like fastening buttons and changing diapers.

Although it's mostly affected his arms, lately the disease seems to be affecting his right leg, Cyndi says. It has also affected his speech to some degree. Although Jimmy is easily understood, he slurs some words, particularly if he's tired, he says.

He eats more slowly these days because it takes a lot of energy to chew food.

He can still lift light things and continues to play golf, one of his passions.

Swinging a club has become difficult, he says, because of his weak grip, and he sometimes worries that the club will fly out of his hand. But golf is not something he'll give up without a fight.

"I'll keep playing as long as I can," he says. "I love it so."

Playing, however, takes a toll on him, draining him of energy. After he plays, Cyndi says, it takes him a few days to recover.

His doctor has told him that being active is good, but he's also been told not to overdo it, Cyndi says, or the disease will progress faster than it would otherwise.

Tanner misses the games of catch that he used to play with his dad. He's now doing chores that his dad used to do, like mowing the lawn, a task that Cyndi helps with as well.

When the children first heard about their father's diagnosis, it didn't mean as much to them, Cyndi says.

Now, as they are seeing the effects ALS has on their father, the emotional impact is greater.

Still, Cyndi says, "I feel like they're handling it pretty good for kids their age."

There is no good treatment for ALS.

Jimmy takes a drug called Rilutek, which slows progression of the disease, but not by much.

Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of ALS sufferers will survive far longer — for 10 or more years.

It's a tough prognosis for a young man with young children who is used to making a living.

"I miss working," says Jimmy. "I see it as my job, providing for my family."


12-year-old Tanner helps Kevin, who is 2, ride a toy as other brother Jaxon, 3, comes down the sidewalk infront of their home near Rockwell. Photo by Jon C. Lakey, Salisbury Post.
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He misses the everyday things that he used to do.

The clinic gives him access to some gadgets to make functioning easier — devices that help him get the gas tank of his car open, tools to help him button and zip, tasks that most of us take for granted but which are difficult for someone with weak hands.

Cyndi soldiers on.

"I think I'm doing OK," Cyndi says. "I was always taught from when I was little that God won't give me more than I could handle."

"God and these children are what keep us sane," Jimmy says. "You can't fall apart. We've been blessed with four healthy, happy, energetic children."

The Mastranunzios have had more than their share to handle in the past few years, with Cyndi's mother dying of lung cancer in December 2005 and her brother dying in February of the same year.

"It has not been a good couple of years," Cyndi says.

With Jimmy not being able to work, the disease has been a hardship financially for the family. The family now lives in the home that once belonged to Cyndi's mother, next door to Cyndi's sister, Traci
Jimmy Mastranunzio sits on the coach with one of his sons, Tanner, and his wife, Cyndi, at his home near Rockwell. Jimmy has amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig's disease. He is not working and is on disability. Photo by Jon C. Lakey, Salisbury Post.
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Poole and her family. While they're grateful to have it, it only has three bedrooms, which means the three boys have to share a room. They'd love to be able to add some space but can't afford to.

If you'd like to help the family through a financial donation, a fund has been set up at Citizens South Bank, P.O. Box 68, Rockwell N.C. 28138. Call the bank at 704-279-7251 for information.

For the second year in a row, the Mastranunzios have put together a team to participate in the Charlotte Walk to D'Feet ALS on May 19 at Marshall Park.

Money goes to support ALS research as well as local patient and community services.

If you'd like to donate to Jimmy's team, Team Nunzio, go to www.catfishchapter.org.

Link to Charlotte Walk and then link to Team Nunzio.

Contact Katie Scarvey at 704-797-4270 or kscarvey@salisburypost.com.
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