Walk for ALS... Please help support!

A difficult diagnosis Jimmy Mastranunzio and family soldier on against ALS


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.

*

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.

*

Since he was diagnosed four 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, 16, Tanner, 14, Jaxon, 6, and Kevin, almost 4.

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.

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.

A couple of years ago, he could still lift light things and continued to play golf, one of his passions.

Swinging a club had 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 gave up without a fight.

"I kept playing as long as I could," he says. "I loved it so."

Playing, however, took a toll on him, draining him of energy. After he played, Cyndi says, it toke 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."


My fiancee and I recently accepted the challenge of participating in The ALS Association's Walk to Defeat ALS in support of her best friend's brother.

The ALS Association is the only non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

I am asking you to help by supporting our fund-raising efforts with a donation. Your tax-deductible gift will make a difference in the lives of many!

It is faster and easier than ever to support this great cause - you can make your donation online by simply clicking on the link at the bottom of this message.


Any amount, great or small, helps in the fight. I greatly appreciate your support and we will keep you posted on our progress. Shannon has supported every year and this is my first time helping spread the word with her, so I'm posting here personal page in the fight!

you can visit the web address:
http://web.alsa.org/site/TR/Walks/NorthCarolinaWalk?px=2665405&pg=personal&fr_id=6250


Thank you TBR!

 

World record hay ride!

 

Thanks to those who've donated so far... costs for caring for an ALS patient are around $200,000/yr so every little bit helps, even $5 donations are welcomed!

 

this guy is my cousin, by marriage.


please donate.


who here thinks they can match my donation?!?!?!?!?!?!?!