Living with ALS

Tottenville grandmother combats Lou Gehrig's disease with faith, family and her online support 'buddies'

Tuesday, September 04, 2007
By ANDREA BOYARSKY

STATEN ISLAND, N.Y. -- When Laura Grzeskowiak started slurring her speech at Easter dinner three years ago, her family joked that she had too much wine. But when Mrs. Grzeskowiak informed them she hadn't drank anything, they realized something was wrong.

In June 2004, Mrs. Grzeskowiak, a healthy, talkative woman, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's disease. A progressive disease, it attacks motor neurons, leading to muscle weakness, paralysis and death.


The Tottenville resident went for three medical opinions, hoping for another diagnosis. No one in her family had the disease and she didn't know much about it. Most cases of ALS are not hereditary and the reasons behind it are not completely understood.

"It has changed everything," Mrs. Grzeskowiak, 54, wrote on a piece of paper since she can no longer speak.

"I have had to retire, I can not travel like I used to, I need help with almost every little task, my home needs to be modified, but it has made me more grateful for faith, family and friends."

During a recent interview in her living room, Mrs. Grzeskowiak and her daughter, Holly Shaughnessy, explained about life with ALS. Despite its grim prognosis, they remain upbeat. To communicate, Mrs. Grzeskowiak used a dry erase board and a computer program that speaks what she types.

With the airy sounds of her ventilator in the background, they explained that following Mrs. Grzeskowiak's slurred speech, she had difficulty swallowing and her legs weakened, causing her to fall several times.

LIFE AS IT IS NOW

She had to retire from her event planning job and eventually her speech was completely lost, as was her ability to walk. She now relies on a feeding tube for nourishment, though she no longer has to struggle and choke when she eats.

Although there is one FDA-approved treatment for ALS, Mrs. Grzeskowiak chose not to use Rilutek because of its possible side effects, such as weakness, nausea, lung function decrease and a mild liver disorder.

Her family does everything for her from bathing to driving. They transformed their dining room into a bedroom and installed a ramp leading from the front of their house to the back yard. Mrs. Shaughnessy and her husband also moved in to help with her daily care.

"Having to ask for help for everything is the hardest thing," Mrs. Grzeskowiak wrote.


Although she's in a wheelchair with several tubes extending from her neck, Mrs. Grzeskowiak does not appear frail. For the interview she exudes the look of a determined and happy woman -- nails manicured and hair done. Mrs. Grzeskowiak smiles often and laughs.

"She's always been feisty and still is feisty," Mrs. Shaughnessy said. "She's an inspiration to all of us and everyone who sees her. It changes people's perspective on the disease. It doesn't have to be doom and gloom."

Mrs. Shaughnessy noted that they keep her mother's looks up to show that she's not giving up. "So much has changed, that we try to keep whatever we can normal," she added.

REASONS TO FIGHT

Mrs. Grzeskowiak reasons for not giving up are simple: Jake and Max, her two grandkids, and a third on the way. Her family is why she opted for a ventilator, a breathing device that is extending her life.

"We often say, we don't know how patients without a proper family support structure get through the disease," Mrs. Shaughnessy said. "It can be intense."

Mrs. Grzeskowiak's support also comes from a group of people she met on the Internet through the ALS and Muscular Dystrophy Associations. She and her "buddies" often chat online, sharing their experiences and offering advice. "My buddies and I pray for a cure soon," she wrote.

"They're a very good cheerleading squad," Mrs. Shaughnessy said. "When the person is down, they bring them up."

But eventually, Mrs. Grzeskowiak's family knows she'll no longer be able to type to her friends. They are hoping to get her a device called the "ERICA system," which will allow her to control the computer with her eyes.

They're also trying to help others with ALS, by participating in the annual ALS Walk with their team, "Laura's Legion of Hope." They raised more than $25,000 this year for ALS research.

"It's difficult, but not impossible," Mrs. Grzeskowiak wrote about living with ALS. "Faith, family and friends can carry you through it."

Andrea Boyarsky is a features reporter for the Advance. She may be reached at boyarsky@siadvance.com.

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