By Sasha Brown / Daily News Tribune Staff Writer
© Copyright of CNC and Herald Interactive Advertising Systems, Inc.
Wednesday, October 29, 2003

WALTHAM, MA -- For Scott Edelstein, his job coordinating special events to raise money for the Amyotrophic Lateral Sclerosis (ALS) Association Massachusetts Chapter is deeply personal.

The 22-year-old's mother, Joyce, has the condition, more commonly known as Lou Gehrig's disease.

The disease is a devastating illness that has left Joyce paralyzed -- unable to walk, talk, or breathe without a respirator. It attacks the motor neurons (nerve cells in the brain and spinal cord) that control the muscles for voluntary movement.

"This is a way for me to do something with ALS and help other people with the disease without emotionally breaking down," said Scott who, on Oct. 18, helped organize a walk for ALS.

The event drew more than 800 walkers, including a team organized by Scott Edelstein's sisters, Julie, 24, and Robyn, 28, called "Joyce's J-Walkers."

In addition to his job, Scott has also set up a Web site, www.helpjoycelive.com.

"We get hits from all over the world," said Scott.

According to the Web site for the ALS Association's Massachusetts chapter, 30,000 people in the United States are suffering from ALS. Of those, only 1 percent choose to go on a respirator. Joyce was one of them.

"She is a very strong woman," said her husband of 31 years, Michael, an optometrist whose practice, Bay State Eye, is located on Moody Street. Michael Edelstein cares for Joyce every minute he is not at the office.

"It's very hard for him," said Scott, who lives at home with his father and mother in Needham.

He tries to help his father as much as possible.

But Joyce cannot be alone, so the rest of the time, she must be cared for by home health aides, which cost about $70,000 a year.

"Joyce cannot be alone even for one minute," said Michael, who communicates with his wife by saying the alphabet and stopping on a letter based on her eye movement -- the only muscles in her body she can control are her eyes and her mouth, so she can still smile.

Last year, the family set up a fund to help them with the enormous expenses not covered by insurance. Since then, they have received $13,000 in donations from around the country.

They even received a package from George Shapiro, producer of Joyce's favorite show, "Seinfeld," filled with "Seinfeld" items.

But even with all the support, the Edelsteins are still running out of money.

"I have tried everything I know," said Michael, who said his life savings have dwindled down to very little. "It is a devastating disease, emotionally and financially."

He has been told he should sell his house.

"I politely said, 'That's out of the question,'" said Michael. "The house is all we have left. It is where we raised our children."

Those who wish to make a donation to help Joyce's family can send contributions to: The Joyce Edelstein Fund, c/o Needham Cooperative Bank, 1063 Great Plain Ave., Needham, MA 02492.