Joyce Edelstein has a strong spirit trapped in a body that betrays her. Edelstein, 53, suffers from Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's disease, a neurological disorder that leads to muscle atrophy, paralysis and eventual death due to respiratory failure.

Joyce and her husband, Michael, 55, live in their Richard Road home in Needham, the same home in which they have lived 28 years, raised their three children and shared so much together. Now it is the home where Joyce requires around-the-clock intensive medical care since ALS has rendered her speechless and paralyzed, aside from blinking, slight head movements and her radiant smile.

A hospital bed, ventilator, coughing machine, oxygen tank, feeding tube and other medical supplies clutter the Edelsteins' bedroom. They replace the king-sized bed the couple used to share. A small twin bed, tucked next to Joyce's, is where Michael now spends his nights, vigilantly caring for his wife, always keeping an ear perked for breathing abnormalities or medical equipment alarms.

It all began about two-and-half-years ago when Joyce found herself tripping inexplicably. She tripped when she was coming up from the basement with a basket of laundry, then at a theater in Boston, and then in a Barnes and Noble parking lot.

At first she chalked it up to a bad pair of shoes, but after a couple of months she went to a neurologist, who then routed her to an orthopedist, but to no avail.

The reality came crashing down one night while Joyce was out playing mah jongg with her friends, and Michael was researching her symptoms on the Internet, as he had been doing to try to find what might be ailing her. That is when he came across the description of ALS.

"I became frozen in my seat when I read that, and I got hysterical," said Michael, who has worked in Waltham for 29 years. "When she came home, I told her, 'Joyce, I think you have ALS.' "

She was officially diagnosed with the disease on July 26, 2000. Within months, she was using a walker, which then gave way to a wheelchair. She couldn't grip with her hands, so she took measures like drinking with a straw, until she became too weak to suck on a straw.

Her speech was slurred, and by October 2001, it was getting almost incomprehensible. It was soon gone. In December 2001 she caught pneumonia for the first time, and made the decision to go on a ventilator, knowing she might never get off it. She has been on the ventilator since.

Within a span of just two years, Joyce's life has changed from day to night. And though she is confined to her bed, without movement, her frame of mind is positive.

"Joyce is the strongest person mentally you'll ever meet in your life," said Michael. "She doesn't want to die. She wants to live.

"She has been determined not to let it get to her mentally," he said. "She's determined to survive until a cure is found."

Her friends concur.

"She's got an inner strength in there that has helped to pull her through all this time," said Janis Sklar, a neighbor and friend of the Edelsteins for nearly 23 years. She and Joyce met while they were both pregnant with their sons. "Her mind is free; if only we could get her body free."

Joyce's sense of humor is evident. She still delights in hearing funny stories from Michael and her friends, and well as soaking up episodes of her favorite television show, "Seinfeld."

"Uh oh, she's giving me the look," Michael joked Monday evening after forgetting to change the TV channel to "Seinfeld" at 7:30. Joyce grinned back at him. Her eyes followed him intently as he moved about their bedroom.

The bond between the couple is palpable. Their eyes lock in an intense gaze that allows them a small world of communication with each other now that words are no longer part of Joyce's physical existence.

Michael has also developed a way for Joyce to express herself by listing off the alphabet to her, and she blinks when he gets to the letter she wants to use. This way, she can spell things out to him, be it a request for him to adjust her head on the pillow, or to relay a message over the telephone to their son, a senior at UMass-Amherst, to take Advil for his flu.

"What amazes me is that she can still smile," said Sklar. "When her kids come into the room, she's beaming."

The Edelsteins have learned to live with uncertainty, although they don't have much of a choice. Two weekends ago, Joyce had to be rushed by ambulance to the hospital twice for complications - first when her tracheal tube came loose, and the second time when something went awry with her ventilator.

"I had a policeman and seven paramedics in my bedroom, and there we were carrying her out, ventilator and all, in the snow," said Michael.

A disease such as ALS takes its toll on family and friends as they watch their loved ones suffer.

"It's tormenting to see your partner go through this," said Michael. "It's emotionally tormenting."

Initially, Michael didn't know what to do.

"At first, I would sit in my car and scream the whole way home from Mass. General," he said. "I would cry before the staff (at my optometry office) came in in the morning."

Joyce's care has since become too intensive for Michael to stop and think about it.

"Now, I'm so busy I have no time. I don't have time for the emotions. There's no time to wallow in the emotions," said Michael. "That's probably what saves me from thinking, 'This can't be happening, I can't do this.' "

It has been difficult for their three children, who are in their 20s, to deal with their mother's disease, said Michael and other family friends.

"They get very depressed when they're home, and they're glad not to be living at home," Michael said. "It's obviously extremely upsetting for them."

Michael, originally from Lawrence, met Joyce, who grew up in Brookline, when they were both working summer jobs at Jordan Marsh in the late 1960s. They attended Boston University together, dated for five years, and have been married 30 more years since then.

"She's a very strong woman. She just goes," said Michael.

The other side: the cost

The burden of care that has fallen upon Michael's shoulders is a mighty one. Both Joyce and Michael are only children, so they don't have a family network to rely upon.

"I have to work so hard at the office and at home. I don't sit down for two minutes," he said.

When showering, Michael has to bring a baby monitor into the bathroom with him in case the alarm on one of Joyce's machines goes off and she needs medical attention. She must frequently be detached from her ventilator and hooked up to the "cough machine," in order to expel the mucus that her lungs are too weak to discharge naturally. Joyce needs regular injections of anti-coagulants, since blood clots are a danger to her bed-ridden body.

There are nights Michael has been awakened 14 times to tend to his wife's care.

"Just to see her so debilitated is horrible," said Sklar's husband, Marty, who also helps care for Joyce. "But the other problem is the stress it puts on the family, especially Mike. For the last solid year or so, his full-time effort, just to see him under such stress, the physical stress, the tension, the emotional and financial stress. We've told him we worry."

Currently, Joyce's care costs to the family are about $70,000 annually. Three home health aides come to the house on weekdays in rotations, to cover the time while Michael's at work at his optometry practice. Home health care, which insurance does not cover, alone comprises over $50,000 of that annual cost.

"My biggest problem, beyond the horrible tragedy, is that I'm running out of money. I need somebody to help me," said Michael. "The key thing is that there's no kind of financial help."

Michael owns Bay State Eye Associates on Moody Street.

"I'm out there in a little practice, slugging it out against Lens Crafters and those big chains," said Michael. "People think, 'Oh, a doctor! He must be rich.' But that's not the case."

At this point, the Edelsteins have burned through almost all of their savings.

"It's absolutely surprising how he, as a middle-class individual with a moderately decent income and insurance, falls through the cracks," said Marty Sklar. "You would think there would be a sliding scale (for insurance) depending on one's needs.

"Anybody who has a catastrophic illness should be able to get reasonable service. You would think her daytime care would be covered."

In the beginning, friends would often take turns going over to the house and spending time with Joyce, but now her medical demands run beyond their skills, and she needs constant medical supervision.

The house is packed with supplies required for her care: boxes upon boxes of feeding tubes, the 12 prescription items Joyce takes, respiratory supplies, syringes, latex gloves, diapers, urine bags, toilet supplies, and the list goes on.

"My goal is to keep Joyce in as good condition as we can, until they find a cure," said Michael.

Friends say the Edelsteins don't lose hope.

"It's not a 'what if?' They talk that there will be a cure," said Carol Rosenstock, a friend of the Edelsteins who has known Joyce since they went to high school together in Brookline.

There is no cure or significant treatment to date for ALS, a mysterious disease. About 30,000 people in the United States are afflicted, and though ALS kills some people within five years, its victims have been known to live 10 or more years with the disease. A local foundation - the Newton-based ALS Therapy Development Foundation - is researching hard for a cure.

"What I find most scary is the quickness, and how in the blink of an eye, your whole life can change. Not just your life, but the lives of your family and friends," said Rosenstock. "In the blink of an eye, you realize how precious life is."

Anyone wishing to aid in Joyce Edelstein's care can make contributions to: The Joyce Edelstein Fund, c/o The Needham Cooperative Bank, 1063 Great Plain Ave., Needham, MA 02492