Needham Times
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By Amanda McGregor / Staff Writer
Wednesday, November 5, 2003

"Scott!" shrieked the home health aide around 2 p.m. on Monday.

Scott Edelstein, 22, bolted up from the couch and flew down the hall to his mother's bedside. There seemed to be a problem with Joyce Edelstein's ventilator. She was gasping for air. The seal at her tracheotomy did not seem to be holding.

Scott immediately called his father, Mike, who raced home from his optometry office in Waltham. Her condition worsened; growling noises came from the tracheotomy in her neck with each breath from the ventilator, and she went into tachycardia, a dangerously high blood pressure and heart rate. Mike, 56, who is his wife's primary caregiver, knew she needed the emergency room.

"I need an ambulance to transport my wife," he told the dispatcher at the Fire Department. "She's a 53-year-old woman with Lou Gehrig's disease. She is completely paralyzed and on a ventilator," he went on, with both firmness and fright in his voice, trying to prepare paramedics for a rare condition they might not have dealt with before.

Mike and the home health aide removed her from the ventilator, one of the many pieces of medical equipment cluttering the master bedroom turned hospice area, and were using oxygen bags to assist her breathing manually.

The ambulance came and the paramedics wheeled Joyce out of her bedroom, out the back door of their Richard Road home, across the lawn and into the ambulance. Her face was red and her mouth gaped open rhythmically in her body's attempt to gasp for the air that she cannot inhale. Her frightened eyes spoke volumes, as she had no choice but to trust those around her to assure she would be OK, but knew that she herself could do nothing. Her active mind is trapped in the paralyzed body that has betrayed her.

Joyce was rushed to Massachusetts General Hospital, with Mike following closely in his car.

After the ambulance doors closed, Scott walked back into the house and tried to shake off the jarring episode, as he sat back down on the couch to continue his interview with the Needham Times.

He sighed at the constant uncertainty and devastation that has gnawed away at the family since his mother's diagnosis three years ago with Amyotrophic Lateral Sclerosis, known as Lou Gehrig's disease, a neurological disorder that leads to muscle atrophy, paralysis and eventual death due to respiratory failure within two to five years of diagnosis.

"I have seen things in the last three years that I would never have believed before, and I have learned never to take a single moment in life for granted," said Scott. "It has been an absolute nightmare, to see my mom going from being completely healthy to losing everything that she has.

"It is important to remember that she is not just what you see now, but to remember who she still is inside, and the type of woman that she was. She loved to tell jokes; she loved to give; and she always wanted the best for us. She did everything for her children."

The disease has rocked Mike and Joyce Edelstein's world, and the world of their three children, both emotionally and financially. During his senior year of college last year at UMass-Amherst, Scott came to a crossroads and was faced with a decision that he said burdened him greatly.

"I had to decide, when I graduated from college, should I dedicate my life to my mom's care? Should I move home and help my dad full time?" he recalled. "Or should I help as much as I can, but also live my life?"

Scott presented his dilemma to his family communications class at UMass, and his classmates helped him formulate a solution, which was to look for a job that would incorporate work for the fight against ALS. By the end of June, just a month after his graduation, Scott was the special events coordinator for the ALS Association Massachusetts Chapter, located in Dedham.

"It has been great because I feel like I'm using my knowledge and experience with the disease," said Scott, who is the youngest of the Edelsteins' three children. "I am the special events coordinator, but a lot of my work goes beyond that, and I am there to answer questions for people because my family is going through this."

As families struggle with the multifaceted difficulties of ALS, there is not only the devastation of the disease itself, but also of the costs. Joyce's care costs are about $70,000 annually, and home health care is not covered by insurance. Scott said there is a strong ALS support network, and stories are often exchanged about the financial crises incurred as a result of the disease. He also said that his friendships have been key in dealing with his mother's disease.

"You have to depend on friends. My whole support system was my mom, my parents, my family," said Scott. "When that crumbles away, you have got to have people to turn to. You need people to listen. My friends have been incredible."

A portion of the Massachusetts chapter's proceeds go to the national ALS Association, which funds research across the country, while a percentage of the money raised by the local chapter goes toward patient services, the equipment loan program, and advocacy and support groups, according to Scott.

His first big assignment came quickly when he was charged with organizing the Walk to D'Feet ALS fund-raiser in Wakefield on Oct. 18, in which a team called Joyce's J-Walkers walked in honor of his mother and raised thousands of dollars for the association's Mass. chapter.

"I worked constantly for three months to organize the walk," said Scott, who emanates energy and enthusiasm. "And the volunteers were amazing."

Part of Scott's mission, along with many others crusading against ALS, includes lobbying the state and federal government to create an ALS registry that would track all incidences of the disease and potentially aid in research that might link certain environmental causes and/or geographic areas to the disease.

Research foundations around the world are looking for the cure that would halt the motor-neuron death caused by ALS. For those still alive but already ravaged by the disease, they would need an additional cure to restore the destroyed neurons, possibly through stem cell therapy or gene therapy.

"Whenever any positive research comes out, I tell my mother. She wants to beat this disease," Scott said.

The Mass. chapter's next big fund-raiser will be the Positive Spin for ALS bike ride on June 13 in Wayland, on which Scott is already toiling away. Anything he can do to fight ALS is a help not only to his family, he hopes, but to those 30,000 other people in the United States suffering from the disease.

"I see the burden this places on my dad and I worry," said Scott, who is now living at home with his mother and father. His older sisters, Robyn and Julie, no longer live at home. "My dad is holding this whole family together, but the physical, emotional and financial burden of this whole thing is just dragging him down, and my biggest fear is that something would happen to him, and the family would just fall apart."

Scott loves reading to his mother, and Joyce is often receiving letters and e-mails from around the country, even from around the world, with words of support, or with stories from those who have also been affected by the disease and wish to share their experiences, trials and tribulations.

"I like to read to my mom and tell her stories about other people with ALS. I know she feels left behind," said Scott. "Three years ago she was fine, and now, everyone around her is still fine but she is not. It is helpful to hear about people going through the same thing, because they have had everything taken away from them too, so she feels like she is not alone."

For him, the toughest aspect of his mother's illness has been the loss of her companionship.

"The hardest thing is not having her voice anymore, not having her to talk to," said Scott. "It is hard to explain how close we were. She was my best friend. I could ask her anything, and I told her everything. I could depend on her for anything."

The family's house on Richard Road, where the couple settled more than 28 years ago, is filled with the memories of dinners, birthday parties, laughter and quarrels.

"Sometimes it is so sad that when I get home from work I just want to lock myself in my room," said Scott. "I remember her coming into my room at night. I remember her doing laundry. I remember her walking through the front door and up the stairs. I remember the notes she wrote us and put in our lunches every day.

"It feels like it was so recently that I can remember her unloading groceries ... or saying her coined phrases like, 'Whoa Nellie,' when we would be having a silly argument."

Joyce was diagnosed with ALS on July 26, 2000. Within months, she was using a walker, which then gave way to a wheelchair. Her speech became slurred, and by October 2001, it was getting almost incomprehensible.

"I used to talk to her many times a day," said Scott, who entered his sophomore year of college shortly after his mother's diagnosis. "Then I was getting calls once a month. She was getting harder and harder to understand."

In December 2001, Joyce caught pneumonia for the first time, and has been on a ventilator ever since.

"It was in the middle of my junior year [of college] when she got pneumonia, and I will never forget going to her hospital room and seeing the tubes in her nose and mouth," said Scott. "I'll never forget the look on her face when I first came in. She tried to talk to me and couldn't, and I just dropped to the ground crying and apologizing for anything mean I had even done to her.

"In one-and-a-half years, I had seen everything taken away from her."

Scott Edelstein said it is important not to dwell in the misery of the disease, and his job helps him to focus his energy positively.

"My mom is the sweetest person and she does not deserve this," said Scott. "There is no reason for this to happen, but it did. We know she is just a woman with a disease who can't move, but we know she is just like everyone else on the inside, but locked in, unable to communicate with the outside world."

Joyce's face still lights up whenever her husband or children enter her room, and she alertly communicates with them through questions to which she responds yes or no depending on her eye movements, which is the only dwindling movement she has left, along with slight head movement and her smile. It becomes obvious to anyone who is witness, that her love for her family keeps her going, as does her hope for a cure.

After she arrived as Mass. General on Monday afternoon, Joyce was diagnosed with another bout of pneumonia, approximately her fifth case of it in two years, according to Mike Edelstein. She will likely be in the hospital for one to two weeks and is receiving treatment intravenously.

On Monday, the balloon that anchors her tracheotomy inside her throat had broken, which caused her ventilator support to fail, but was unrelated to the pneumonia.

"Thank God the Needham paramedics arranged for the Newton paramedics to come," because both Needham ambulances were out on call at the time of the crisis on Monday, said Mike. "They were great. They are always great."

She was still in the hospital undergoing treatment when the Needham Times went to press on Wednesday.

"She is doing OK, but she is in distress," said Mike, who visits her daily at Mass. General, where he has spent countless hours in the past three years. "She has been crying a lot, but mainly because she has a fever and feels lousy, just like you or I would.

"But she wants to keep going. She is a very determined woman. ... Even in the hospital, she was smiling."

Anyone wishing to aid in Joyce Edelstein's care may make contributions to:

The Joyce Edelstein Fund
c/o The Needham Cooperative Bank
1063 Great Plain Ave.
Needham, MA 02494

For more information, visit www.HelpJoyceLive.com