Defeating Lou Gehrig's disease a team effort -
[Cached Version]
Published on: 8/11/2004
Last Visited: 4/1/2008
Edelstein's son, Scott, 23, is also fighting the battle for ALS patients as a special events coordinator for the ALS Association Massachusetts Chapter.
After Scott Edelstein graduated from UMass-Amherst in 2003, he knew he had to enlist himself in the fight against the disease that will eventually take his mother's life.
"I can't think of anything else worse than ALS.When people are being evaluated for ALS, they'd rather have AIDS or a brain tumor."
From his parents' living room on Richard Road, Edelstein recounted the quick demise of his mother from the horrific disease that has no cure.
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Scott said he'll ask yes or no questions, for which his mother will look at the television to signal yes or no.
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"Ten years ago, the Schillings met an ALS patient," said Scott Edelstein, talking about the Red Sox ace pitcher."They saw it was the most dehabilitating disease and were so shocked to see what it does to someone."
Edelstein said the Schillings have been working with the ALS Association's Massachusetts chapter, which raises money for research, patient services such as providing augmentative speech equipment, wheelchairs and support services for those diagnosed with ALS.
The ace pitcher has also created Curt's Pitch for ALS and accepts donations at www.curtspitchforals.org.Edelstein said donors can receive incentives depending upon how much money they give.
If a person donates $200 or more, he/she will receive an invitation to a private reception with Schilling on Nov. 3 which Edelstein is organizing.
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Recently, Edelstein got to sit up in luxury box with the Schilling family during a Sox game and afterward got to go on the field and meet some players.Admittedly, Edelstein is not a big baseball fan, and Shonda's father needed to tell him who all the players were.
"Shonda is very sympathetic and really understands that this is an unfair disease that strikes at random.The Schillings are great because they are using their celebrity status to do good."
Edelstein added that he relishes the opportunity to work with the Schillings in such a close way, as he's been to their house and played with their children and dogs.
Events shaping up for fall
Edelstein is also working on The Walk D'Feet ALS, two fund-raising walks taking place on Sept. 12 and Oct. 16.The former is taking place in Shrewsbury while the latter, being organized by Edelstein, is taking place in Wakefield.
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"He's right here when he comes home from work to take care of my mom," said Scott."He gets up at all times of the night for ventilator alerts."
Scott added that his father, an optometrist, pays an additional $70,000 a year after health insurance.
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Scott Edelstein recalled one of the last times he spoke with his mother.
"Just after she was diagnosed, we're sitting here with her and her parents.And I knew that that would be one of the last times that I would get to talk with all of them together," he said.
"I asked her, 'What if it gets worse?' She said it wouldn't," said Edelstein.
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Edelstein said he often has lain in bed and imagined what it's like to have ALS.
"There's no treatment.No cure.No nothing for it."
He added that as a part of his job he often meets newly diagnosed ALS patients.
"What can you say to somebody?"he said.
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Scott Edelstein added that he's happy his mother is still choosing the ventilator.
"She doesn't want to go off the ventilator," he said.
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