'A lot of help' keeps him at home

By Julia Spitz/Daily News staff
The MetroWest Daily News
Posted Feb 04, 2009 @ 10:34 PM

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Darryl Goss realized there was a problem when he could no longer taste the wine and his words began to slur together.

"Sometimes it sounded like he had had a few drinks," Robin Dorogusker recalled, but she knew her longtime boyfriend's problem wasn't alcohol.

Liquor provided his livelihood, and a measure of celebrity as the former head brewer at Cambridge Brewing Company and a connoisseur who taught wine classes, but "I never saw him inebriated."

Instead, his impairments were signs of ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. The diagnosis came three years ago, and, "the prognosis is usually three to five years," said Dorogusker.

"Your first thing," when you hear the news, she said, is "there must be a drug, there must be a cure, there must be a doctor who can help me." There are ways to manage some symptoms, but "it's a very personal struggle" without definitive protocols.

"For someone like Darryl, even if there is a cure, it's probably too late," she said. But there is inspiration, they said, thanks to the ALS Therapy Development Institute, a Cambridge-based nonprofit biotechnology company whose founder's brother had the disease. And they hope their participation in ALS TDI fundraisers, programs and focus groups "can help someone in the future."

"I hope to help other people who get this," Goss said.

Just as others have helped him stay in the Framingham home where he's lived since he was 6.

"It was really important to Darryl to stay in this house," Dorogusker said Tuesday afternoon, as they sat in the living room narrowed by the newly installed wheelchair lift.

Renovations, which also included widening entries, removing doors and installing a shower that can accommodate a wheelchair, were completed a few days ago, thanks to a number of area businesses. Elaine Construction of Newton, Pavilion Floors, Regal Paining, O'Mahoney Electric, Fazio Inc., Marani Construction, Dan-Cel, Boston Steel Fabricators, AFCO Lift and Equipment Co., Sterling Movers, R&R Plumbing Supply, Compassionate Care, Compass Facility Services and Symmes, Maini & McKee Associates were among those who donated time and services.

"We're lucky to have friends in the business," said Dorogusker, a construction project manager.

"I can't say enough to thank the friends and contractors (who worked on) this project. People were so generous with their time and their resources." Plumbers, cleaners, movers, electricians, "everybody helped out. Everyone has been willing to step up, even in this economy."

A fundraiser last summer at a Cambridge bar helped pay for parts of the project, and also provided a memorable time "people came from all over the country to see (Goss)."

"I'm thankful for everyone," Goss said, through Dorogusker, who can usually help his words be understood when she watches his face as he speaks.

"We're thankful for your friends helping you get through the day," she said. "There are people who are here every day."

With ALS, "every day you do less and less. You become more dependent on others," said Goss.

In an e-mail yesterday, he said he wanted to acknowledge some of those "who do a lot to support me at home," including "Michele Schecter, a sixth-grade teacher at Fuller Middle School; Keith Felt and Lisa Forsberg; Steve Graf and Arnie Brigham, friends since high school (Framingham North) who built my ramp soon after a fall on the old doorstep; and, of course, Robin, family and neighbors."

Goss, who turned 51 last week, wasn't able to watch the renovation project take shape. He went to Dorogusker's house in Boxford during construction, and the return home was bittersweet, she said. He was "amazed at the strength (he'd) lost in three weeks," but "amazed at what (he) gained" in terms of being able to get around the house.

The disease has few upsides, but "ALS has forced him to use technology," said Dorogusker. The old-school guy who preferred vinyl records to an iPod now wears a silver dot on his forehead that acts as a computer mouse.

"We can't talk on the phone, but we can e-mail," she said.

As for Dorogusker, "if this disease hadn't hit, we had been talking about other life plans."

But "everybody has had some tragedy, has been dealt a hand of cards they didn't choose. I'm not the only person struggling through problems."

And even the biggest problems seem smaller if you have one thing.

"A lot of help" from friends, Goss said.



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