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He won’t fight alone

Monday, November 23, 2015

Bobby Forster is shown with his wife, Casey, in their Newport home. The couple was married in June 2014, six months before Bobby was diagnosed with amyotrophic lateral sclerosis.

NEWPORT, R.I. — Bobby Forster is a 2011 graduate of Salve Regina University who helped pay his way through college pedaling pedicabs throughout the city. That activity launched a career that now has been cut short by a terrible disease.

Although he earned his degree in social work, he took on a job after graduation managing a pedicab company in New Orleans under a two-year contract because he liked the field. Missing New England, he returned to the city when the contract was up and got a job here as an area sales director for a pedicab manufacturing company based in Montana.

Always active, Forster, 26, was playing volleyball with friends in June 2014 when he noticed the ball kept going off to the right when he hit it.

“About a week later, I noticed my right arm had gotten really weak,” he said Monday night. “The diagnosis that I have ALS was confirmed on Dec. 23, 2014, but I am still optimistic.”

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost.

“For me, it was first the arms, then the legs and now the speech,” Forster said. “It’s meant big changes in my life, but it doesn’t mean I don’t want to keep having one.”

Although he has health insurance, many of the medical costs associated with the care of ALS patients are not covered by health insurance.

Forster has had contact with Ronald G. Hoffman, founder and executive director of Compassionate Care ALS, a nonprofit organization based in West Falmouth, Mass., and discussed the disease with him.

“I can’t say enough good things about him,” Forster said.

The organization loans at no cost multiple medical devices and all kinds of non-medical equipment, such as specialized chairs, body lifts and mattresses, to ease the lives of people with ALS. CCALS has provided Forster with the wheelchair he is in now and some other equipment, and installed a ramp to help him with access to his Thames Street home.

Still, the remaining costs are prohibitive.

People in the field have told Forster that it costs $200,000 to $250,000 a year to cover the needs of ALS patients.

“The insurance doesn’t pay to have caretakers come to your home, besides the co-payments and other expenses,” Forster said. “It’s all out of pocket. Luckily, I have incredible friends who help out a lot.”

Friends have arranged for two fundraisers being held Wednesday. The day begins with a “Brunch for Bobby,” at Corner Cafe, 110 Broadway, from 7 a.m.-2:30 p.m. All gratuities earned by the servers and a percentage of the sales will go toward his expenses. “Full Moon Yoga” will take place at the Island Moving Co. studio, 3 Charles St., from 5:30 p.m.-7:30 p.m., with all donations going toward his fight against ALS.

“I’m looking forward to it, seeing family, friends and people I haven’t seen in a long time,” Forster said.

His number one supporter and caregiver is his wife, Casey.

“She’s been absolutely amazing, staying with me and making huge, huge sacrifices,” Forster said. “I don’t know where I’d be without her.”

They have been together for a couple of years and were married in June. His wife works as a full-time architect in Foxboro, Mass., so the work, commute and caregiving have not been easy, Forster said.

“It’s difficult,” Casey acknowledged as she came home from work Monday night close to 7 and gave her husband a kiss.

“I work 40 hours a week at my job and at night I’m his caretaker,” she said. “That makes it an 80-hour work week, but for him, it’s worth it.”

“I have always been very active and knowing that I am going to lose the ability to do a lot of the things that I love is really sad,” Bobby Forster wrote on his website,, earlier this year. People can make donations on the website as well.

“I’m trying to keep busy,” he said Monday. “I got out sailing a bunch this summer.”

Some of his friends were at the Forsters’ home Monday night.

Sam Leuschner of Newport has a 30-foot sailboat here that he lives on in the summer and sails with Forster and other friends.

“We did Bobby’s bachelor party in late May on the boat,” Leuschner said.

Thirteen guys sailed on two boats out to Block Island, where they met some other friends.

“We try to make every day as good as possible,” Leuschner said. “We get out of the house as much as possible and look for adventures. We still plan to go sailing next summer.”

Drew Croan owns Pedi-Power Pedicabs of Newport, where Forster previously worked, and stays close to him.

“We just go day-to-day,” Croan said. “We spend time together and just live. We want to stay active and stay strong together.”

Bobby Forster and his wife, Casey, share a laugh in their Newport home.

Ashley Forgione, a graduate student in mental health counseling at Salve Regina University, is part of Forster’s large circle of friends.

She is originally from North Reading, Mass., but met Forster while she was living in New Orleans.

“Bob told me Newport is a good place to go for the summer,” she said. “I’m still here.”

Forster was having trouble swallowing, so a feeding tube was inserted into his stomach about two months ago. Placed too close to his rib cage, it was very painful. A new feeding tube was inserted at a better location almost four weeks ago.

“I wanted to do it ahead of time, to delay having a tracheotomy,” he said.

Forster writes about the stages of dealing with the disease on his website.

“My friend and fellow ALS battler, Steve Saling, once said, ‘Until medicine proves otherwise, technology is the cure,’” he wrote. “That is something I have really taken to heart. Since receiving my diagnosis I have become determined to take the technology further than anyone ever has before. I am currently working to develop exoskeleton prosthetics.”

Forster said Monday night he is working with University of Rhode Island graduate students on prosthetics that are activated by eyeball motion and the muscles around the eyeballs. Those are the movements that remain to advanced ALS patients.

Forster loved surfing, sailing, spearfishing and climbing mountains before ALS restricted him in so many ways.

He tries to stay as close as possible to those activities in spite of ALS. And he likes to go out with his dog, Zulu, who is a mixture of husky, German shepherd and pit bull and loves to chase balls.

“He’s a rescue dog from New Orleans,” Forster said. “He’s the most athletic dog I’ve ever seen.”

Forster said he remains optimistic about returning to athletics, because he believes medical researchers will develop a cure for the degenerative disease.

“I’m hopeful I’ll be able to do everything I was doing before I got the disease,” he said.