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This Staten Island support group helps those with a rare language disorder

April 3, 2024

STATEN ISLAND, N.Y. — Richmond University Medical Center (RUMC) recently introduced a support group for those with aphasia, giving people affected by the rare language disorder an opportunity to practice social skills in a comfortable environment, building confidence along the way.

Aphasia is a medical condition that affects an individual’s speech, writing and understanding of written and verbal language, yet does not affect their intellect.

It was brought to the forefront of Americans’ consciousness in 2022, when “Die Hard” star Bruce Willis was diagnosed with itand stepped away from acting. It was later announced that Willis actually had a form of dementia.

Symptoms of aphasia include difficulty speaking, trouble understanding speech, difficulty with word recall and problems with reading and writing.

More than 2 million Americans are affected by aphasia, according to the Mayo Clinic.

Although patients with aphasia have long been treated at the hospital’s outpatient rehabilitation clinic in one-on-one therapy sessions with speech pathologists, the new RUMC support group offers a twist — a comfortable, relaxed setting where people socialize with others with the same disorder, participate in group activities and play games.

The group was the brainchild of Kristine Delgado, administrative director of rehabilitation at RUMC.

Depending on the context of the group, the activities vary. Participants might have an open discussion about a topic they choose, or they might play a game that encourages speaking out loud. Often, they practice social situations with each other or the therapist, such as basic conversation, ordering food in a restaurant, and other situations which often cause anxiety for the patients.

“A big part of it is the support of having other people who are going through it, so you don’t feel like you’re the only person going through this,’’ Delgado said.

The meetings are held on Fridays at 10 a.m. in the Residence Building, behind the main hospital at 355 Bard Ave. in West Brighton.

They are open to anyone with aphasia, regardless of where they are being treated.

And, though the meetings are being held in the same clinic where outpatient rehabilitation currently takes place, the vibe is much different, Delgado said.

Because those affected by aphasia have trouble communicating, even close family members can have difficulty knowing how to react and encourage, so they’re also invited to attend the meetings.

“At home, their family members don’t always know how to engage with them,’’ she said, noting that oftentimes people try to finish sentences for those with aphasia, or interrupt them. “It’s actually very frustrating to the individual. It can be insulting to them.”

Social situations with strangers are particularly stressful, even embarrassing, for patients, Delgado said, because they have difficulty forming words and getting their point across.

“When they go out into social situations or in public, the patient feels very anxious because of the way the speak, and they usually end up avoiding them,’’ Delgado said. “A lot of people, unfortunately, think it has an impact on cognition, which it doesn’t.”

Aphasia can affect anyone at any age. With more than 200,000 cases diagnosed annually in the United States, it can be the result of a traumatic brain injury, a stroke, or a tumor or infection. At other times, it develops gradually, Delgado said. This is called primary progressive aphasia, and it often mimics dementia, she added. But it is quite different.

The meetings are conducted by two RUMC speech-language pathologists, Alessandra DelloRusso and Caitlyn Savino, who report receiving great reviews from participants so far.

After only six weeks of meetings, family members have reported a significant increase in their loved ones’ engagement, the RUMC pathologists reported.

“The kids have Grandpa back,” one said.

Those participating in the meetings value the support aspect.

“Since my diagnosis, I have felt more alone than ever in my life,’’ one aphasia patient said. “This group is giving me the confidence to get back out in the world.”

The speech-language pathologists reported they’ve heard many say, upon arriving on Friday morning, that the group is the highlight of their entire week.

“The group is so important, because it allows them to meet other people who are having similar experiences and practice what they learn in their session with people in a safe environment,’’ Delgado said. “They don’t have to feel nervous about making mistakes, because those other people get it.”

Delgado said the support group has been long in the planning stages and she’s happy it’s come to fruition.

“I’m really excited about it,’’ she said. “I feel good that people are coming, they’re benefitting, they’re really enjoying it. I’m really proud of my staff, too, for really carrying it out, for choosing the activities every week and really getting it done.”

Registration for the meetings is required. Those interested should call the RUMC Speech Department at 718-818-2245.