Stroke/head injury survivors, with family members and friends, join Department of Communication Disorders and Sciences students and staff who conduct support meetings for a group photograph at the celebration commemorating the 20th anniversary of the support program.

A milestone helping stroke survivors and their families adapt to new lives has been achieved at the State University of New York at Fredonia.

The Henry C. Youngerman Center for Communication Disorders in the Department of Communication Disorders and Sciences (CDS) has offered support group meetings for stroke survivors and their family members for the last 20 years.

Clinic Director Julie Williams established the stroke support group program in 2004 with assistance from former clinic director Michele Notte. It was expanded and renamed the Stroke/Head Injury Support Group in 2008 to include head injury survivors, as that population was not being served in the area.

“There are many individuals out in the community who have suffered a stroke or head injury and know someone who has, however, oftentimes they are unaware of the services that are available in their community to assist themselves or their loved ones,” Ms. Williams explained.

“The group was designed to provide social support, communication strategies and educational information to stroke survivors and their family members,” Williams added. Graduate students in the Speech-Language Pathology program serve as clinicians and other professionals in the community also participate in group sessions. Dr. Melanie Zimmer, the department’s staff audiologist, gave a recent presentation.

“Our group has grown over the past 20 years and lasting friendships and relationships have been established between survivors, their family members and friends,” Williams noted.

Over the last two decades, about 100 participants (survivors, family members and friends) have attended the support group and 120 CDS graduate students have assisted Williams with the support group sessions. Over 30 professions from the campus and community have given informative presentations for the participants.

More than 20 people – stroke/head injury survivors and their family members and friends, along with CDS staff and students – commemorated the program’s anniversary on May 6. A presentation given by graduate students focused on educating survivors, family members and other participants on the effects of stress on communication and cognition after a stroke or traumatic brain injury (TBI).

The anniversary celebration marked the last support group meeting of the spring semester.

Support meetings are devoted to group conversations, group activities and presentations. Graduate students earn clinic hours by working with clients and family members while gaining valuable experience in the treatment process.

“We come together to do stroke and traumatic brain injury education and counseling. A lot of our presentations are about a particular topic related to stroke- or post-TBI functioning or mental health,” explained Meg Burnard, a student from Rochester.

“I really enjoy talking to people who are post-stroke or post-TBI; they have a lot of different experiences,” Burnard said. “They are all living a life that is significantly different than it was before, and they are making changes, getting up every day, and seeing progress (they are making) is really cool to see.”

Graduate students interact with clients of all ages who have completely different stories or backgrounds, said Caitlyn Ferguson, a student from Wellsville. “They’ve taught me so much more than I’ve learned in classes.”

Clients can experience language or speech deficits – not being able to retrieve a specific word they want to use or to speak in complete sentences – as well as social inactivity.

How have area residents who have survived a stroke benefited by attending support groups meetings?

“I learned that I am not alone,” said Linda Will.

“My family tries to understand what I’ve been through, but until you actually live it, you don’t know what people are going through. Going to support groups is different. We each understand what the others have gone through,” Will explained. “Our language is a little bit different because of what we’ve gone through,” she said.

“It’s kind of refreshing that people understand what we’re going through,” she added. With the exception of the COVID pandemic, Will has regularly attended support meetings for the last 12 years.

Attending support meetings has been very beneficial for Janelle Hartloff and her husband, Duane. “It’s helpful to have people who understand aphasia,” she explained, a condition in which a stroke survivor cannot communicate what they want to say. “He has knowledge that he can’t express, can’t get the words out,” Hartloff said.

“For us to be there, among people who understand and can empathize with our situation, has meant a lot to us,” she added.

Group meetings always include a fun activity that helps with memory, such as word finding, and provide educational materials that explain different types of impairments that somebody who suffered a stroke or traumatic brain injury can have, said a mother whose son suffered a brain injury in a motor vehicle accident.

“It gives them an opportunity to be around other people who are suffering with the same conditions,” she explained. “A lot of times in regular society, people tend to shun you and not communicate with you, and friendships go by the wayside because the person is not the same person they were before they suffered a brain injury.” she said.

“It’s nice to interact with people who understand,” she added.

Feedback from those attending group meetings is overwhelmingly positive. “People who have come here talk about how much it’s helped them,” Barnard said. “They keep returning and are happy to be here.”