Shilpa Shamapant moves a client’s mouth into the proper position. Together, they sound out the word, “Mom.” It will be the word he will use to address his wife because her name is too difficult to say right now. Shamapant writes out the word for her client to see and helps him say “Mom” again.
There is frustration written all over his face, but not on Shamapant’s. Again she moves his mouth into the proper position and says the word with him. Then she has him try it without her. Sounds come out, but nothing like, “Mom.” Shamapant does not give up. She knows it is in there because he had it before.
This is only his second week at Austin Speech Labs, a nonprofit organization that provides free or low-cost intensive speech therapy to people who have had strokes.
In another room, a small group of stroke survivors is working with student volunteers. They are each trying to read and say the large-print words a volunteer holds up.
Down the hall, a student volunteer is working with a client from Houston over Skype. In another room, caregivers talk to one another as their loved ones receive speech therapy.
Austin Speech Labs was started in 2008 by Shamapant and co-founder and fellow speech pathologist Shelley Adair when they both worked at St. David’s Rehabilitation Hospital.
“Speech is what makes you and me human,” Shamapant says. “That’s what differentiates us from other organisms in the universe.”
As therapists, they faced a dilemma. They would work with clients who had just had strokes for an hour a day, up to three days a week, until their insurance ran out or deemed that they were no longer making sufficient progress. Often, that was six months to a year after the stroke. And yet the clients still were not able to communicate sufficiently to lead an independent life.
“An hour a day, three days a week — that’s the system,” Shamapant says.
After insurance ran out, clients still wanted to do the work and improve, but Adair and Shamapant had nowhere to send them, except an intensive six-week program at the University of Michigan that cost $27,000. Few could afford it and the results didn’t last.
Adair and Shamapant would give clients handout sheets of things to work on at home, but that relied on caregivers’ ability to work with them. Caregivers were dealing with so many things, from their loved one’s medical and physical needs to paying the mounting bills. The other problem: “Spouses know each other so well, they don’t have the need to say the whole sentence,” Adair says.
At a time when stroke survivors needed to be working on improving their speech, they were developing workarounds with their loved ones that led to them speaking even less.
“You can imagine after some time, people leave them alone,” says St. David’s neurologist Dr. Thomas Hill. “They quit talking, and people quit talking to them. They don’t ever ask, ‘What’s going on? How are you feeling?’ You can imagine the isolation and depression that comes along.”
They felt humiliated, Shamapant says. They wondered, “‘Do I have my intelligence with me?’” she says.
Together, Adair and Shamapant decided to see how long and how much therapy people would need to be able to regain speech after a stroke.
Two different pathways
Adair, 47, grew up in Kansas City and came to Texas to go to Baylor to become a speech pathologist. She worked in a variety of places, including schools, nursing homes, home health services and outpatient settings before she came to Austin in 2000 and began working in rehabilitation.
Shamapant, 45, grew up in India and got her master’s degree in computer engineering there. She came to the U.S., first to Boston, then Houston, then to Austin, to work in technology. When her daughter, who is now 18, was 3, a preschool teacher sent her to see a speech therapist because she would answer the teacher in Shamapant’s native Telugu instead of English. It brought up questions for Shamapant: “What do you mean, and who’s a speech therapist?”
She became fascinated with the work and began taking classes to get her master’s in it at the University of Texas. During that program, she worked as an intern under Adair at St. David’s.
After Shamapant graduated and Adair became pregnant, they job shared, seeing the same clients. Two of them were engineers and were 36 and 47 when their strokes happened. Another one the doctor discharged from care and they both couldn’t believe it.
“We were seeing people in their 40s that had physical abilities, but their speech abilities were weak,” Adair says. “You can’t send a 40-year-old to a nursing home.”
They set up a pilot program for four of the clients that had been discharged. They would work with them three hours a day, three days a week for four weeks and see what happened. “We were very clear that this is brand new,” Shamapant says.
St. David’s gave them a vacant room; Adair and Shamapant continued to job share at St. David’s and did this on the side.
Four weeks into the program, not much had changed. They continued. At six weeks, they saw incremental change, but by eight weeks they were seeing progress. “But could they retain it?” Shamapant says.
They put together their first graduating class and Hill remembers attending it and seeing a man whom six years before couldn’t say any words. “He learned to say six words,” Hill says. “His grandchildren had never heard him talk. Imagine what that was like.”
Hill says he and Dr. Everett Heinze were amazed by how it worked. “We really were just watching the wonderful ideas and unbelievable effort of those women.”
Tom Hilgendorf was 51 when he had his stroke in 2005. He was in that first class. He had already done nine months of speech therapy at St. David’s. Colleagues from Concordia University, where he had been a professor, held a fundraiser to send him to the Michigan program, but afterward, he looked for a place to continue his therapy and couldn’t find one that didn’t charge $100 an hour.
When Shamapant approached him to try this new program, he agreed. He was able to read a book and discuss it.
He continued to work with Austin Speech Labs for two years and then, he says, “my prepositions were poor, and all of the sudden, with Shelley and Shilpa, it clicked,” he says.
He now leads a book group three mornings a week for clients. It helps him continue to practice his speech as well as help new clients.
Without Austin Speech Labs, he says, he would not be able to write or read and his speech would probably be a lot worse. “I was stuck for two years and had nothing to do,” he says. “Those two women are awesome people.”
Building the program
What Adair and Shamapant soon realized was that each client had different needs and a different timetable. They couldn’t just do an eight-week boot camp and that be the end of it. Now clients stay as long as they need.
Austin Speech Labs describes speech problems after stroke like peeling an onion. You remove one layer and discover there’s another layer beneath it that needs to be addressed, and then another layer. Clients often have several layers to work on before they regain the ability to process someone else’s words, form their response and then say it with the right words, right sentence structure and right tone.
Often new clients get there and think that this will be a fast process. During the tour on the first day, Adair or another team member will walk them around and introduce them. They will point out someone who has been there for seven years. “Sometimes that’s a hard pill to swallow,” Adair says. “They think, ‘I’m going to get done in eight weeks, or three to four weeks.’ It’s going to take a long time.”
Each client gets individualized therapy and group therapy. Adair and Shamapant try to put clients of similar age and speech deficits in the same group so they can cheer for one another and see the progress they are making.
By 2009, Adair and Shamapant left St. David’s to pursue Austin Speech Labs full-time and moved out of the St. David’s space for their own space, which they recently had to double.
Austin Speech Labs now has about 400 clients who were provided more than 14,000 hours of therapy last year. Clients pay $10 an hour, but it’s a sliding scale and 40 percent pay nothing. “As long as they need it, they should be able to get it,” Shamapant says.
Clients are seen by five speech therapists, a speech therapist assistant and student volunteers, who get hands-on training to supplement class knowledge. Therapists tailor the program to meet their needs, even having to learn finance, legal and automotive lingo to retrain a client in their previous profession.
Austin Speech Labs is also seeing clients earlier. Clients no longer wait for their insurance to run out. Often, they do both insurance-provided therapy and Austin Speech Labs at first. Austin Speech Labs is seeing clients as soon as a week after the stroke.
To offset the cost, Austin Speech Labs uses volunteer speech therapy students from University of Texas, Texas State, Baylor, University of North Texas and more. It also goes after grants to the amount of $475,000 a year and holds a gala fundraiser. (This year, One Word at a Time is on Tuesday.)
The fundraiser has allowed Austin Speech Labs to find volunteers that have no speech therapy training and is one way families have given back.
Laura York began volunteering in 2012 and later went to work for Austin Speech Labs as development director before starting her own company. Her mother, Elizabeth Brady, had a stroke in 2011 at age 62 and has been a client of Austin Speech Labs ever since.
“When I first met them, I thought there was a catch,” York says of Adair and Shamapant. “Why are they being so nice and helpful?”
Shamapant was the first person to explain to Brady’s family what to expect after the stroke. “There are 100 things that are hard about what happened to my mom, and for her it has to be unimaginably frustrating,” York says, “But Austin Speech Labs has been a very positive force for my mom and our family.”
Austin Speech Labs continues to try new things to get to the heart of how to make the process of regaining speech easier. In 2013, it piloted a music therapy program, which led to adding a music therapist to the staff.
In 2014, it started the research arm of Austin Speech Labs with four research students. It had 10 clients in a study that focused on reading and writing as well as speaking. It now has six clients in a study to see what electrostimulation of the brain might do to improve recovery speed.
“The research aspect of this is just getting started,” says Tom Locke, a board member whose daughter, Cheryle Locke, had a stroke 12 years ago at age 42. Cheryle Locke has been going to Austin Speech Labs for about five years. “She has more purpose in her life,” he says. “And she has hope.”
“It’s been a godsend,” he says.
While Austin Speech Labs still doesn’t have the answer to the essential question of how long it will take to be able to speak again after a stroke, they do see the progress that is being made.
“Each person is so different,” Shamapant says. “We learn what works for them. It grows very slowly, one word at a time, one sentence at a time.”
Austin Speech Labs
- 7800 Shoal Creek Blvd. Suite 136 S
- 512-992-0575, austinspeechlabs.org
One Word at a Time
- Honoring Dr. Everett Heinze and Dr. Thomas Hill
- When: 6:30 p.m. Tuesday
- Where: Four Seasons, 98 San Jacinto Blvd.
- Tickets: $175
- Information: austinspeechlabs.org
Stroke warning signs
FAST is an easy way to remember the sudden signs of stroke. If you see these signs, call 911 immediately.
F: Face drooping. Does one side of the face droop or is it numb? Ask the person to smile. Is the person’s smile uneven?
A: Arm weakness. Is one arm weak or numb? Ask the person to raise both arms. Does one arm drift downward?
S: Speech difficulty. Is speech slurred? Is the person unable to speak or hard to understand? Ask the person to repeat a simple sentence, like “The sky is blue.” Is the sentence repeated correctly?
T: Time to call 911. If someone shows any of these symptoms, even if the symptoms go away, call 911 and get the person to the hospital immediately. Check the time so you’ll know when the first symptoms appeared.
Source: American Heart Association, American Stroke Association
About Giving Ways
In Giving Ways, we introduce you to Central Texans who have started philanthropies that help us connect to our community and beyond. Find more Giving Ways stories at Austin360.com.
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