James Daniel, 48, survivor of a hemorrhagic stroke, and his wife Tammie Brewer of Yukon, are very thankful for the excellent resources and level of skilled professionalism they found at the John W. Keys Speech and Hearing Center when help was desperately needed.
Speech therapy is often primarily associated with developmental needs of children and its value cannot be underestimated. Services are in demand, but clients who benefit span all age groups. In addition to therapies tailored for children, the John W. Keys Speech and Hearing Center, located in the University of Oklahoma College of Allied Health on the OU Health Sciences Center campus, offers comprehensive treatment for adults, often seen in connection with brain injuries or neurological disorders.
The day in September 2016 that changed James Daniel's life began like most others. An avid mountain biker and road cyclist, Daniel made his usual loop around Lake Hefner; completed a regular workout routine; put in a full day of work at his job with a commercial fire and safety firm; and returned home to enjoy dinner with his wife.
Without warning, as the couple watched TV that evening, Daniel began to experience the "worst headache of his life." Daniel resisted the idea of going to the hospital, but Brewer, a registered nurse, knew that immediate action was necessary. Later, they would learn that Daniel had experienced a massive stroke, the result of not one, but two brain aneurysms that ruptured. They now know the condition is hereditary, and that two other family members also have identified brain aneurysms and are monitoring them. "Even now, it's frightening to think how it was just there, waiting to explode," Brewer said.
An aneurysm is a bulging blood vessel that can leak, or as in Daniel's case, rupture, releasing a rush of blood into the brain. This type of stroke occurs when blood fills space between the brain and thin, protective tissues covering the brain. Most aneurysms never rupture or create health problems, and are often detected as patients are screened for other conditions. However, if an aneurysm ruptures, it becomes a life-threatening event requiring immediate medical attention.
The aneurysm was located under the spinal artery at the back of Daniel's head. The force of surging blood caused his brain to shift incrementally to the right of the skull. In one of many procedures that followed, Daniel's carotid artery, dissected during the stroke, had to be surgically reopened. He remained in a coma for the first three to four weeks of what became a four-month hospitalization. Daniel underwent multiple surgeries during this time, including a brain flap to remove the large clot on the left side of the brain; placement of complex brain stents, a feeding tube and tracheostomy, followed by weeks of inpatient rehabilitation.
Pressure on the optic nerve resulted in visual deficiencies, mostly affecting peripheral vision. Daniel's condition is monitored annually by Anil Patel, M.D., FRCSC, FACS, neuro-ophthalmology specialist at Dean McGee Eye Institute. While impaired peripheral vision is a concern, Patel believes Daniel is fortunate to be alive, with any remaining vision.
Among other long-term effects of the stroke, Daniel has aphasia, a language impairment that occurs when language areas of the brain are damaged. Because multiple areas of the brain are involved in language function, some regions may remain healthy and unaffected. Fifteen percent of people under age 65 who experience a stroke develop some form of aphasia. Types of aphasia vary according to the area of the brain that sustained injury.
Daniel has Broca's aphasia, one of three common forms of aphasia, which prevents a person from forming intelligible words and sentences. Broca's usually doesn't impair the ability to understand others when they speak, but patients often have extreme difficulty retrieving learned language and formulating appropriate responses. Broca's also may cause alexia (loss of ability to understand written or printed language) and agraphia (impaired ability to write or process written language). The affected area of the brain, the dominant frontal lobe, also houses vessels that deliver blood to movement centers. Paralysis, usually affecting the right side of the body, is another manifestation of Daniel's stroke that presents challenges daily. He has limited use of his right hand.
Daniel has been in speech therapy for four years now. After discharge from the hospital, Brewer and Daniel explored and experienced a number of speech therapy options. One of these, a summer camp for people with aphasia, was led by Karen Copeland, M.S., CCC-SLP, who suggested the focused, adult-specific services provided at the John W. Keyes Hearing and Speech Center. It was their first awareness that such services were available.
As the first order of business before meeting with a speech pathologist at the Keys Center, Daniel took the Western Aphasia Battery, a diagnostic tool used to assess linguistic and certain nonlinguistic skills of adults with aphasia. The WAB provides information that can diagnose the specific type of aphasia by identifying the affected area of the brain causing aphasia. They were astounded by the thoroughness of this comprehensive diagnostic approach. Brewer remembers her husband repeatedly saying, "Wow!"
She said their experience at the Keys Center has been nothing but positive. "We were just trying to find our way through this maze, and realized this protocol is what we should have seen all along. James had never before been asked questions like this - being asked to 'think outside the box.' Just as important, he was treated like an adult. Approaches and therapies used elsewhere seemed more appropriate for children, and so there was a tendency to interact with James on that level." Brewer said it was at the Keys Center where she was instructed, for the first time, not to help Daniel with answers or assist him in any way. "No one had explained to me that he needed to do it on his own for the best outcomes."
Daniel has been in therapy at the Keys Center for two years now. They were excited about working with Jennifer Tetnowski, Ph.D., whose area of special expertise is treatment for adults with aphasia. Here too, Brewer and Daniel were introduced to a wealth of previously unknown resources, including smart phone apps with the technology to gauge brain activity, and even gaming programs that facilitate rehabilitation of Daniel's hand. These robotic games are strategically designed to not only restore muscular ability, but in activating those muscles, new brain pathways are activated.
Additionally, they found aphasia support groups for adults, done quite effectively using the Zoom platform. Brewer said these are especially vital through the COVID-19 pandemic to keep isolation and feelings of hopelessness at bay. The pandemic made virtual interaction necessary, and Brewer values the ease and convenience of scheduling. While they are both grateful for the technology that makes it possible to continue therapy with little disruption, in-person therapy has undisputed benefits and Daniel yearns for the return to face-to-face sessions.
"People wonder how you can participate in a support group if you can't speak, but Dr. Tetnowski has helped James find other ways to 'talk.' The tools are helpful and remarkably effective." Daniel has therapy with Tetnowski twice each week. Sessions may include graduate students specializing in speech pathology, who gain valuable experience in their chosen field of practice.
Tetnowski said the Keys Center is uniquely positioned to be an integral step in the rehabilitation process. "The goal is to improve a person's social and vocational outcomes following an injury like James'," she said. "While it's necessary to relate initial treatment for communication deficits to meeting medical needs and basic activities of daily living, continued treatment is essential to address functional limitations imposed by neurogenic injury or disease."
Many people experience neurogenic-related communication deficits as a result of progressive diseases that impact communication and related cognitive-linguistic function required for independent living. Tetnowski said this is seen often in patients with dementia, Parkinson's, multiple sclerosis, amyotrophic lateral sclerosis, and primary progressive aphasia. She explained that one barrier the center and its clients face is finding appropriate funding resources. "While some adult clients may have insurance benefits, those benefits may be exhausted by previous medical claims well before we begin therapy, or the deductibles put treatment out of reach financially."
Another distinctive characteristic of therapy at the Keys Center is Brewer's inclusion. She not only "attends" periodically to observe, but also is consulted monthly to discuss Daniel's progress, goals and homework assignments. Brewer said, "Other providers just handed us a folder with written instructions and assignments, but no hands-on skills practice. This homework is more practical and clearly serves a specific purpose to engage and rehabilitate different areas of the brain."
For example, Daniel was encouraged to hone his cooking skills for additional simulation of brain function. The processes - reading, assembling ingredients and following instructions - all serve to engage different areas of the brain. While Daniel is typically ready to try anything, this raised concerns for both Daniel and Brewer, related to the paralysis in Daniel's right hand. Tetnowski was ready with practical solutions, suggesting the use of cast-iron cookware. The weighty skillets gave Daniel better control even with the impaired hand. "His attempt at microwave cookies, however, was not a great success," said Brewer.
The Keys Center acquainted Daniel and Brewer with other practical, yet innovative approaches to therapy. One assignment was to collect a wide variety of photos and assemble them on a display board. "James arranged the photos, explained who the people were and what they were doing." This multi-level process sets in motion different but related reasoning skills in a complex process that helps the brain create new pathways around damaged areas. To advance the same goal, Tetnowski introduced a simple exercise, which Brewer says is surprisingly effective. "James scrolls through his email account and practices reading random words found in subject lines. Through all these exercises, I remind him 'you used to think this way, but now, you have to think that way,' and it really is possible."
Daniel often uses short phrases augmented by hand gestures, another skill he is working on with Tetnowski. He makes use of objects or mobile devices to demonstrate messages he wants to convey.
When Brewer is at work, she can count on Daniel to complete his therapy homework assignments, as well as domestic tasks. While these chores are part of normal household management, they also are part of physical and brain rehabilitation.
"When James finally came home, I took vacation time to help him re-adjust to the house, to be sure he was independent and mostly self-sufficient." She is grateful for neighbors, friends and family members who made themselves available to look in on her husband, providing transportation to appointments and caring for him in other ways. "Because James had had occasional seizures, I was really fearful, but that support made it possible for me to return to work with less anxiety. I'm confident he can prepare meals safely, navigate around the house and take care of himself."
Using smart phone apps also required Daniel to do a lot of re-learning. "I found an app that allows James to text me if he has a problem. The app preloads questions and answers for quick and efficient messaging.
Tetnowski explained that design and implementation of treatment at the Keys Center is continually informed by client response and assessment techniques that align with the client's personal environment and immediate community. The measure of client response and/or performance is closely related to the desired communication outcome. These are guiding principles that keep the focus on the transition from acute rehabilitation to reentry into established social and vocational communities. "This involves treatment not only of the person and a particular impairment, but also includes the entire communication environment, which encompasses family and community."
Other areas of adult programming include work with individuals with fluency disorders and auditory processing disorders. The center continues to expand services, recently adding treatment and therapy for voice disorders.
"I love the John Keys Speech and Hearing Center and the awesome people we found," Brewer said. "I know I can call them at any time for help with questions about treatment, making appointments or anything I need. The whole program is just phenomenal."
Brewer described Daniel as "hard-headed" and said he does not readily accept "No," as a response to something he wants to try. Her sense of humor remains intact, as she observes with a laugh, "It's really a little ironic - he used to always have the last word."
Although his comprehension of speech, environment and information is flawless, Daniel understands that a future employment situation may not be what he might have imagined four years ago. Still, he works relentlessly to improve his speech and communications skills. He said there's much to look forward to, and he's determined to not only regain more use of his right arm but also to learn to speak again. Daniel agreed that speech is the key that will open doors, and he is confident of his continued progress.
Brewer still becomes emotional as she remembers the trauma and fear during those early months, then finding the road to recovery a steep and rugged climb. A triumph of persistence, determination and adaptation, Daniel has made remarkable progress to regain fluency, communication and language skills, and he can now ride a three-wheeled bike. Because of lost peripheral vision and the paralysis of his hand, it's unlikely that Daniel will return to traditional mountain biking, but he continues to work on his posture and balance, and faithful friends help him explore solutions and overcome obstacles.
In his life before the stroke, Daniel and friends were regular participants in an annual 100-mile bike ride that begins in Wichita Falls, Texas. One of Daniel's goals was to participate at some level in the 2019 event. He completed 25 miles of the course. Brewer said they have come to acknowledge life before and after, and some parts of "life before" they simply had to let go.
"James doesn't like being told he can't do something," Brewer said. "So, he will bike again and he may work again, but it will be different. We'll try everything, understanding everything will be different."
John W. Keys Speech and Hearing Center hosts a free monthly aphasia support group. Call 405-271-2866 to learn more about the group, as well as other treatment and therapy options.