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Speech and communication are complex functions we take for granted until something goes awry, like a brain injury. After a stroke, the level of impairment may range from minor to severe, and it is not uncommon for multiple aspects of communication to be impaired. Just 10% of people will fully recover, 25% will have a minor impairment, and 40% will have a moderate impairment. Matt is one of these statistics. Individuals can learn strategies to speak and communicate again to varying degrees. We are grateful that he is one of the fortunate individuals whose speech and communication have steadily improved, and in general, he can communicate, express himself, understand others, and be understood—and yes, there is still room to improve.
After his brain injury, Matt’s earliest forms of communication were as simple as opening his eyes to look at us or turning his head when he heard a familiar voice. There was a tender moment in the ICU in which he intently looked into his father’s eye as if grasping for something familiar to hold on to, anything to ground himself.
His receptive communication, that ability to understand what was being said and comprehend that information, slowly began to return three to four weeks after his injury and ahead of his ability to express himself. Matthew’s ability to hold a finger up when asked was an early indication that, at least in part, he could hear, process, and intentionally respond to some of what was being said. However, this did not translate into the most basic ability to answer simple yes or no questions by nodding his head or squeezing his hand. That would not come for many, many months.
Facial expressions were another form of communication, both intentional and involuntary. Initially, his facial expressions were in response to pain or physical stress. In his early days at Sunnyview Rehab Hospital, we rarely got a response when we entered his room and greeted him. He just stared off into space. His speech therapist at Sunnyview was excited the day Matt looked shocked when he spilled water down his front and later when he had a sheepish look on his face because he had only halfheartedly done a requested task.
Matt’s first forms of vocalization were involuntary--burps, coughs, and groans. What an odd thing to celebrate, but we did. Everyone, including the housekeeping staff, couldn’t wait to hear him talk. We will never forget July 18, 2018, Mike’s and my wedding anniversary, the day he made his first intentional sounds, “eee,” “ooo,” “ah,” and “huh.” People cried, and the speech therapist gave him a big hug and visited him three times that day to make sure it was real. With a raspy voice, he began the difficult task of trying to say everyday words and phrases such as “I’m fine,” “My name is Matt,” and the days of the week. Talking took a lot of effort, and Matt easily fatigued or perhaps gave up in frustration. Four months after his incident, he began to initiate and express simple needs, such as “go to bed” or “video,” and started to answer “yes” appropriately. Until now, Matt had sporadically used yes/no flashcards but never learned to shake his head in agreement. This simple ability to say yes or no opened a whole new world to him and us. Now, we could ask his preference and confirm that he understood what he was being requested or told. Twenty questions became our new mode of communication—it was a beautiful thing!
Gradually, Matt learned to talk more. At first, he was so quiet we could barely understand 25-30% of his words. Occasionally, he surprised us by speaking phrases and words clearly and loudly. Sometimes, he perseverated, meaning he got hung up repeating the same word. And often, he couldn’t think of and/or say a specific word. By August, he could tell the days of the week, months, and numbers-- but letters were a problem. I remember the first time Matt and I had a quasi-conversation of a few back-and-forth words. I was all smiles! Unless it was to meet a basic need, Matt couldn’t initiate a conversation and relied on others to direct the flow of topics.
Speech Therapy Baseline Tests
After Matt came home to live with us in September, he enjoyed interacting and talking (I use that word loosely) with people who visited. His ability to express himself depended greatly on the visitor's skill to engage Matt in a way that drew on his interests and speaking abilities. My boss and friend, Peggy Lounsbury, was a natural. She was good at asking open-ended questions, which encouraged or forced Matt to say more than if asked a yes/no question—a strategy we should use more often. It required patience to wait for him to find the right words and taxed our ability to understand what he was attempting to say—just like when he was a toddler first learning to talk.
In short order, we started outpatient speech therapy at the Regional Therapy Center in Saratoga Springs. This began a three-year relationship with his therapist, Jessica Hirliman. To measure his baseline function, she ran a battery of tests and then tailored her therapy sessions to meet his unique needs, targeting the most important skills first. Matt had severe speech apraxia or disruption of motor control and planning. One treatment approach incorporated singing songs and reciting the days of the week or month. By nature, these are reflexive activities and require minimal concentration. Singing also tapped into his inherent musical inclination, targeting or ‘lighting up’ associated brain areas to help make new language pathways. Therapy focused on identifying objects, numbers, and colors. In addition, Jessica addressed his difficulties with swallowing, choking, and cognitive function. She provided home exercises to strengthen and stretch neck and throat muscles and taught his vocal cords to vibrate more strongly—a mastery essential for him to speak and eat safely. Since there were so many areas of need, the speech therapist routinely rotated tasks to address all impairments.
To augment therapy, Jessica provided us with a home program of exercises and activities to do. Matt did vocal scales –Do, Ra, Me, Fa, So, La, Ti, Do-- as loudly as he could while simultaneously doing an isometric arm exercise. Activating his arm muscles--by pulling up or pushing down on his chair--added strength to his vocal cord closure. Upon Jessica’s recommendations, we subscribed to a speech therapy app, Constant Therapy. Not only did this program allow him to work on his speech and cognition daily, but unlike everything else in his life that required help or oversight, he could do some activities independently. Activities included sound recognition, following verbal and written instructions, object recognition, repeating words, etc. He needed MEGA help to recite words and sentences. It was painfully slow and maddening for the helper, even more so than for Matt. He had to learn to say the word and say it clearly and loudly enough for the program to recognize his words. The word “octopus” was almost our undoing! His sister, Megan, diligently worked with him for 20 minutes, but he kept saying “octapoosh or octopiss” until he finally got it right! Matt celebrated by giving two thumbs up and shouting, “Booya, baby!” This was followed by a loud groan when he realized there was still another word to do before he was done! This ability to say booyah baby with no issue after struggling so long to say an octopus is classic of speech apraxia.
As we moved into the new year, we encouraged Matt to talk with family and friends on the phone. That raised the bar. Matt needed to speak clearly since people couldn’t read his lips or see his expression. Volume was an issue then and more so in a noisy car. As we drove to and fro to appointments, I quizzed him on different topics, especially recalling the names of his family and relatives. Each time, I had to remind him to talk loudly and turn his head towards me so I wouldn’t have to lean halfway across the car to hear his voice. On rare occasions, he remembered and spoke up. Once, when he was talking to his Aunt Debbie on the phone, his words came out all garbled. Shaking his head, he laughed and said, “I screwed that up pretty good.” In general, though, Matt couldn’t identify his mistakes or “shortcomings.” This lack of insight and awareness into his deficits and limited carryover from day to day were traits associated with his brain injury, not a stubborn nature. But that knowledge didn’t make it any less frustrating for caregivers. Combined with his limited short-term memory, they impeded progress—as if riding a car brake while attempting to reach a destination.
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