Is Aphasia bad?



YES!  I know; I have it. Listen to Carl McIntyre’s story….

Kathryn Marshall 

Carl McIntyre made the movie “Aphasia” in 2010, five years after a stroke damaged 80 percent of his brain’s left hemisphere, thus severely impairing his processes of communication. McIntyre shared the movie and his presentation, “Hope is a Four Letter Word,” in Carroll Auditorium at Saint Mary’s on Thursday night.

Susan Latham, chair of the Department of Communicative Sciences and Disorders at the College, said aphasia is a communicative disorder that inhibits language but not intellect, resulting in the loss of the ability to speak and listen. Despite facing this situation and receiving news that he may never speak again, McIntyre continued to make improvements, Latham said.

“Carl starred as himself in a short film, recounting his story to adapt to the incredible changes in his life,” she said. “Now, he tours around the world, presenting the movie and motivating people with his story.”

Before his stroke, McIntyre worked as a teacher, actor and salesman. In the movie, McIntyre reenacts a year and a half of therapy and learning following the stroke, indicating how losing the ability to communicate changed both his and his family’s life. A presentation given by McIntyre followed the movie.

Aphasia Sucks!

“Having a stroke sucks,” McIntyre said. “Aphasia really sucks. Before I had a stroke, life is good. … Job is voice — actor, teacher and really good sales. … But after stroke, everything’s different. I can’t speak, and I can’t read or write. Nothing, absolutely nothing.”

A year and a half after the stroke, he was no better, McIntyre said. Being trapped in one’s head is a prison where there are disappointments everyday, he said.

“I remember saying, ‘Live or die, I don’t care. I’m over life,’” he said. “Bad place, really dark, dark place. But Carl is Carl and most times I’m happy.”

McIntyre’s recovery was a multi-step process. The first step was to mourn and realize he was no longer the same as the ‘Old Carl,’ he said. He then wrote the word ‘acceptance’ on a large paper pad — the second step towards recovery.

“I’m still here,” he said after writing the word. “I’m still relevant and no fear — fearless. … There is hope, hope is everything. No love, no life. … I love to live again, and I love hope.”

Another step in the process is hope, McIntyre said, and the final step is progress. No matter if it’s big or small, progress every day matters, he said.

He said he is lucky because he is still able to walk, and even though his right side is weaker and his timing is off, he is still able to toss a baseball with his son.

McIntyre said having purpose is also very important. Right now his purpose is the movie, he said.

“My brain is always on,” he said. “And faster every year because I’m working every day. … I’m trying.”

McIntyre said once insurance ran out and he could not pay for certain therapy programs, he did, and continues to, learn to speak again through free study subject programs at various universities. When learning to speak, associating words with pictures is necessary — such as breaking the word “when” into “w-hen,” while thinking of the bird, he said.

The best advice he can pass onto future speech therapists and families is patience, he said.

“Lot of patience because today is a good day, tomorrow not too much,” McIntyre said. “But patience can never quit. … I’m lucky because friends help life back … and understand I never be the same. My brain is fine. I can’t speak, but I’m no dummy.”

“One person understands me, I’m over the moon,” he said. “I know I never be the same, and every day is hard. But every day is good too. Possibilities, endless possibilities. … Aphasia, still sucks, but I win every day and you can too.”

Staying Positive During Stroke Recovery


Posted by Lisa O’Neill Hill

As a stroke survivor, you know all too well about the ups and downs of your journey. Some days, you feel upbeat about your progress. Other days are harder: You may be frustrated that you can’t button your shirt or remember a certain word.

Rehabilitation psychologist Patrick Caffrey, Ph.D., of Kansas City, Mo., who has more than 30 years of experience helping stroke survivors and others, understands these challenges.

When he was 17, Caffrey suffered a spinal cord injury during wrestling practice. He had immediate quadriplegia and sensory loss.  Caffrey underwent surgery, had lots of rehabilitation and tried to maintain a positive attitude.

“I just decided to get up every day and do the things I needed to do get better: eat properly, get enough rest and do the things they wanted me to do,” says Caffrey. He says his right side recovered about 95 percent but his left side didn’t come back well.

Caffrey offers some advice from his experience as a psychologist and as a patient

• Pace your expectations. Recovery from stroke is typically slow because of damage to the central nervous system. Try to avoid coming to any conclusions today about where you will be in the future. Instead, take it a day at a time.
• Acknowledge your accomplishments.“Don’t depend on other people to acknowledge your accomplishment; do that yourself,” Caffrey says. Try not to diminish your achievement by comparing it to the way you did it before or how long it used to take. Caffrey says it now takes him longer to mow his lawn but he still celebrates doing it. He recalled how being able to tie his shoes with one hand was a major accomplishment.
• Engage in daily meaningful activity. Caffrey decided to turn his focus to college. For others, it may be volunteering at a church or a hospital or writing. “If you’re just waiting around, waiting to get well, you’re going to be really discouraged,” he says.
• Connect with others. Socially isolating yourself can be harmful, he says. Getting involved with a stroke support group and connecting with other survivors will help you become more knowledgeable and make you feel less alone in your experience.
• Look at your challenges as a period of learning. Caffrey recalls one patient who avoided the phrase, “I can’t.” Instead, she said, “I haven’t found a way yet to do that.” Caffrey says his periods of frustration are the times where he’s growing the most.