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Mary’s story: making a video to create aphasia awareness

The Learning Corp | May 29, 2019 | Aphasia

“The first word that I said was “tailgate” and I thought that is marvelous because if I can say ‘tailgate’, I can say anything… It is a long road to get there, but when we get there, it is beautiful because we can say our words again.” – Mary, recovering from aphasia from an AVM

Mary Borrelli experienced aphasia firsthand when she had a stroke at the age of 47. The elementary school teacher and acting principal woke up after six hours of surgery unable to speak at all. “I had to think so hard to get out one word. I knew the words in my mind, but I couldn’t say them. And I didn’t know where they went. I was worried I wouldn’t be able to talk normally again.”

Aphasia is one of the most common conditions caused by stroke but few outside the clinical world know what it is. In fact, given its prevalence, most of us have encountered someone with aphasia but just don’t know the condition by name. As our own Emily Dubas, MS, CCC-SLP, speech-language pathologist and Clinical Services and Education Manager, explains, “With aphasia, the brain tries to reach into its store of words and sentences, and comes up empty. And that’s huge because not only can you not come up with a word or spell a word, you cannot function in your daily environment.”

Mary took her aphasia rehabilitation one word  at a time. “I had to rebuild the pathways to get to the words, and then finally to put together sentences so I could talk to people again.”

An innovative video creates awareness of life with aphasia

June is Aphasia Awareness month and to honor Mary and the two million others living with aphasia in the US, we created a video which helps explain what it’s like to live with this little-known communication disorder, from the perspective of someone living with it.

Mary’s story is both unique and typical to those recovering from stroke. She had an Arteriovenous Malformation (AVM) – a kind of stroke where blood leaks out of twisted capillaries into the brain. It’s estimated that 18 out of every 100,000 people in the U.S. will experience an AVM in their lifetime. That AVM changed Mary’s life in an instant: one minute she was getting ready for work as the acting principal of the Hood School in Lynn, Massachusetts; and the next she was rushing to the hospital in an ambulance.

The damage to the left side of Mary’s brain was devastating. She couldn’t move her right arm and leg. She also couldn’t speak, and was soon diagnosed with aphasia.

In the video, Mary explains what it’s like to have aphasia. When she tried to speak, she would think of a word first, like, ‘school’, but instead of saying ‘school’, she would say ‘spoon’. She knew she was saying the wrong word, but it was incredibly difficult getting out the right word. “I had to think so hard to get out one word. And that was the hardest thing.”

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Overcoming aphasia with brain rehabilitation

The brain’s plasticity allows it to form new connections and rebuild skills that were once impaired or lost. Aphasia rehabilitation usually involves working directly with a clinician on specialized tasks designed to help relearn speech and language skills, like Mary did. The more you can intensively promote and exercise the brain, the more likely you’ll see gains.

However, health insurance typically only covers a limited number of sessions in-clinic, which could mean stopping recovery far short of what’s possible. Mary found the Constant Therapy app early on in her recovery and used it almost daily – ultimately regaining her speech, confidence and place in the classroom. In fact, a recent study using the Constant Therapy app found that stroke survivors can improve their language and cognitive skills long after a stroke has occurred, making gains even two years after.

Mary’s advice for those with aphasia

“After I realized that my recovery was not going to happen overnight, I cried myself to sleep for a month. Then I was determined to make a “new normal” for myself. I took all the speech therapy I could get. Sometimes I still cry, but just for a minute. I think of my “new normal” life and it makes me smile. Yes, it may take a while to recover from aphasia, but use all the therapies available to you, and don’t give up. I hope this video will let people know they can regain their speech, especially if they work at it.”

She advocates taking it “one word at a time …and at the end of the year (you’ll) be making sentences.”

Watch the video

Help others be aphasia aware. Share the video.

#WhatsYourOneWord

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