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Friends of Aphasia helps Tucson stroke survivors & other patients process words

Before his first stroke, Peter Sadatomousavi was an engineer at a mining company in San Jose, California, and had an MBA from a university in Germany.

In 2018, Sadatmusavi suffered three consecutive strokes and was diagnosed with aphasia as a result. Aphasia was caused by brain damage that left him unable to speak.

Now when I go to Starbucks, I see the following message on my phone. “I can’t speak, but I can hear you. Give me water with ice.”

Sadat Mousavi found friend with aphasiaa non-profit center in Tucson, who came to attend the conference via Zoom before deciding to move to Arizona to attend in person.

And he hasn’t lost his penchant for innovation. Despite his stroke limiting his mobility, Sadat Mousavi still plays the guitar, swims with one hand, wears a tie, cuts steak with a rolling knife, and invented a nail clipper. with the same hand he holds it in.

With the help of Friends of Aphasia speech therapy, he said he was learning to speak a few words at a time.

Friends of Aphasia is the only organization of its kind in Arizona and one of the few in the country. Former US Congressman Gabriel Giffords was diagnosed with aphasia in 2011 after surviving an assassination attempt that left him with a bullet wound to his left brain. Giffords’ recovery was difficult, but with the help of speech therapist Dr. Fabi Hirsch Kruse, he eventually regained his ability to read and write.

In 2018, Giffords, Kruse and longtime friend and event planner Susie Gershman founded a nonprofit in the hopes of making Tucson a place of healing and community.

“What we often fight is that it’s not about cognitive and thinking skills, it’s about language and communication. You’re as smart as ever, so I think this is doubly frustrating,” Kruse said. He told a group of aphasia patients. In the heart of North Cracroft Road. “There are so many things I want to say, but the words are hard to come by.”

Aphasia affects a person’s ability to express and understand speech. Members of the group range in age from 23 to 80, all affected by the disorder. Kruse said some members just have trouble finding words at times, while others feel they can only speak a few words.

In a group session, Sadatomusavi, Ronna Howard, Andy Ortiz and Russ Ferry shared their experiences living with aphasia with Kruse’s help. The four are observant and can communicate in a unique way. Some people can understand everything that is being said, but some people have trouble formulating responses, others have difficulty understanding them. During the meeting, Kruse writes her question on a piece of paper and holds it up for participants to better understand.

Like many members of her group, Ronna Howard developed aphasia after her stroke. Howard can understand what others say, but she has difficulty speaking. She communicates primarily through her Speech Assistant app on her cell phone, which allows her to type out her responses.

“Aphasia is devastating,” Howard wrote on the app. “I tried so hard to get my words back, but it takes time.”

Having lost the use of his right hand after a stroke, Howard taught himself how to write with his left hand and how to ride a paracycle. Howard founded Tucson Spokes, a group of aphasics on recumbent tricycles. The goal is always to raise awareness.

One of the most difficult things about living with the disease is the fact that it’s relatively unknown, said Andy Ortiz, who didn’t know about the disease until he had his own stroke. Told. Simple interactions like ordering at a restaurant or asking to pet a Siberian Husky in the park can feel impossible when the other person has never heard of your illness.

When she goes out, Ortiz wears an aphasic friend’s hat and rubber bracelet, hoping to strike up a conversation. Ortiz and members of his group carry business cards with the definition of aphasia on them to hand out to people in coffee shops and movie theaters.

“When I had my first stroke, I cried a lot,” Ortiz said. He speaks at a steady pace, but he has trouble understanding the language at times.

Ortiz said it was difficult even to walk at first.

“At first I couldn’t do anything. I had to do one step in the garage,” he said. “Then I ran half a mile, then a mile, and before I knew it I was always going to Tumamook Hill.”

Last year Ortiz competed in the El Tour de Tucson with the Giffords and Friends of Afacia teams. At the center, Ortiz found a group of people who understood what she was going through and could communicate without judgment.

“We can express anything: goofy, sad, crying,” Ortiz said. “This is a small, quiet place to just talk.”

Russ Ferry developed aphasia following a stroke on New Year’s Eve 2019. He speaks slowly but clearly. Before his stroke, he worked as an entertainer. He said his job included writing scripts and typing as fast as he could speak. He now has problems with numbers and spelling, which are common symptoms of the disorder.

Aphasia now requires a lot more thought and effort that used to come naturally, Ferry says. He still wears a watch, even though it’s hard to tell the time.

“That’s what I was doing instinctively,” Ferry said.

He said that attending classes gave him a community he wouldn’t otherwise have access to. And his speech is improving little by little.

“The first time I was here was a year ago and I didn’t recognize the word ‘I’,” Ferry said. “And it’s always getting better.”

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