marilyn, vicky, fatima

Aphasia Threads: Marilyn, Vicky, and Fatima

Welcome to the Aphasia Threads Project, which weaves together three points-of-view: people with aphasia, caregivers, and the professionals who help each family navigate aphasia. Each week, we bring together three unrelated stories, one from each member of this triad, to learn from their experience. This week, we’ll hear from Marilyn, a person with aphasia. Then, we’ll hear from Vicky, who is a caregiver for her husband after his stroke. Finally, we’ll hear from Fatima, a neuropsychologist in São Paulo.

Aphasia Threads

Person with Aphasia

I was searching for words. I thought I was just under stress, but the diagnosis was aphasia. I go to speech therapy, a neurologist, and counseling.

marilyn

Aphasia Changes Your Life

I can’t talk on the phone. I told my family and friends that I have aphasia.

But There Are Things That Help

I just text everyone. I play Words with Friends and Word Cookies. I write in my journal every day.

And Things You Learn Along the Way

Go to speech therapy and counseling. Tell your friends and family that you have aphasia. They will understand.

What Caregivers and Professionals Can Learn From Me

I don’t know.

Aphasia Threads

Caregiver

It was December 19, 2014. I came home early because we were going to a dear friend’s funeral. The first thing my husband told me is that something weird happened while he was taking a shower. He lost his vision momentarily, but he was okay now. Then he said or did something that––I still think about it––made me realize that something was not right.

I did the FAST test on him. He passed it, but I still felt something was wrong. I called our family doctor, and he talked to my husband and then told me to call 911. They took him to the ER, and my sons and I watched him have a hemorrhagic stroke. My world stopped. He then had a second stroke in June of 2018.

Vicky

Aphasia Changes Your Life

I was an instructional assistant for almost 20 years, working with special ed children. It was hard to take care of my husband, take him to all his therapy appointments, and work full time. I decided to retire early and did so in December 2015. Because of my experience, I was able to deal with my new normal and be of help to my husband in his recovery. I was able to get him into some studies with the CARR program at Georgetown Medical Center and continue with his speech therapy. I am very protective of my husband. After 42 years of marriage, we have become even closer.

But There Are Things That Help

We try to spend time with friends and relatives so that we always have others around him to help him with his speech. He uses Constant Therapy on his iPad, and he recently started using Tactus Therapy. He is ambitious, has a good disposition, and is always willing to try new things.

Vicky

And Things You Learn Along the Way

Learn as much as you can about aphasia. Knowledge is power! Be patient and try to take care of yourself, too. Allow family and friends to help both of you.

What People with Aphasia and Professionals Can Learn From Me

It is not easy to be thrown into something like this. Aphasia affects both the patient and the caregiver. Aphasia patients have lost their speech, not their intelligence.

Aphasia Threads

Professional

Fatima works as a neuropsychologist in São Paulo.

I was a psychologist, and I could not believe that there was no way to treat people with aphasia. I went to study brain functions and became a neuropsychologist, a specialist in language, in Brazil.

fatima

What I’ve Noticed Along the Way

Aphasia needs to be better understood by all in order to lessen prejudice. Psychology should have a specialized study of aphasia.

There Are Things That Help

I observe that the best results include treatment in the form of a conversation group. I research a lot of options in the field of neuropsychological group treatment, and I see that the return to functionality is very promising.

And I Encourage New Professionals to Learn About Aphasia

Everyone needs a therapeutic listening environment where they can state their feelings and difficulties without hurting or worrying their families.

What People with Aphasia and Caregivers Can Learn From Me

“A alegria de viver a cada dia é o mais importante” in Portuguese means “The joy of living each day is the most important.”

fatima

Aphasia Threads

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