Sheree, Ann, and Jessica

Aphasia Threads: Sheree, Ann, and Jessica

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 Sheree, a person with primary progressive aphasia. Then, we’ll hear from Ann, who is a caregiver for her daughter who had a stroke after giving birth. Finally, we’ll hear from Jessica, a speech-language pathologist at Adult Speech Therapy Services in Olney, Maryland.

Aphasia Threads

Person with Aphasia

Six years ago, I was diagnosed with Primary Progressive Aphasia. My communication skills have deteriorated.

Sheree

Image by Iva Rajović via Unsplash

Aphasia Changes Your Life

Talking with people is difficult. It has ruined friendships because it makes people uncomfortable, and I’m too anxious to hold conversations. I have no caregiver, and it makes living by myself very difficult and limited.

But There Are Things That Help

Being able to text.

And Things You Learn Along the Way

Have caregivers and people around to help. And be patient with yourself.

What Caregivers and Professionals Can Learn From Me

Patience! Respect! Take the time to let us gather our thoughts and listen when we talk. We struggle with something you take for granted. We are frustrated. If you really care, be willing to listen with your eyes and ears. We just want to be heard however we have to convey what we are trying to say. Some days are better than others. Realize this is not just a speech problem, but it affects our brain, too. We’re not dumb; we just have a problem finding the right words. We try very hard, and it is exhausting at times.

Find a cure!

Aphasia Threads

Caregiver

My daughter had a hemorrhagic stroke on December 12, 2016. It occurred hours after giving birth to her daughter.

Ann

Image by Wes Hicks via Unsplash

Aphasia Changes Your Life

Our relationship is much closer than it ever was. She lives with us, and we are helping to raise her child. The aphasia itself is frustrating because she can’t read. Imagine not being able to read a book to your child. She can communicate pretty well and has made progress with speech therapy.

But There Are Things That Help

Continuous speech therapy has worked best for her.

And Things You Learn Along the Way

Be patient. Let them finish speaking. Let them practice. Ask open-ended questions. Never give up!

What People with Aphasia and Professionals Can Learn From Me

The aphasia affects caregivers, too. We mourn for the person that was, but we want to keep fighting for them, too.

Aphasia Threads

Professional

Jessica works at Adult Speech Therapy Services in Olney, Maryland. She’s a featured affiliate.

When I was in high school, a friend and mentor at my church suffered a stroke, which caused severe aphasia and left her unable to speak. I was struck by how quickly and completely the change in her ability to communicate impacted her life. When I went to college, I decided that I wanted to know more about the field of Speech-Language Pathology, so that I could one day help people with aphasia to regain their voices.

Jessica

What I’ve Noticed Along the Way

I suppose it’s obvious, but the biggest frustration for people with aphasia, their caregivers, and therapists are breakdowns in communication. On the flip side, it’s always a joyful moment when the person with aphasia overcomes their communication deficits and succeeds in communicating their intended message! That’s why I love treating aphasia. Although aphasia can be very frustrating, progress can be made and, with the right tools, communication can happen!

There Are Things That Help

I love Lingraphica’s TalkPath Therapy program. It’s free to use and allows for daily online language and cognitive practice between speech therapy sessions. The speech therapist can even select the tasks and task-levels appropriate for the user.

And I Encourage New Professionals to Learn About Aphasia

I would recommend volunteering your time or observing in a clinic that treats people with aphasia. There’s only so much a textbook or lecture can teach you about working with people. You will learn the most by seeing and doing.

What People with Aphasia and Caregivers Can Learn From Me

I am able to be an SLP because of research-based evidence that supports our work with people with aphasia and other communication impairments. Aphasia is not the end. It’s a beginning of sorts. Life can continue with aphasia, and with motivation, practice, and the right tools, people with aphasia can flourish!

Aphasia Threads

Want to Be Featured in a Future Article?

Aphasia Threads is an on-going project created by the National Aphasia Association. If you’d like to be featured, don’t leave a comment. Instead, please read the opening post for more information or fill out our form and we’ll contact you.

Comments

3 Comments

  • Christina Loiacano
    May 30, 2019 at 10:28 pm

    Last year my 47 year old husband suffered a very large stroke causing 70 percent brain damage to the frontal lobe., He suffers from Aphasia but every day he seams to be talking more and more. Doctors told me he would only know his address if we were lucky. He tells us were he wants to go by showing us it on google maps. I have hope that he will continue making good progress.

  • Patricia Humphrey
    September 10, 2019 at 1:09 pm

    I ended up with Aphasia after a chemical exposure in 2012. I has been a long journey. I was so frustrated not being able to read or follow a movie or TV plot. A friend suggested I go back to children’s and Teen’s books and movies. This was a huge help. Even starting with picture books, I enjoyed just turning the pages. I gave me something I could focus on without all the frustration. I took some notes while watching movies and could go back and watch the same scene as often as I wanted. Still working at reading, understanding and writing.

  • Anna M Kennedy
    September 11, 2019 at 9:05 am

    I was diagnosed with Primary Progressive aphasia a year ago — it is hard to find descriptions of people’s experiences, and how slow or fast the deterioration is. I can still speak fairly fluently, bu tI do notice that I am quieter in a group. I am also noticing short term memory lapses and am wondering if that is a secondary form of aphasia. It’s good to hear from someone who is managing on their own — I hope you have people in place to keep your spirits up! Thank you for telling your story.

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