Aphasia Threads: Guy, Larry, and Marla

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 Guy, a person with aphasia. Then, we’ll hear from Larry, who is a caregiver for his mother who has aphasia. Finally, we’ll hear from Marla, a speech therapist in Scranton, Pennsylvania.

Person with Aphasia

Excitement.

Aphasia Changes Your Life

I try not to talk.

But There Are Things That Help

Silence.

And Things You Learn Along the Way

Slow and pre-think.

What Caregivers and Professionals Can Learn From Me

Think ahead.

Caregiver

My mom had a stroke about 10 years ago. It was major. She had to start from scratch. Relearn it all. She managed to regain everything but her speech. I attended therapy sessions with her for several months. It was my first experience with aphasia.

Aphasia Changes Your Life

My mom still struggles with speech, every hour of every day. Over the years, I’ve learned to listen differently. You have to hear more than the words. Locate the intention, survey the surroundings. It all helps. For the past 10 years, she calls every night at 9pm. The conversations are often brief, rarely longer than a few minutes. Sometimes I understand what she’s trying to say, sometimes I don’t. But it doesn’t matter, she knows I’m listening. Listen, don’t judge. I’m always honest with her if I don’t understand what she’s trying to tell me. It usually ends with a good laugh. Communication is stronger when it reaches beyond language. It has made our relationship stronger. We are all a little more protective of her, especially when you see how others react. Most people don’t understand aphasia. Because of this, it’s easy for someone to become isolated and to stop trying. My mom never has. Her perseverance is inspiring to our entire family.

But There Are Things That Help

She’s tried using computer programs but hasn’t really found much success with them. What has sustained her is her sense of humor. Laughter has helped more than anything.

And Things You Learn Along the Way

Don’t get stuck on the words. They often lead you down the wrong path. Focus on the situation, the environment, what you know about this person already. Keep it simple and concise, and be patient. Also, if the words aren’t coming out, move on and redirect the conversation. You may just need to approach it from a different angle. Take it easy. Imagine what it feels like from their perspective.

What People with Aphasia and Professionals Can Learn From Me

Sometimes we are over-protective because we want to be certain that our loved ones are treated respectfully and with compassion. There are many ways to approach a situation. Although traditional therapies are helpful, they don’t work the same way for everyone. Laughter, music, art can all be ways in. Try everything. Be a good listener even if what you’re hearing isn’t always clear. One thing that I’ve noticed over the years from being with my mom is that the words are still in there. Every once in a while, a word or a phrase that I haven’t heard in ages will find its way out and suddenly I realize that it’s all still there. Be patient and keep trying.

Even if you have a hard time understanding someone with aphasia, it’s important to keep communicating in any way that you can. Listen to music, watch tv, play a game, cook together. Stay engaged in any way that you can.

Professional

Marla works at Marywood University in Scranton, Pennsylvania. She’s a featured affiliate.

I have always been fascinated with the brain, especially how a neurological situation affects people differently.

What I’ve Noticed Along the Way

Since the degree of aphasia observed is variable person to person, it is always a new experience to apply my expertise. I welcome the challenge to patiently uncover each person’s communication strengths and weaknesses. I am fortunate to work in a university setting that provides the community with an aphasia support group where I instruct graduate students who major in speech-language pathology, provide group therapeutic services to individuals who had a stroke at any stage in their recovery, and help their families/caregivers.

The biggest frustration in treating aphasia is the lack of awareness. We still have a long way to go in spreading awareness and education about what it means to live with aphasia. Additionally, how the general public can better react/respond to those who have aphasia. The ultimate joy of treating aphasia is knowing you have the honor to work with an everyday hero; it is empowering and gratifying.

There Are Things That Help

I believe early identification and diagnosis of aphasia are important steps to maximizing rehabilitation gains. It is important that screening/treatment tools meet acceptable criteria of both reliability and validity to be suitable for use in clinical practice.

And I Encourage New Professionals to Learn About Aphasia

No two people with aphasia are alike with respect to severity, former speech and language skills, or personality. Tailor each screening/treatment to match the strengths/weaknesses of the individual. Teach the importance of patience to the client, the family/caregivers, and all treating professionals involved. Stay current on evidence-based practice and raise awareness!

What People with Aphasia and Caregivers Can Learn From Me

There are many ways to work on language. The type of treatment you get depends on what you want and need. There are many communication modalities that can be effective to promote communication. While each person is an individual and may have reactions to speech alternatives, research demonstrates that using Augmentative and Alternative Communication (AAC) helps build successful communication.

Read through Tips for Communicating With a Person Who Has Aphasia (from American Speech Hearing Association {ASHA} Website) These tips may make it easier for you to understand and talk with others. Share these tips with your family and friends.

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.