Aphasia Threads: Luanne, Robert, and Katherine

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 Luanne, a person with aphasia from encephalitis. Then, we’ll hear from Robert, who is a caregiver for a person with primary progressive aphasia. Finally, we’ll hear from Katherine, a speech-language pathologist.

Person with Aphasia

My aphasia was the result of encephalitis. When I first went to the hospital, they sent me home. It happened three times. I wish they had looked carefully for what was wrong.

Aphasia Changes Your Life

Before I got sick, I worked a lot – day and night – so I was too busy to think about anything. Then I got sick, and my partner was there. She stepped up and took care of everything (our house, etc).

At first, I couldn’t understand what was going on around me. I was very anxious, and I stayed at home feeling bad. I felt like I’d lost everything. After 2 years, my partner said I needed to go out and do something and not stay by myself – I had no idea what that meant.

I tried to find places to volunteer, to serve lunch to older folks, but I couldn’t talk very well and used my hands a lot, so they thought I wanted something to eat, not that I wanted to volunteer. At the fifth place I tried, they finally understood me. They asked me questions that I could answer with yes or no (“Would you like to help us at lunch?”), and I nodded.

They gave me a big hug, and it warmed my heart. I relearned many important words there – milk, coffee, salad. I’ve been there now for 8 years, and my heart gets bigger every day.

Being with others helped my relationship at home. My partner looked for local places to help with my aphasia. She found the Aphasia Center of Tucson. At first, it was very hard for me to stay for the full three hours. I got very anxious, and the speech therapist had to call my partner to pick me up.

But hanging in there gave me the chance to make things better. It took many years. Many people – my partner, my friends where I volunteer, the people at the Aphasia Center, my speech therapist – pushed me to learn. Now, I’m the one who pushes others. I encourage people to join me for breakfast every Friday, and now we have 20 people.

But There Are Things That Help

I have 2 calendars to help me keep track of my activities. One is a month-long calendar on my fridge and one is a week-long calendar that I can take with me.

I do a lot of speech therapy homework now. When I first started speech therapy, I couldn’t push myself to do the homework. Now, I’m much better. At first, I was angry about my aphasia. Now, I’m not so angry, and I really want to get better. I also realized that I needed to be able to communicate better to help others where I volunteer. I use Constant Therapy and Tactus apps for my homework.

And Things You Learn Along the Way

Put yourself out there. It can be scary but just do it. I get big hugs, and I’m not by myself.

What Caregivers and Professionals Can Learn From Me

If you live or work with someone who has aphasia, help them find good places to learn and to make friends. For me, I was able to find a place where I could be with other people who have aphasia. I was with them for 6 hours each week.

It was important for me to get out of the house. My dog takes care of me, too. Now, I can do most things on my own and I’m pretty active – go to movies, go out to eat, find new restaurants, volunteer, go shopping. At first, I was too anxious to stay in my aphasia groups. Now, I go out to restaurants and stores and talk with almost everyone there. I appreciate that people get to know me and trust me.

I’m happy to be alive. I get to look at things in a new way. My childhood was hard; there was a lot of pain in my family for many years. Now, I have a chance to build new relationships. I have a whole new family. When I worked all the time, I didn’t know anyone in my neighborhood.

Now, I walk almost every day, and I know everyone. All my neighbors come out and talk with me. When I worked, I didn’t have time for anything or anyone else. Now I get to do so much more with my life and meet so many sweet people.

Caregiver

They have aphasia through Alzheimer’s disease.

Aphasia Changes Your Life

Conversation has gone from our lives and communicating involves a lot of guesswork.

But There Are Things That Help

A tool is what I am seeking.

And Things You Learn Along the Way

Be patient. Seek support.

What People with Aphasia and Professionals Can Learn From Me

We know nothing nor where to look.

Professional

I have worked in several settings through my 30+ years as an SLP, and one of my favorites is working with people who have had strokes and helping them to recover and live their lives.

What I’ve Noticed Along the Way

I know that people with aphasia have struggles and are trying to do their best. We work through real-life activities and make lists of what they want to be able to do and find a way to do them. I teach my clients to be honest with people they are talking with about their aphasia and that they may need them to slow their rate of speech or give them time to respond. I often see spouses or family members answer for the individual with aphasia because he/she doesn’t respond right away. I think that adds a lot of frustration to the individual and often they give up.

There Are Things That Help

I like the Functional Communication assessment from Sarah Baar at Honeycomb Speech. That has made life-changing differences in how I first assess the client and how we proceed to move on with therapy.

I started an aphasia communication group that we call “Talk It UP.” The group loves getting together to just talk, however they can, and they support one another and give each other encouragement to say what they can/want. I always come with a topic or activity to help guide some of the conversations and give cues when needed. I make the group a learning time – to learn about aphasia and what cues are, how to use them, what techniques like Scripting can do to help in conversations or talking on the phone.

We practice the techniques and cueing during our group time. Family members are often there, too, and can learn along with their loved ones. A couple of the members have told me that they love coming to the group because they “feel safe” and know that they aren’t alone.

And I Encourage New Professionals to Learn About Aphasia

Do some webinars with Sarah Baar and learn about her functional communication assessment. She has so many materials that I would encourage you to invest in. Start where the patient is at – the standardized tests will only serve him/her if in a study or it’s required for reimbursement.

I use an informal assessment approach to find out what the client did pre-stroke, what they are doing now, and what their priorities are for getting back to living the way they want. You can use this information to write your goals and to reassess along the way. If they reach their goals, they will think you are the best SLP that ever lived!

What People with Aphasia and Caregivers Can Learn From Me

Answer Please understand that though we SLPs work hard and are continuously keeping you and your situation a priority to help you get where you want to be – we are NOT magical in getting the results you want! We may look like we work hard and have therapy activities/goals prepared for you each time you come in, but YOU are the one that is needed to do the really hard work.

You need to invest yourself in accomplishing the goals, doing the practice activities, and working on your skills in daily communications. Family, you need to use the cueing and slower speech rates when talking to your loved ones. You need to help them remember to use their communication skills from therapy, and you need to educate family and friends about HOW to communicate most effectively so the person with aphasia doesn’t lose friends and doesn’t get left out.

Communication partners need to pause and wait after questions because the person with aphasia needs time to figure out what to say or how to say it. When we jump in to answer the questions or keep giving them cues or re-questions, we defeat their opportunity to communicate for themselves. Just wait, and watch, and see what they can do! And watch the SLP model the waiting and watching for those subtle cues the individual gives when they decide they need more help to respond. Watching them and learning what those cues are is going to be one of the family’s/friends’ most important jobs of all!

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