Aphasia Threads: Melissa, Audrey, and Michelle

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 Melissa, a person with aphasia, who had a traumatic brain injury in 2013. Then, we’ll hear from Audrey, who is a caregiver for her husband who has PPA/FTD. Finally, we’ll hear from Michelle, a speech therapist who provides online speech therapy.

Person with Aphasia

On June 20, 2013, I had a traumatic brain injury. It was my 4th significant brain injury but the first diagnosis of Diffuse Axonal Injury and Post Concussion Syndrome.

Aphasia Changes Your Life

The first time I heard myself talking on a video shortly after my injury I was so shocked I stopped talking unless I absolutely had to speak. I had no idea what was wrong with my speech. I used to teach nationwide and talking in front of large crowds had been easy. I began to dread talking at all.

I struggled with word finding and organizing my thoughts fast enough to keep up with conversations. I was in nursing school, so it was especially difficult when I felt pressured to answer a question in class. I could “hear” the answer in my mind but couldn’t say it out loud.

When I would pause mid-sentence because I was searching for a word and someone would start talking, I would get so angry with them for interrupting me. I wasn’t aware how long those pauses were and my decreased ability to regulate my emotions created some moments of rage towards people who I loved and slowly people began to leave my life.

I also tended to repeat myself multiple times when giving others information. I’m not saying I would forget and tell them the same information over; my sentences were repetitive within a single exchange. I overexplained. It got to the point where people avoided having conversations with me.

It was obvious when my cognitive fatigue was setting in because my speech would deteriorate. I still have noticeable symptoms when I’m tired. My speech pattern and mechanics change. My decreased ability to communicate my thoughts is apparent as the search for words becomes more frequent and my compensatory mechanisms fail more often.

I also tend to have a hard time with comprehension of what others are saying and misinterpret information. That has damaged many relationships. I spent almost 2 years in cognitive rehab with an amazing SLP (who I renamed my “speech teach” because I told her that if she was going to help me learn to talk better, I needed to not be set up to fail because I couldn’t say her title). I am forever grateful for the help I received from her.

But There Are Things That Help

When I’m out in the world, I find that conversation implementing techniques such as description, replacement, or gestures help with word finding. They’re my go-to tools.

And Things You Learn Along the Way

Don’t compare yourself with anyone else. Your healing process is yours and will not look like anyone else and nobody can predict what it will look like or how long it will last. Perhaps most important, you don’t know what pace it will be.

Focus on showing up and doing your best in the moment. There will be good days and days that you may think you are losing progress. It happens. Know that. Healing doesn’t happen in a straight line. Don’t quit. Take breaks if you need to, just don’t quit. You deserve to be the president of your own fan club. Celebrate the smallest of victories because they are what add up to your overall success.

What Caregivers and Professionals Can Learn From Me

The words “at least” have no place in rehab. I need to be validated for my loss and celebrated for the work I am doing to recover. To hear “at least you _________…” makes me feel like I don’t belong in your office and you believe I’m taking you away from someone else who is in greater need of your time and talents. I realize there are degrees of aphasia, however, I am experiencing my aphasia and it doesn’t help me to see that someone else is suffering, too. It makes sad for both of us that we are each fighting our own battles.

This is just my PSA to the world: I know I have aphasia. You don’t need to tell me to take my time. I don’t appreciate being reminded to keep my introduction brief. It’s a bit of a set up for all of us to have endure a long introduction from me because I’m so focused on being concise that I can hardly remember my name and what I do. Please don’t be offended when I tell you I have aphasia to explain why I can’t put together a logical sentence to explain what is going on with my cable TV and you say, “It’s okay.” I tell you it’s really not okay. It sucks.

Caregiver

After my husband had heart surgery, we discovered that his word memory and speech challenges experienced over a couple of years was aphasia.

Aphasia Changes Your Life

I was torpedoed by his diagnosis of PPA/FTD with little information on this disease. His behavior changed with confusion, loss of memory, and behavior changes. I wake up each day wondering how it’s going to go. It has had a major impact on our relationship. Some days he doesn’t know who I am or thinks that I’m someone else.

But There Are Things That Help

A clinical trial with intensive speech therapy and brain stimulation at Johns Hopkins.

And Things You Learn Along the Way

Read as much information as you can find. Identify a caregivers group for loved ones with FTD since it is so rare.

What People with Aphasia and Professionals Can Learn From Me

Caregivers of FTD individuals want information about the rate of the disease’s progression. There is beginning to be more information and evaluation programs about FTD.

Professional

Michelle works at Speech Therapy That Works that provides online speech therapy.

The biggest motivator when working with people with aphasia is understanding where they were before with regards to their language and their overall functioning. This understanding creates an intense emotional component that is inevitably a factor when undergoing the healing process.

What I’ve Noticed Along the Way

My observations are that people with aphasia are extremely motivated to improve their abilities. On top of that, they struggle to find the emotional support needed to persevere through the inevitable ups and downs during treatment. Their biggest frustrations are when they cannot verbalize how they are feeling. Their biggest joys are when they can use what they have learned in therapy with someone they love.

There Are Things That Help

The number one tool we currently have is Zoom for video sessions (teletherapy). It allows us to provide treatment to people with aphasia who don’t happen to be near a facility.

And I Encourage New Professionals to Learn About Aphasia

Develop your counseling skills as well as your speech-language therapy skills. There is a significant emotional component when treating this population.

What People with Aphasia and Caregivers Can Learn From Me

We need to know what the most important aspects of communication are for you so that we will be able to tailor treatment to your life. There is nothing more motivating than being able to use what you’ve learned quickly.

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.