Cheryl, Karen, Shatonda

Aphasia Threads: Cheryl, Karen, and Shatonda

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 Cheryl, a person with primary progressive aphasia. Then, we’ll hear from Karen, who is a caregiver for her husband who had an AVM rupture in his brain. Finally, we’ll hear from Shatonda, an SLP in Kansas City, Missouri.

Aphasia Threads

Person with Aphasia

I was teaching psychology at a local university when I started having word finding difficulties. I had trouble remembering and recognizing my new students. As I have lupus, I thought it might be a symptom of that. One day, I walked into class and didn’t know where I was. I made an appointment with a neurologist that afternoon. It took several months of medical and cognitive testing, including a speech evaluation, but I finally got a diagnosis of primary progressive aphasia.

Cheryl

Aphasia Changes Your Life

I’ve had to stop working at a job I loved. I find myself at a loss as to what to do, as I don’t read and write as well now, either. My friends kind of drifted away––all but one––and my husband is supportive. My eldest sister refuses to talk to me anymore.

But There Are Things That Help

I attend weekly speech therapy at my university. It’s been a lifesaver. I get support for my disease symptoms, but also social support, and it makes me feel useful again. I love it.

And Things You Learn Along the Way

Read everything you can find. Talk to a speech therapist. Talk to a good counselor. Be kind to yourself. The grief process comes and goes. Stay involved in activities that challenge your brain and speech.

What Caregivers and Professionals Can Learn From Me

When I was a therapist, I would tell my therapy students, “If you’ve met one person with schizophrenia, then you’ve met one person with schizophrenia.” Every case, every person, every disease is different in some way. There’s no one-size-fits-all approach. You must listen to what the person says that they need.

Language deficits are not intellectual deficits. I’m still a person who went to college, got a PhD, was licensed. I can’t speak clearly, but I’m still here.

Aphasia Threads

Caregiver

When my husband had an AVM rupture in his brain.

Karen

Aphasia Changes Your Life

My husband gets very frustrated when he cannot communicate what he is trying to say. And in turn, I get frustrated when I can’t help him.

But There Are Things That Help

Speech therapy is helping him move over some of his language barriers.

And Things You Learn Along the Way

The term “one day at a time” sometimes goes down to “one minute at a time.” Take things slowly. They get confused very easily, and they get very frustrated when they can’t get out what they want to say.

What People with Aphasia and Professionals Can Learn From Me

Aphasia is very confusing to both the caregiver and patient. Everyone handles things differently. Know your patient’s limits. Take your time. Speak slowly. Repeat words or use different words if they still don’t understand. Lots of compassion goes a long way. It’s very easy to get angry like the person with aphasia does, but try not to. It just makes it worse.

Aphasia Threads

Professional

Shatonda works as an SLP in Kansas City, Missouri.

My family has a significant stroke history. My dad passed away at 36 years old from stroke, and my paternal grandmother at 63 years old from a second stroke. Incidentally, my paternal grandfather passed away in his 40s from a heart attack. When I was younger, I always thought about what this thing called ‘stroke’ was and if people actually survived it. I remember my grandmother after her first stroke having some trouble communicating, which I now know was both aphasia and dysarthria. When I went away to undergrad, I decided that I wanted to work with families affected by stroke and specifically when communication was affected. I guess it was my way of working in honor of my dad by making sure that other families affected by stroke had the best care possible.

Shatonda

What I’ve Noticed Along the Way

The thing I observe the most is the range of emotions that comes along with having aphasia for both the client and their families. I think probably one of the biggest frustrations is having something to say, knowing how to say it, but just not being able to say it. Our clients have so much going on from doctors appointments to figuring out their new normal. Having difficulty communicating can make just managing their lives much more difficult. I think also trying to maintain relationships in the context of communication difficulties can be angering, scary, and sad.

The joys, however, I hope, outweigh the frustrations. The faces of individuals as they say sounds, words, sentences, etc. for the first time in therapy is priceless. Our clients really get to see just how strong and amazing they are. As a therapist, it is a wonderful feeling at the end of the day when an individual with aphasia says “I love you” for the first time since their injury or illness to a spouse, child, or friend. For me, no amount of money can replace the fact that I got a chance to be part of that moment and that maybe, just maybe, I was partially responsible for helping that moment happen.

There Are Things That Help

I know it sounds cliché, but I think the most essential tool in treating aphasia is the human spirit and motivation of the client. Individuals with aphasia who want to communicate will find a way; I absolutely believe that. Their way of communicating may not always be in words, sentences, and paragraphs, but communication is so multifaceted that with hard work it can happen. As a therapist, my therapy approaches, tools, etc. are just a means to support what it is the client wishes to do. It is also my job to help my clients access the multiple forms of communication from gestures to verbalizations to AAC devices and to cheer them on along the way.

And I Encourage New Professionals to Learn About Aphasia

Do it! Being in service to individuals with aphasia and their families is such rewarding work. I cannot emphasize enough the importance of your course work in language development, neurology of language, language disorders, psychology of language, and aphasia. Some of these courses are more geared toward pediatrics; however, I firmly believe that those of us who work with individuals with aphasia should have a firm foundation in language development, how language is used, and what happens when one has a language deficit.

I also encourage you to read, read, and read, and then read some more. Journal articles are your gateway into the latest and best evidence-based practices in aphasia evaluation and treatment. To the extent possible, I highly encourage you to attend state, regional, and national conventions to hear about the work being done in aphasia. Connect with your faculty that have an interest in aphasia. Volunteer with local groups serving individuals with aphasia and their families. Essentially, immerse yourself in the culture of aphasia so that as you get your first job, you come in armed with a lot of knowledge, some experience, and most of all a sincere desire to serve this population. Get ready to have a blast!

What People with Aphasia and Caregivers Can Learn From Me

It’s a rewarding but tough profession. You, the individual with aphasia, may leave therapy for the day, but I, the SLP, still think about you throughout the day. I constantly think about ways to help you achieve your goals. I read tons of research articles and talk to colleagues across the country who can offer insights into the best approaches. I go to continuing education classes to learn more about how I can best serve you through evidence-based practice. Most of all, I care about you. A lot. And I want you to achieve your goals. Your aphasia does not take anything from your personhood. I know you are intelligent, interesting, have goals, dreams, and desires, and most of all are worthy to be heard. I enjoy getting to meet you for the first time and am honored that I get to be in community with you as you take this long, sometimes frustrating, journey back to communication.

I absolutely love the work that I do and would not change it for anything in the world.

Aphasia Threads

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