Aphasia Threads: Shannon, Kathy, and Jennifer

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 Shannon, a person with aphasia after a stroke. Then, we’ll hear from Kathy, who was a caregiver for her husband who had primary progressive aphasia. Finally, we’ll hear from Jennifer, an SLP and the STARS Program Coordinator at Voices for Hope.

Person with Aphasia

After I had a stroke and removal of a clot, I got aphasia. At first, I couldn’t talk, but with therapy, I was able to regain my speech but with aphasia.

Aphasia Changes Your Life

My word-finding is terrible and it affects the way I talk with people. My relationships have suffered immensely.

But There Are Things That Help

Singing helps. I’m in an aphasia choir. Also, when I picture the word I’m trying to find.

And Things You Learn Along the Way

Patience and more patience. You will get there, but it will take time. Don’t get discouraged.

What Caregivers and Professionals Can Learn From Me

Let the person with aphasia say what is happening. Try not to answer what you think they’re trying to say. Give them time to answer or say what is happening. We’re not stupid people. We know what we’re trying to say.

Additional note from Kathy: “My dear husband passed away on April 29th. I am devastated. This disease is horrific. I believe he is in a better place now. Love to all those affected by PPA.”

Editor’s note: The words below were written at the start of their PPA journey. Our heart goes out to Kathy and her family.

Caregiver

My husband was diagnosed with primary progressive aphasia this past December at age 67.

Aphasia Changes Your Life

We are just beginning our journey. The retirement plans we had are no more. We have no family close by, so I am it.

But There Are Things That Help

We just started speech therapy. I say “we” because I need to go.

And Things You Learn Along the Way

I have no advice yet except that I’m trying to take things one day at a time.

What People with Aphasia and Professionals Can Learn From Me

I’m afraid of the future. No one will give me a prognosis. They say it varies. Will I run out of money? What if I get sick? I wish there was more money to help with respite. Not just for those who have no money.

Professional

Jennifer works at Voices of Hope as the STARS coordinator.

Initially, I worked in an acute setting at a trauma level 1 hospital and found that working with patients who experienced aphasia after a traumatic event gave me the opportunity to learn about the brain and apply my clinical skills in ways that I never appreciated before.

When we are in graduate school, we learn about aphasia, but it is a broad sweep of information that we cannot truly understand until we are given the opportunity to work with this population. This experience both enlightened and empowered me to work and specialize in the areas of head injury and stroke that unfortunately often result in aphasia.

Years later, my best friend’s mother was hit by a car backing out of spot while walking through a parking lot. This incident resulted in a bleed and partial removal of her parietal lobe resulting in aphasia. After working with her and her family, I found that I needed to do more and return to treating and working with this population. That’s when I joined Voices of Hope for Aphasia which gives me the opportunity to work with not only those who have aphasia but their families as well.

What I’ve Noticed Along the Way

I have a master’s degree in speech pathology, and I have a second master’s in psychology (and I am currently a Ph.D. candidate in psychology). The reason I mention that is because what I find is my biggest frustration is the family’s misunderstanding of the condition (no fault of their own, they have never even heard of this before it happens) and the psychological and emotional impact on the entire family.

The patients are often sad; their life as they knew it has been turned upside down. Because of this, the people around them are often frustrated with them as well as the medical system that gives them little support. This has a tendency to create a negative environment for the family, which further frustrates the patient, sometimes leading to depression and withdrawal from friends and family at a time when they need support the most.

There Are Things That Help

At Voices of Hope, I am the STARS coordinator. This program helps those with aphasia to use technology to assist them in their environment. Technology––whether advanced such as a speech-generating device or cell phones with an app like proloquo to go––are often overlooked by therapists for varying reasons.

Today’s technology can assist those with aphasia with basic things. For example, calculating the tip for a bill at a restaurant, helping with word-finding difficulties with visual tools, completing conversations with a speech-generating device; all depending on the type of aphasia and its severity. Using technology in and out of therapy may be the key to independent success.

And I Encourage New Professionals to Learn About Aphasia

Learn about the brain, both physically and psychologically. I know that seems like simple advice, but I do not mean learning on the surface, but learning how the brain works past the lobes of the brain and their basic functions. They need to understand how parts of the brain work with and in conjunction with other parts of the brain.

For example, if I have an injury in the parietal lobe and language processing is affected, what parts of the brain can I use to assist the patient? Additionally, I would tell them to understand that a person with aphasia is not a single unit. They are part of a family and the entire family will need their guidance as they learn and live with this condition.

What People with Aphasia and Caregivers Can Learn From Me

As an SLP, I would want caregivers to understand that I am here to assist them and their loved one, but it is also my job to push their loved one to reach their potential. Often caregivers take over for their loved one, answering for them and assisting them because they love them so much. After some time, the aphasic patient on the outside looks fairly typical and the caregiver becomes frustrated that they are unable to complete the tasks they felt comfortable with prior to the incident. The caregiver has often been misguided by those that do not specialize in this area, so they become frustrated.

For example, my friend’s dad used to become frustrated with his wife because she would read the paper to him but then would say, “I can’t read it.” He would yell at her, saying, “you just did!”

What she meant to say is something closer to: “I can read it, but I don’t understand it.” This is where speech pathologist can come in with education for not only the patient but for the caregiver as well. So don’t leave the caregiver in the lobby.

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