Debi, Linda, Sarah

Aphasia Threads: Debi, Linda, and Sarah

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 Debi, a person with aphasia after a blood clot. Then, we’ll hear from Linda, who is a caregiver for her husband, Roger, who had a stroke. Finally, we’ll hear from Sarah, a graduate student studying speech-language pathology.

Aphasia Threads

Person with Aphasia

Two times clots. Sleeping for 72 days.

Debi

Aphasia Changes Your Life

Writing down words excellent. Speaking is hard, but I’m working on speaking better. Heart is finally open, and G-d is with me all the time.

But There Are Things That Help

Speech therapy for four years is helping. I’m enjoying the gym. Writing is helping. Walking, or gym, or be active. Faith is important.

And Things You Learn Along the Way

Go to a group, go to therapy, and keep on trying.

What Caregivers and Professionals Can Learn From Me

I am trying, but saying it and thinking it is scattered, but I’m trying. Keep trying to help. I get better every time. I’m thinking and listening.

Aphasia Threads

Caregiver

My husband had a stroke on March 20, 2018, which left him with aphasia. Roger was a lucky guy, in that they were able to take care of the clot in the brain and he is now on the proper medication and healthy. However, he has aphasia and that is something that we have to deal with. Not dealing with it is the problem. Too many times I would see him depressed or angry about his affliction, and I would tell him that self-pity is not an admirable quality. Think of the people that have strokes and have physical afflictions that preclude them from walking, dressing themselves, taking a shower, etc. I always believe that you count your blessings, and Roger is making progress in his speaking every day. He is also getting stronger and his decision making has improved. We are thankful.

Aphasia Changes Your Life

Roger was a “high IQ” guy, so it impacted him negatively. He had a lot of trouble adjusting to the fact that he could not say the words he was thinking in his head. He has a lot of trouble with writing and numbers. It impacts our day to day life because I had to find someone to be with him while I am at work. Physically he is fine, but sometimes his decision making is not accurate, and I worry that he might get hurt while I am not home.

But There Are Things That Help

We have a speech therapist that we work with once a week for an hour online. That has been very helpful. I also bought word puzzles and first-grade workbooks that we use for studying at night to build back his skills.

And Things You Learn Along the Way

Understanding that inside the mind of the person with aphasia, nothing has really changed. They understand exactly what you are saying and they know (in their head) what they want to say. They just can’t get it to come out in sentences or in writing.

What People with Aphasia and Professionals Can Learn From Me

Aphasia is really not known to the general public. Roger is not able to communicate with a clerk at a store, or to ask for something when he is out at a restaurant, etc. People’s reactions to this really surprised me. I expected people to be patient and sympathetic to this and help him out, but it has been the opposite. At a Walmart pharmacy, for example, they would not give him a prescription because he could not say his birth date. Why not just ask him for his driver’s license? Why not work with someone that is obviously struggling? I will never understand this.

Aphasia Threads

Professional

Sarah is getting her master’s degree in speech-language pathology.

I am a graduate student getting my Master’s degree in Speech-Language Pathology. I became very interested in aphasia when I first learned about it during my undergraduate studies in Communication Sciences and Disorders. I first worked with individuals with aphasia in the fall of 2017 when I participated in a day-long aphasia group program. Since then, I have worked with many patients with aphasia in outpatient rehabilitation speech-language pathology sessions as well as in other aphasia community groups.

Sarah

What I’ve Noticed Along the Way

I think that the biggest frustration that many individuals with aphasia experience is knowing a word or information, but not being able to verbalize that word or thought. I think it is extremely frustrating to have so much knowledge, but not be able to share that information or thoughts with others easily. I feel for the frustration that people with aphasia experience when dealing with this. I think the biggest joy I observe is when people with aphasia see successes in their ability to communicate, no matter how small. Seeing patients’ progress in communication, both verbal and nonverbal, brings me so much joy.

There Are Things That Help

I really enjoy Semantic Feature Analysis because I believe that it gives people with aphasia structure for how to best verbally describe words that they may not be able to name. I also enjoy the TalkPath News app because it provides current event news in a way that is more easily understood by individuals with aphasia and gives them a good tool to read/listen to important and intriguing news.

And I Encourage New Professionals to Learn About Aphasia

Get involved with an aphasia community group! These groups are great ways to get involved with people who have aphasia, learn about their experiences, and how to be an effective communication partner.

What People with Aphasia and Caregivers Can Learn From Me

I learn from each person with aphasia who I have worked with as much as (if not more than) they have learned from me. Each person with aphasia has a unique experience and I appreciate each person sharing their journey, frustrations, and successes with me.

Aphasia Threads

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.

Comments

One Comment

  • Leslie Hall
    May 19, 2019 at 11:29 am

    I would love to write an article…. I am an occupational therapist and my dad suffered a stroke 3 years ago and has aphasia. I would like to discuss it from a daughters and professional standpoint, as well as my moms (caregivers) perspective.
    How would I go about submitting this?
    Thank you,
    Leslie Hall

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