Jorge, Luke, and Kwadwo

Aphasia Threads: Jorge, Luke, and Kwadwo

Welcome to the Aphasia Threads Project, which usually 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. Yet this week, all three stories come from people with aphasia.

This week, we’ll hear from Jorge, Luke, and Kwadwo, three people with aphasia.

Aphasia Threads

Person with Aphasia

I had a stroke about 3 years ago. It caused me to have aphasia and problems with memory. My aphasia has changed my ability to find words to say, read, write, and understand spoken language the way that I used to.

Aphasia Changes Your Life

My aphasia caused me to have to stop working. It makes it harder for me to have a conversation with friends and family. My close relatives understand what I am trying to say and help me. It is easiest to have conversations with my wife and sister because they know me better.

And Things You Learn Along the Way

Aphasia can be frustrating, but try to find help and keep sharing your ideas.

What Caregivers and Professionals Can Learn From Me

I am thankful for caregivers and professionals for helping and for trying to understand.

Aphasia Threads

Person with Aphasia

I am a person with aphasia. I have had 5 strokes in my lifetime and have experienced aphasia for over 15 years. It took me about 3 years to cope with my aphasia. I was a computer expert and had to train myself all over again. Having aphasia is a lifetime of work.

Aphasia Changes Your Life

At first, I was miserable and felt like I was in a haze. I learned to ignore others’ ignorance.

But There Are Things That Help

A computer is very helpful to me. I type out everything in addition to speaking. I had speech therapy for 10 weeks many years ago.

And Things You Learn Along the Way

My advice to others would depend on his/her degree of aphasia. I would tell everyone to keep trying! Nothing happens automatically. I would also tell others to not try and hide their aphasia but let it out.

What Caregivers and Professionals Can Learn From Me

Caregivers and professionals can learn to understand how the person on the other end is feeling. They can continue to listen and ask more pointed questions. Exercise helps! I walk 2 miles every day, which helps my mind and body. I enjoy drinking my coffee and sitting on park benches.

Aphasia Threads

Person with Aphasia

I didn’t know until it was plain to me that I had a kind of disorder. On that day, I was sitting on the couch. Then I saw that my movement was changing. And then I happened to have two of my boys in the house and I told them to call 9-1-1. I was able to tell them to call 9-1-1. At that point in time, I could see my surroundings. When the paramedics came, I was being helped – pushed – to the van, the ambulance.

The paramedics were taking care of me, and I saw that I was being taken to the hospital. I remember getting to the hospital and not much after that. I came awake and saw that I was in the hospital and I couldn’t talk, but I could recognize other people who came to me and I could understand them. I was not very surprised when I could not speak because I had read about stroke, and I knew this was something that could happen. I could not speak at all.

Aphasia Changes Your Life

It does not help me to say what I have to say to other people. Um, I think my friends – I cannot get to my friends. Some relatives who live overseas in Ghana and other places could not hear from me although I used to talk to them regularly. Now I can talk to them, even though my language is still very difficult for me.

But There Are Things That Help

My therapists. Connie, Stacy when I was in the hospital, and Meagan in day neuro all helped me to regain my speech. And it is still improving. The therapists helped by having me read, they helped me to find and shape my words, they were patient and supportive with me.

And Things You Learn Along the Way

I’d advise them to be patient and to take whatever that is being told to them [therapy].

What Caregivers and Professionals Can Learn From Me

Okay, one has to understand that aphasia makes it difficult to understand what you are dealing with and then to be able to understand conversation is almost impossible – please be patient. Learn about speaking problems. It is very hard for me, but I am the same on the inside.

Aphasia Threads

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