Joshua, Annette, and Rochelle

Aphasia Threads: Joshua, Annette, and Rochelle

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 Joshua, Annette, and Rochelle, three people with aphasia.

Aphasia Threads

Person with Aphasia

I had a tumor on my brain that got bigger and bigger until the aphasia began. I didn’t know about it.

Aphasia Changes Your Life

Well pre-stroke, I always thought about the future or the past, but now I have this day and that’s it. I was an executive chef, so I worked 60 hours a week, but now I am on disability with speech therapy, therapy, and volunteering at the local Woods Humane Society each day.

But There Are Things That Help

My mom and I play Scrabble every week. I drive and listen to music. Anything and everything just to get out of the house.

And Things You Learn Along the Way

I would say that after 6 months to a year, there will be no getting back to normal, but I will say the new normal is worth it! The new normal is hard every day but spiritually worth it.

What Caregivers and Professionals Can Learn From Me

About 3 or 4 months into my aphasia I just wanted to be seen—not just physically but emotionally as well. It’s my brain and it is not intelligence but speech.

Aphasia Threads

Person with Aphasia

I had a stroke on April 10, 2004. My right leg and right arm is paralysis. The right leg has a brace.

Annette

Aphasia Changes Your Life

I’m learning to talk and read again. It’s going great!

But There Are Things That Help

I used the computer.

And Things You Learn Along the Way

Get in touch with your family and your support group.

What Caregivers and Professionals Can Learn From Me

I’m going to UCF Aphasia Family for 14 years. It’s been great! NEVER GIVE UP!

Annette

Aphasia Threads

Person with Aphasia

I had a stroke 12 years ago when a blood clot traveled from my leg through a patent foramen ovale in my heart to the left side of my brain. I have aphasia and some right-sided weakness.

rochelle

Aphasia Changes Your Life

I had to quit working. I am an attorney and could not practice after my stroke. I can’t drive as far as I used to, and have trouble reading and writing. I need to read with a Kindle text to speech and use dictation to write. People that don’t know me have trouble understanding me sometimes. My relationships are still strong. My husband, family, and children and friends are still close. So my relationships have not been affected.

But There Are Things That Help

Using dictation on my iPad or iPhone.

And Things You Learn Along the Way

Keep talking. You will improve over time. Don’t listen to anyone that says you won’t get better.

What Caregivers and Professionals Can Learn From Me

People are all different and have different strengths and weaknesses. Keep talking and learning and you will get better, even 12 years after your stroke.

12 years ago, I had a stroke and now I have aphasia. I am still getting better because of friends that have aphasia, my friends I have known for years, teachers at a class I go to, speech therapists, my daughters, and, of course, my husband. For about a year, I have used dictation and that has helped.

I heard about dictation from one of my friends who has aphasia and I like it. If you have a phone or iPad you can look to see if you have dictations. Sometimes the dictation feature doesn’t quite work because I say something not quite right. Sometimes when I use dictation, it will hear me say a bad word even though I didn’t mean it. So then I have to go and change it. But all in all, it helps. For example, if I want to go to a restaurant and can’t type the name, I can say it and it is there on Google. If I cannot write down “Alaska,” I can say Alaska and it appears. I have trouble writing the words Labor Day, but if I use dictation then I can see it. I can use dictation to talk in complete sentences, write letters, and do emails. If you have aphasia you should try it!

Aphasia Threads

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