Aphasia Threads: Amy, Lynne, and Haley

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 Amy, a person with aphasia, who had a stroke in 2015. Then, we’ll hear from Lynne, who is a caregiver for her daughter. Finally, we’ll hear from Haley, a graduate student helping with an aphasia support group.

Person with Aphasia

I had been having severe headaches for 1 week before my stroke. I had a stroke on July 5, 2015. I had just gotten out of the pool and was drying off. I wasn’t able to talk and I kept running into things.

My husband thought I was mad at him. He called 911. I went upstairs to put clothes on and then had a seizure. I didn’t remember anything from the time I had a seizure until I got to the emergency room.

I had a clot. My head was swollen like it was going to blow up, so I was transferred for surgery to a hospital equipped for it. I remained there for 1.5 months, then went to an inpatient rehabilitation hospital for 8 days.

I didn’t want to be there, so I went home. So then I had occupational, speech, and physical therapy every day, Monday – Friday, for 6 weeks at a Neuro Recovery Center. After that, I had outpatient speech therapy for a few months. Then I attended the Neuro Recovery Center program a second time for 8 weeks.

At the end of those 8 weeks, I was told about the Brooks Rehabilitation Aphasia Center. I applied to the Brooks Rehabilitation Aphasia Center program, but there was a 4 month waiting period. I started after that and have been attending for 14 months.

Aphasia Changes Your Life

Daily Life – I have a problem reading, speech, writing. It’s hard to do every day things like when I’m trying to cook and read ingredients – it’s frustrating, difficult, takes longer. Even just trying to have a conversation can be hard depending on who you’re talking to.

Even if you want to work, sometimes you can’t do the work out you want because of restriction. Using a computer – I have to learn how to reuse my computer. Typing is difficult because of the size of the font, finding the letters on the keyboard, and my double vision.

Relationships – I don’t know anything good about it as far as my family. It’s stressful for myself and others. Because you have the problem that you think you’re saying something correctly, but other people tell you you’re not. At home, I don’t talk as well as when I’m at the Brooks Rehabilitation Aphasia Center.

But There Are Things That Help

When I can’t come up with a word, I use Google all the time. I can describe something in a Google search for it, or if I’m writing the word and it looks funny or is wrong, the search will correct spelling errors. It helps me when I am helping my child with homework. Also Drawing apps and the “Move the Block: Slide Puzzle” app by BitMango.

And Things You Learn Along the Way

Don’t give up. You have to want it. Have to want to get better. It’s the only way. Just push a little bit, each day it gets easier. Instead of saying no and thinking negatively (it’s easier to think that way), but it doesn’t help you or your family. Try replacing it with one yes or one “I can” or “I’ll try,” something positive, and it will start helping you get better.

What Caregivers and Professionals Can Learn From Me

People just have to slow down. If you don’t slow down, I miss the whole conversation because I’ll get pieces of it, and I don’t know that I missed parts of it. Then I’ll be frustrated and not want to continue listening or talking. I have a great neurologist and primary care physician who cares about me. They don’t rush through my appointments and spend time with me. It makes me feel at ease like they do care and they do.

It’s so hard. I always think of things later. Like when you go to the grocery store and you know you need something, but you can’t remember what it is until you get home and open the fridge and realize it was lemon juice! That’s what I needed! It’s like that with talking all the time.

Caregiver

My 31-year-old daughter had a stroke on May 21, 2019. She had a hemorrhagic stroke on the left side and had a craniotomy to help the swelling. The bleed was the size of a tangerine and caused a 5 cm midline shift. I left my job and home to drive to the city she lived in and have not been back since. She is now walking and mostly independent but suffers from aphasia, which affects her reading, spelling, and speaking on command.

Aphasia Changes Your Life

Being her mother and only caregiver, it’s brought out more mother/daughter dynamics when we can’t communicate.

But There Are Things That Help

My daughter can write but not read, and she has a hard time speaking certain words. We use a whiteboard and I carry a notebook around for those tough times.

And Things You Learn Along the Way

Always patience and have thick skin. Remember that they are using the only words they can get out to describe you or a situation. So if words seem harsh or hurtful, take a breath before responding or getting your feelings hurt.

What People with Aphasia and Professionals Can Learn From Me

That you know your loved one better than they do. So even though you may come across as bossy or appear to be insinuating they know more than you, they don’t, they just know the survivor better and should be working as a team, not adversaries in their recovery. Being a mom, I know what my daughter is most likely trying to communicate.

As a caregiver, I have experienced grief and loss, but also joy and celebration! It is much easier with the support of other caregivers. Try not to take on too much!

Professional

In grad school, I participated in the Connect Aphasia Now support group.

What I’ve Noticed Along the Way

Frustrations are seeing people frustrated. Joy is everything else! Facilitating communication and finding what is functional for each person. All of the tools in the toolbox. Experimenting with them. And finding what works for that individual.

There Are Things That Help

Patience and keep trying!

And I Encourage New Professionals to Learn About Aphasia

Find that joy and passion again.

What People with Aphasia and Caregivers Can Learn From Me

We are here to help!

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