Aphasia Threads: Cheryl, Danielle, and Julia

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 Cheryl, Danielle, and Julia, three people with aphasia.

Person with Aphasia

I am sharing with you what I do every day, and I think it is helping to slow down the progress of PPA. I know that I am not as good as I was 6 months ago, but again, I do a thing that when I practice every day does help.

What I do every day: For 30 minutes, I exercise with a total of 30 pounds of weights on my ankles and in my hands. While I am exercising, I ask myself to say the words of a variety of things that I have written on several pieces of paper. For example, the names of my relatives and friends, the names of cities and towns in the provinces, the names of vegetables, fruits, streets in the city I live in, body part names, medications my family members take, etc.

After I exercise, I then check the papers of the topics I have spoken while exercising to see if I missed any or pronounced any wrong. Also, for 25 minutes every day, I use a tDCS (transcranial direct current stimulator) (the Brain Driver). While the tDCS is on my brain, the +ve section over the temporal part of my brain that is in trouble, I write down the words that I have recorded on the Voice Recorder on my computer.

Carly Woods, an SLP from Halton Peel Community Aphasia Program, helped me set up the Voice Recorder on my computer. Now I have 26 pages of words recorded/said by me on the Voice Recorder that I have written down. During the 25 minutes, I use 2 pages of them each day.

After I have had the 25 minutes to write down the words I have recorded there from a couple of those pages, I check to see if I have written/defined the words correctly. I do think that helps me to try to keep the spelling and definition of words. I also record each day how many errors I had and have a separate page for those errors to help me review that. As you know, I am very interested to be involved in resources to ultimately help the management of PPA.

Aphasia Changes Your Life

I think about what a wonderful life I have had, but then I will get very sad about there being no cure for me and I will continue to get worse. I want to help my family as well as I can, as long as I can.

But There Are Things That Help

That answer is at the beginning of my comments.

And Things You Learn Along the Way

I would share with them the information I provided for you at the beginning. I would encourage them to speak with others who have a similar problem—to learn from them, to support them, too.

What Caregivers and Professionals Can Learn From Me

Helping aphasia people use the Voice Recorder is very good. Practicing reading, writing, and recalling words is very important.

Thanks for all your support. I wish there was more research being done for PPA.

Person with Aphasia

I had a 3rd baby, and 5 days later, I had my stroke and a seizure. I was in a coma for 1 month. At Craig Hospital, I lived in a wheelchair. At Hope Network, “graduation” to a brace. I am now at home. My Gram bought me a house. I’m semi-paralyzed (nothing right paralyzed).

Aphasia Changes Your Life

Every single day. I still work on getting the right word. My family is the best thing. My mom is an endocrinologist nurse practitioner (diabetes insipidus I have because I had my stroke). My sister-in-law is a pediatric nurse. My husband is a lawyer.

But There Are Things That Help

An “Aphasia Card.” People ask, “what’s wrong?” and I give them the card. It says, “aphasia is caused by a stroke or injury that has affected your brain. It acts by affecting areas of speech and language.” It helps me and them.

And Things You Learn Along the Way

Be yourself! Some people turn to depression (not me). A good counselor will help with that. Also, a good SLP is vital! I had one since my stroke on October 20, 2018. Craig Hospital, Hope Network, and now at the University of Michigan.

What Caregivers and Professionals Can Learn From Me

My needs are SLP, stroke doctor, PT, and OT. I am 34. My stroke occurred on October 20, 2018. (5 days after my son was born.) I was 32.

Person with Aphasia

I had a stroke in 2016, causing my speech problems.

Aphasia Changes Your Life

All bad, as I don’t feel confident enough to speak in case I stumble on words or my brain seems to shut down.

But There Are Things That Help

I have not had any therapy as stroke does not seem to be considered in my area, and not been told of any tools or apps available. The only person I rely on is my husband to speak if I can’t.

And Things You Learn Along the Way

I don’t know as I have not been diagnosed.

What Caregivers and Professionals Can Learn From Me

Reach people like me who may not be so severely speech-impaired, but struggle with day-to-day issues.

How do I get diagnosed even though had rehabilitation for stroke? I have not had any information to help me. Struggling with speech is causing me to withdraw, and especially with COVID-19, I now do not go out much. It seems I need to wear a label to get my condition seen. Many people do seem to understand when you let them know you have had a stroke and struggle to speak, but very often, time is limited and speed is needed.

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