Aphasia Threads: Randy, Steve, and RP

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 Randy, Steve, and RP, three people with aphasia.

Person with Aphasia

I wrecked on my 9-year-old’s box bike and had two TBIs. I spent a month in the hospital.

Aphasia Changes Your Life

At the most important times, my brain locks up. I know all the words I’m trying to say, but when I really need them… poof, they are gone. Relationships are all different. Some folks I have to ask to just chill and let me work it out. Some are patient and helpful. Some just want to answer everything for me. I’m good with it all.

But There Are Things That Help

I have used my love of music on a daily basis for the last 4 years to try to get my brain better. One band in particular which I loved before the accident I have listened to daily and have gotten the ability to sing most of the song again. I think it has been a great daily workout.

And Things You Learn Along the Way

You can and you will get better. There’s no stopwatch for the recovery, but be patient and work hard and you will see improvements.

What Caregivers and Professionals Can Learn From Me

It’s so freaking frustrating. Not for you, for us. We are still the same folks we were before. Just need encouragement and patience and positivity. Never underestimate anyone. Not yourself, not your significant other, not your parents. We can all do better than we think we can. Find current happiness and work with that as much as possible. The other stuff will come.

Person with Aphasia

I am a stroke survivor, disabled physically, and currently unable to speak much. My story started with me being unable to make a sound. I used to communicate with a combination of sign language, a letter board, and wishful thinking. The letter board was very frustrating if the person who was using it was unable to spell because of their dyslexia!

Aphasia Changes Your Life

People, especially strangers, tend not to give you enough time. It is quite difficult to get across to a stranger what you want, so if possible, you leave it to someone else. This doesn’t help with independence! The main problem I encounter with people that I know is that I get frustrated when they don’t understand me.

I used to forget that the noise I made was very different from the words in my head which were clear! I am getting a bit better now though, I think. It was perhaps more frustrating because I was able to understand everything, knew what I was thinking, but I couldn’t be understood.

Later on, when I felt ready, I could make a noise in a sitting position and eventually standing up. Then, after a while, I was able to speak in my way with anyone who was able to lipread or understand the noise that came out of my mouth.

But There Are Things That Help

I was lucky enough to get the Grid 3 system and although slow, I was able to communicate without any frustrating misunderstandings. I think that the Grid 3 system, which was operated by a thumb switch at first, and then I moved on to a touch screen, helped me a lot because it was both a means of communication and exercise for my good hand and arm. I relied on the Grid for nearly two years and still have it with me in case I have trouble with my words.

And Things You Learn Along the Way

Patience, perseverance, and practice will help in the end.

What Caregivers and Professionals Can Learn From Me

Everyone is different. Remember that someone with aphasia might not be as quick as you! Please give us time. Above all the other good things that you do, be patient, patient, patient.

Person with Aphasia

Four strokes. Aphasia.

Aphasia Changes Your Life

Worse with each stroke. Getting better. Relationships––hard at first. Wife good, son good.

But There Are Things That Help

Phone. Many apps. Constant Therapy. Facebook.

And Things You Learn Along the Way

Will get better slowly.

What Caregivers and Professionals Can Learn From Me

Slow progress, keep going. Progress goes up and down. Going up.

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