Amy, David, and Colin

Aphasia Threads: Amy, David, and Colin

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 Amy, David, and Colin, three people with aphasia.

Aphasia Threads

Person with Aphasia

I had a stroke.

Amy

Aphasia Changes Your Life

Good.

But There Are Things That Help

UMAP is awesome.

And Things You Learn Along the Way

Keep going.

Aphasia Threads

Person with Aphasia

May 13, 2014, I had a “perfect stroke,” but I did not get anything to recover from the stroke until it was too late. My daughter is a nurse, specializing in heart problems. She left right away to come to the hospital, but she lives 6 hours away. Nothing was done in the meantime. I lost the opportunity to recover.

David

Aphasia Changes Your Life

I used to rely on oral communication, but I miss it now. I am recovering slowly, but it takes years. I miss conversations; not over the phone – in person.

But There Are Things That Help

The conversation is the key ingredient. I read like crazy, text appropriately, but oral fluency is lacking.

And Things You Learn Along the Way

Try anything that works. Aphasia is not an exact science and I would try anything that works. The science is flexible and over time you make adjustments to see what works for you.

What Caregivers and Professionals Can Learn From Me

Listen very carefully. I cannot explain because of the lack of communication. I count you to increase the advancement of speech therapy every day. It is very disappointing when I do not advance. Look at the notes. I rely on you to get the advancement done. It is too short to get to know the person involved with speech therapy.

Aphasia Threads

Person with Aphasia

I am in Brighton, UK. When I was 50 years old (six years ago), I had a stroke and now I have aphasia.

Five years ago I could say ‘yes’ and ‘no,’ and that was it. I had speech therapy every two days for three months, and then another round of speech therapy every week for another six months.

It was a long time to realize what aphasia is and my brain realized I won’t be normal again! My speech is a little bit better, but reading or writing skills are terrible! I’m very lucky that I have voice recognition on my iPhone, so I can do emails and text. It’s not a hundred percent (I used to be very eloquent!), but it’s very good to have it.

Two years ago, I was very bored and couldn’t get the job that I did before, so I decided to do charity work at Say Aphasia. We have for drop-in groups in Sussex. Hove, Worthing, Chichester, and Crawley. And also we have one in Birmingham. Hove was the first, and every Friday morning, there are about 40 people! We do lots of events to get aware of our condition. I do grants to get some money, and I do fundraising as well. Also every three months, I do the newsletter. But we need more drop-in groups in the UK because there are about 350,000 people that have aphasia!

Colin

Aphasia Changes Your Life

I’ve been very positive after my stroke.

But There Are Things That Help

We go to our Say Aphasia drop-in groups. The group is a place to relax, exchange ideas and experiences, and meet people who understand. The drop-in group helps people to make new friends, gain confidence, and practice their speaking, reading, and writing skills without any pressure or judgment.

Colin

And Things You Learn Along the Way

Practice, practice, and practice! Talking, talking, and talking! Be positive but don’t rush!

What Caregivers and Professionals Can Learn From Me

Everybody needs to slow down!

Colin

Aphasia Threads

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