Aphasia Threads: Louis, David, and Annalise

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 Louis, a person with aphasia, who had a stroke in 2010. Then, we’ll hear from David, who is a caregiver for his wife, Gail. Finally, we’ll hear from Annalise, a speech therapist in New York.

Person with Aphasia

I had a left partial anterior circulation stroke in May of 2010. The right side of my body was affected ­­­ – I veered to the right when walking. My mouth didn’t work right on the right side. My right arm didn’t have strength it used to. I couldn’t lift my right leg far enough to get my trousers on. But you wouldn’t know it to look at me. That’s where the big difference lies.

Aphasia – it sounds like a C.S. Lewis character in The Chronicles of Narnia – but it means a condition where the stroke has affected the person’s ability to speak, read, or write. You can’t see it. Every person is affected differently by aphasia, and I’ve got problems with two of the three. I can read, but speaking and writing I’ve got to work on. Then there’s memory: I forget words.

I like to refer to my life now as a crossword puzzle: some answers are apparent, some you have to search for. This is ironic because I’ve spent my life talking and writing as a television news reporter, teacher of journalism, and in public relations. I have some things left to do: finish my novel and resume my photography career.

Aphasia Changes Your Life

It changes it in good and bad ways.

But There Are Things That Help

In my hunger to reclaim the words I had known and loved in my life before the stroke, my speech therapist Catherine suggested not only should I do word search puzzles and synonyms, but I should talk more aloud. Most of my life has been speaking aloud on broadcast television and radio news, lecturing in journalism and assorted subjects, even indulging in my secret hobby of phoning talk radio broadcasts with assumed names and adopted accents to espouse some a ridiculous premise.

And Things You Learn Along the Way

I recorded some of it in my blog, Redoable.

What Caregivers and Professionals Can Learn From Me

Aphasia may have taken my speech but not my voice.

Caregiver

My wife had strokes that resulted in Wernicke’s aphasia. She is at home with me.

Aphasia Changes Your Life

Gail does not process verbal communication. With written input, Gail can make yes/no and binary choice preferences. That part is good. Gail does not respond to who, what, when or where questions, which makes conversation difficult. That’s the bad part. Her aphasia comes with perseveration, which can become frustrating. Fortunately, the strokes/aphasia has not affected her memory so non-verbal interactions can be rewarding.

But There Are Things That Help

An iPad and closed captioning on the TV. All communication to Gail is written with only minor gesticulation. We talk to the iPad and it puts speech into words that Gail reads.

And Things You Learn Along the Way

Patience. Also, understand the physical and emotional limitations imposed by the aphasia.

What People with Aphasia and Professionals Can Learn From Me

When people see and interact with Gail, they seem to understand what can be involved in caregiving. Don’t know that it matters what people with aphasia think, it needs to be about them. There seems to be care plans and resources for people with expressive aphasia, but I have found little for receptive aphasia.

Professional

Annalise works at Word of Mouth in New York, New York. She’s a featured affiliate.

When I was in graduate school, I was assigned to an aphasia group. Speaking with the clients and their caregivers, I quickly realized how much I wanted to get involved and help these individuals with aphasia find their voice. My passion to provide compassionate care to individuals with aphasia continues to grow every year.

What I’ve Noticed Along the Way

Frustration(s): For the client to rely on others to do things that he/she once could do independently (e.g. make a phone call, order food at a restaurant, etc). For the caregiver to change the way he/she communicates with his/her loved one in order to improve communication between the caregiver and loved one. Joy: For the client to rediscover a new skill and or way of independence (e.g. utilizing an AAC device to order food at a restaurant). For the client to independently utilize a compensatory strategy to communicate. For the caregiver to communicate effectively with his/her loved one.

There Are Things That Help

Visuals! Visuals! Visuals! A Visual Scene Display app (e.g. Scene Speak) is a great tool for therapy, as you can add personal photos and ‘hotspots.’ A hotspot is an area on the picture that consists of a ‘sound area’ that plays a recorded message when selected to communicate needs. One photo can consist of multiple ‘hotspots’ that can be edited.

And I Encourage New Professionals to Learn About Aphasia

Never assume that if a client is unable to produce verbal speech, that he/she does not understand language or the world around him/her. Compassion and patience will help the client more than you will ever know. Get to know the client and integrate his/her interests, personal goals, and objectives into therapy.

What People with Aphasia and Caregivers Can Learn From Me

I know once I leave the home, the aphasia does not come with me. It is critical that the family and caretaker(s) are supportive, and understanding of what they can do during this time to help their loved one with aphasia. The SLP, caregiver, family, etc is a team effort, and when everyone is consistently on the same page, magic can happen. Completing exercises once a week during a session will NOT produce the same results that daily exercise will. It is imperative to set-up the expectation(s) for the loved one with aphasia to complete the exercises provided. It is crucial for the caretaker to take care of himself/herself. The airplane analogy applies here, ‘if you have to use an oxygen mask, you must put it on yourself first before you can help anyone else.’

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