Aphasia Threads: George, Jo, and Tsgoyna

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 George, a person with aphasia, who had three strokes within two weeks. Then, we’ll hear from Jo, who is a caregiver for her father who has primary progressive aphasia. Finally, we’ll hear from Tsgoyna, author of Hope After Stroke.

Person with Aphasia

I had three strokes over the course of two weeks. Two were left-hemispheric and one right. The right hemisphere stroke caused a small amount of neuropathy in my left hand. The left hemisphere stroke caused aphasia.

Aphasia Changes Your Life

My initial aphasia was devastating, a nearly complete loss of vocabulary and speech processing. My family was instrumental in my recovery to date. I live in a multi-generational household. I’m sixty-seven and my grandson is seven. Initially, he read ‘Little Golden’ books and toddler books to me aloud to help me sound out the words and to try to understand their meanings. My partner and the rest of my family ferried me to medical appointments and family gatherings such as holiday get-togethers. The family encouraged me to try to speak with support and patience.

Despite my age, which is normally retirement age, I am something of a workaholic. I am a bi-vocational part-time church pastor and a full-time material logistician for the US Navy. Both of those are vocations that require a great deal of communication and formal speech interaction. I have been incredibly fortunate and following an initial recovery time of about three months and a lot of encouragement at home and in my two workplaces, I have completely returned to my normal work routines. The residual stroke – the neuropathy and aphasia – remain, but are manageable in the home and work environments.

But There Are Things That Help

Because I’m a “geek” – an avid computer user and somewhat technologically proficient – my understanding and communication were handled much more quickly than was my speaking. I use the computer – despite the stroke problems of neuropathy of my left hand and fingers – for a great deal of writing and written communications. That written communication has been something of a bridge from written and tactile communication to spoken communication. More than ever, spell check is my friend.

Additionally, I know the deaf-mute alphabet (and a few signs) and very early on, I was able to share words even before I was able to form them as spoken words.

My spoken communication is still very slightly halted in the characteristic stroke speech pattern, but all of my family, friends, and colleagues actually tell me that they cannot perceive it – it only manifests internally when I’m actually speaking and processing speech.

And Things You Learn Along the Way

Don’t let shame or the enormity of the task of recovery overcome you.

What Caregivers and Professionals Can Learn From Me

All of the tips and techniques that most caregivers and professionals come into play at one time or another. For me, it was the need for those around me to be patient. I have always been a fast speaker, and now when I need to be slow and take time to find or use a particular word, folks needed to be patient, not rush my speech, and let me process a little slower than previously.

Also, all conventional wisdom is somewhat accurate – my thought processing doesn’t seem to be diminished, but the speech process is much slower. As a result in speaking aloud and even in written speech, I lose articles and small words. It’s as if I know them and they are there, but they are ‘understood’ so it’s not necessary to speak or write them. Fortunately, a lot of people who have not had a stroke speak that way, and it’s relatively normal sounding to drop articles, pronouns, and small words on occasion.

Stroke recovery is like the old adage about how do you eat a whole elephant, one bite at a time. Lousy adage aside, stroke recovery is putting one foot after the other… getting through one day after another… I’m not yet there, but my recovery has been nearly miraculous. I just have to be patient and continue with small steps.

Sometimes I’m afraid.

My family and friends believe that I’m completely back, and I really do feel wonderful, but inside my head, the work needs to continue. The words sometimes fail and I know it, but quickly recover. I sometimes have even concerns over how smooth the overt recovery has seemed. Small steps.

Caregiver

My dad has primary progressive aphasia. He was diagnosed four years ago.

Aphasia Changes Your Life

Good and bad, to be honest. I have always been close to my dad, and I miss the old him so much. But it is nice to hear him talk about his childhood, something which he never did until recently. Now he’s focused on his past more.

But There Are Things That Help

Attending Dementia Friends sessions was incredibly useful. It covers all general aspects of all types of dementia, but when dad was first diagnosed, it was very helpful in understanding what he was and would be going through.

And Things You Learn Along the Way

Talk openly about it with your loved one, don’t let it become awkward. You have to know how to help and support them. For example, my dad has trouble finding his words, and in the early days, I asked him if he wanted us to suggest the word he was searching for or if that was patronizing. He wanted us to, then he could continue the conversation, otherwise, he would stop talking as he simply couldn’t think of the word.

What People with Aphasia and Professionals Can Learn From Me

Overall, we’ve been very lucky in the care dad has received. However, we were told by the consultant with the diagnosis that primary progressive aphasia was a ‘slow burner,’ so we thought we had years of dad simply forgetting the odd word. However, his overall deterioration has been very rapid.

You will go through every conceivable emotion, often in a short space of time! You will cry in a shop at hearing a song you used to listen to together. You’ll feel guilty for being impatient when they refuse to brush their teeth. Overwhelmed with grief and exhausted at having to repeat yourself again and again. But then your loved one will make a joke or mention something you assumed they’d forgotten, and you realize they’re still there, deep down.

Professional

Tsgoyna is the author of Hope After Stroke.

More than 25 years ago, my grandmother had a stroke. She was severely aphasic and highly frustrated. I watched the speech pathologist work with her and it was fascinating to me. I’ve always been interested in communication and the miraculous abilities of the brain and body to heal.

What I’ve Noticed Along the Way

I think the biggest frustrations for people with aphasia and their loved ones is their expectations of perfection and their (mutual) mindsets that communication will be impossible. When I work with people and help them recognize what they already know but don’t consciously know they know––that is, all the subtleties of communication that contribute to the whole (all those nonverbal clues such as tone of voice, body posture, gestures, and situational contexts, etc.)––everything shifts and communication is easier. I am most joyful when I see my families empowered to learn, recognize, and implement the skills they already possess to understand that communication is far beyond just words. When they tap into these inner resources, communication is enhanced.

There Are Things That Help

In all honesty, beyond any tool or technique, I think the most fundamental skill in treating aphasia is holding the most deeply rooted belief that communication is possible. As clinicians, we must be aware of each individual’s skill set and choose from an array of tools, whether it’s pictorial stimulation, phonemic self-directed written cues, gestures or associative processing, narrative scripts, or VAST, etc. We have to engage people in communicating what’s important and exciting to them. If we find what’s stimulating to an individual and they light up and attempt communication, we can refine the tools they’re most naturally inclined towards.

And I Encourage New Professionals to Learn About Aphasia

Be more committed to your connection and curiosity about the people you serve versus your protocols, exercises, and apps. Find ways to connect that uplift and bring humor and light. Ask yourself who would you want to communicate with and about what if the situation were reversed? Humbly recognize you are not so much there to teach or treat as you are to help that person regain the confidence and belief in themselves to allow their own natural healing.

What People with Aphasia and Caregivers Can Learn From Me

Aphasia treatment requires time, patience, belief, and a high level of repetition and practice. Unlike physical therapists who manipulate limbs and the evidence of their work and a person’s level of improvement is more straightforward, speech pathologists can’t go into the brain and connect neurons. We must find the spark that causes the PWA’s brain to do the work. We are helping people construct new neural pathways. We recognize improvement is never as fast or as complete as is desired, and we also appreciate the frustration of dealing with the “invisible.” I think it’s important to find the right clinician match for a PWA because the relationship/connection is of paramount importance when working on communication.

Stroke recovery continues as long as you are alive. Seek opportunities to connect and keep trying different stroke support groups or other groups to engage with until you find the right resonance. Know that not all groups are the same. Never give up seeking ways to improve your well-being and live by my motto: Hope is the fuel of recovery … Action is the vehicle.

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