Making Life Bigger than Aphasia

At some point during their recovery, stroke survivors and caregivers realize that the world doesn’t reshape itself to fit their needs. Aphasia may have to be worked around, despite the best efforts of survivors and speech-language pathologists.

At some point during their recovery, stroke survivors and caregivers realize that life goes on and they have to fit into it. The world doesn’t reshape itself to fit their needs. Aphasia is a deficit that may have to be worked around, despite the best efforts of survivors and speech-language pathologists.

Conventional speech-language therapy focuses on improving language by practicing saying words and forming sentences, or trying to. That approach has served many survivors with aphasia. However, insurance reimbursement for speech-language therapy is limited to about two months, which is not enough. Even after therapy, some people with aphasia don’t fully recover language skills.


Nina Simmons-Mackie, Ph.D.

“Aphasia is often a ‘chronic’ disability in which language can improve, but does not recover,” said Nina Simmons-Mackie, Ph.D., professor of Communication Sciences & Disorders at Southeastern Louisiana University in Hammond. “This leaves the person with aphasia with a chronic communication disability. Chronic aphasia can make it difficult or impossible to participate in important daily life situations.” For many people with aphasia and their families, aphasia dominates their daily existence and becomes a barrier to getting on with life.

To improve the lives of survivors with aphasia, some speech-language pathologists have developed the “Life Participation Approach to Aphasia” (LPAA). “This form of service delivery differs substantially from more traditional aphasia management,” Simmons-Mackie said.

These programs emphasize group activities that allow survivors with aphasia to communicate and share their experiences with each other. The groups may be book clubs, exercise and yoga classes or theatre programs that are more enjoyable and entertaining than traditional speech therapy.

“The goal is to build confidence, skills and opportunities to get on with life in spite of aphasia, and at the same time practice communicating with other people,” Simmons-Mackie said. The Aphasia Institute in Toronto refers to this as “making Life bigger than Aphasia.”

“The goal of LPAA is to make life the focus and minimize the influence of aphasia.”

A group of women who instituted LPAA programming at 13 centers around the country last year formed an umbrella organization called AphasiaAccess to provide continued support for those with aphasia. They collaborate to streamline the post-rehabilitation, long-term treatment process. (For a list of the centers visit Although each center offers a different mix of programs, all emphasize interaction and participation. The AphasiaAccess website ( will be launched this fall.

Darlene Williamson

Darlene Williamson, a member of AphasiaAccess, is the Executive Director of the Stroke Comeback Center in Vienna, Virginia, which offers more than three dozen groups each week. “Our groups focus on the four primary modalities of listening, speaking, reading and writing,” Williamson said. “We also have cognitively based groups, motor speech groups and technology groups.” They also have groups with a fitness component that work with balance, mobility, eye-hand coordination, and a yoga class. Because the center is located in town, members can practice their communications skills at nearby restaurants, shops or the bank. “Members of our center determine their goals and their focus and can create a customized rehabilitation program from among the groups we offer,” Williamson said.

“The goal of LPAA is to make life the focus and minimize the influence of aphasia,” Simmons-Mackie said. “Aphasia doesn’t go away, but life engagement becomes the focus.”

Research indicates that those who live successfully with aphasia engage in meaningful activities and interact with other people, coping positively with their disorder. “LPAA aims to focus explicitly on these goals, rather than assuming that improved language processing will automatically result in improved participation in life,” Simmons-Mackie said.

A key principle of LPAA is to have participants set an explicit goal of improving their participation in life. Another key element of LPAA is changing the environment around the person with aphasia, not only changing how the person with aphasia communicates. Simmons-Mackie likens it to trying to communicate in a foreign country without speaking the language. Native speakers can interact successfully by using drawings or gestures, being patient and slowing down. “In LPAA the emotional consequences of aphasia are considered as important as the linguistic consequences,” Simmons-Mackie said. In other words, how someone feels about themselves and about communication is important for re-engaging in life.

“Progress is determined by an individual being able to communicate with family, friends, and the community in general.”

Another key principle of LPAA is that aphasia intervention should occur any time the person needs services, not simply for two or three months after stroke. Changing life situations may affect communication needs, so centers that are part of AphasiaAccess are open at any time to people with aphasia and their families.

For Williamson at the Stroke Comeback Center, this approach involves the survivor’s entire support system continuing their support for as long as the person wants assistance, empowering the survivor to establish real-life goals that lead to re-engagement in their community, workplace and family.

Survivors set individual goals to measure their success. “Progress is not necessarily measured in particular speech changes,” Williamson said, although they track such changes when they occur. “We use the term ‘communicate,’ rather than speak or verbalize. Progress is determined by an individual being able to communicate with family, friends, and the community in general.”

AphasiaAccess speech therapists keep cost in mind when formulating their programs. Group programs cost less than individual therapy. Several of the centers are nonprofits or are funded by philanthropies. Each center charges tuition, but keep their prices affordable and often offer scholarships to those who cannot afford it. They also do fundraising to lower program costs.

“Our members realized that the services they were offering not only represented a paradigm shift in the management of aphasia, but they were ‘life changing’ for people with aphasia,” Simmons-Mackie said. “The traditional healthcare system did not provide what was needed and often had difficulty even accommodating this type of programming. Service providers and researchers wanted to share their vision and their growing knowledge base and advocate for this form of service for people with aphasia and their families. Also we wanted to learn from each other. Prior to our founding there were no organizations that made it easy for LPAA providers to get information or share their own experiences.”


Lisa Reynolds of Pecos, Texas, was 45 when she had a stroke in December 2003 that partially paralyzed her right side, impaired her vision and left her with expressive aphasia. She had traditional speech therapy for six months and then became a member of the Aphasia Center of West Texas (ACWT) in Midland. She attended programs five days a week for months, which required recruiting a pool of drivers to make the 200 mile round trip with her because she cannot drive.

Speaking with the mother of four, it is clear she still has aphasia, but it is equally clear she has confidence and enthusiasm for her life. She names off the classes she has taken – “computer lab, cooking, exercise, Bible study, current events where we talk about things over coffee, playing board games.” She has learned to write with her left hand and to maximize communication by asking others to ask her yes-no questions. Says her husband Randy, an attorney: “She is more confident, more independent. She is willing to talk to people, to go shopping.” He is obviously proud of his wife’s accomplishments.

When we talked, Lisa was returning to ACWT the next week. Even after 10 years of attending, she couldn’t wait: “I’m excited to see my friends but also getting something done. It gives so much more than speech improvement. It’s the overall balance that this brings into your life. It has so much to offer; it’s focused on speech but not just speaking.”

“A stroke turns entire families upside down,” Randy adds. “ACWT does a great job addressing issues that affect the survivor directly, but it also provides assistance to the survivor by providing much needed resources to the survivor’s caregivers and family.”

Thoughts of a Founding Mother


Kathryn Shelley | Founder; Marketing & Development Director
Aphasia Center of West Texas

Everything about my father’s identity, how he saw himself and how others viewed him, came to a crashing halt following his stroke and aphasia. It would be months of heartache, frustration and hopelessness before I heard Aura Kagan, Ph.D., explain the Life Participation Approach to Aphasia. I felt my whole body relax, knowing I had finally found a plausible, on-going and life-affirming model of service for my dad and others like him. Now, I’ve had the honor of watching hundreds of survivors enter the doors of the Aphasia Center of West Texas. Over and over, I’ve witnessed how they grab the lifeline of friendship, communication strategies and empowerment the Life Participation Approach provides.

I jumped at the chance to be a “founding mother” of the AphasiaAccess network because I want the LPAA model of service to spring up in cities across North America. From the moment someone enters a hospital on a gurney to ordering coffee at the local coffee shop, I want people with aphasia to find healthcare professionals, business owners and community leaders who know how to make life accessible again. AphasiaAccess will be the go-to resource to learn exactly how to do that.


When talking to Bob Mayer, 55, of Tenafly, New Jersey, it is obvious he has aphasia, but what he clearly doesn’t have is fear or reticence. He may search for words, but he doesn’t search for the confidence to speak. After an ischemic stroke at age 40, he says “the symbol system broke down.” Bob has been coming to the Adler Aphasia Center (AAC) in Maywood, New Jersey, four days a week for 10 years.

In that time, he has participated in all the center’s four dozen classes, which change each semester as members ask for new things. “My favorite is drama club. We ad lib a lot of lines,” he said laughing. “We can’t remember everything.” The drama group produces a condensed version of a Broadway musical each August.

“Being in group helps — you realize we’re all in this together,” he said. “It adds quality of life. Builds confidence. Gives peer support.”

Bob participates in a jewelry-making group called Something Special. Each Friday, members sell their creations at retirement center gift shops. Their jewelry sales in four years have raised more than $150,000 for AAC. “Plus it (working in the gift shops) builds self-esteem and teaches others about aphasia,” Bob said. “People know stroke, but they don’t know about aphasia.”

AAC members educate first responders and medical residents in their community about aphasia and how to interact with people who have it.

“I’ve come here for 10 years and people are down at first but their whole attitude changes because they are talking and interacting, even if just with gestures. Amazing the changes that you see. I pay a small fee to come here and it’s well worth the money. Being part of AAC is where I want to come for recovery. It’s happy, lots of hope and help here.”

This information is provided as a resource to our readers. These tips, products or resources have not been reviewed or endorsed by the American Stroke Association.

Stroke Connection. Get the app for free.


- Advertisement -

This link is provided for convenience only and is not an endorsement or recommendation of either the linked-to entity or any product or service.

AD. Amramp Making Life Accessible. 20 years. Be accessible to everyone. Protect your clients & their caregivers from slip and fall accidents. 888-715-7599. Click here for more info.

AD: American Stroke Association-American Heart Association logo. Did you know that about 1 in 4 stroke survivors have a second stroke? Learn more.


Ad: American Heart Association logo. American Diabetes Associaiton logo. Know diabetes by heart logo. Living with diabetes? Inspire others. Submit story button.


AD. American Heart Association logo. Know your blood pressure numbers. And what they mean. Gain Control.  Learn more.


Ad: American Heart Association Support Network. Facing recovery after a stroke or heart disease diagnosis can be overwhelming. You are not alone. Our community is here for you. Join us today.


Edit ModuleShow Tags

Stroke Rehabilitation

Making the Best Decisions at Discharge After Stroke

The type of rehabilitation and support systems a survivor receives at discharge can strongly influence health outcomes and recovery. In this, the first part of a two-part series on stroke rehab, we offer guidance for the decision-making process required when it’s time to leave the hospital.

What to Expect from Outpatient Rehab

After stroke, about two-thirds of survivors receive some type of rehabilitation. Outpatient therapy may consist of Several types of therapy. Whether a patient is referred to inpatient or outpatient therapy depends on the level of medical care required.

What to Expect in Stroke Rehab

Following a stroke, about two-thirds of survivors receive some type rehabilitation. In this second of our two-part series, we want to alleviate some of the mystery, fear and anxiety around the inpatient rehab part of the stroke recovery journey.
Edit ModuleShow Tags Edit ModuleShow Tags

AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Caregiver Guide to Stroke

The Caregiver Guide to Stroke is meant to help caregivers better navigate the recovery process and the financial and social implications of a stroke.

Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try

Tips for Daily Living Library

This volunteer-powered library gathers tips and ideas from stroke survivors, caregivers and healthcare professionals all over the country who’ve created or discovered adaptive and often innovative ways to get things done!

Stroke Family Warmline

The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear.

Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.
Edit ModuleShow Tags

Stroke & Parts of the Brain

When Stroke Affects the Occipital Lobe

Our occipital lobe, the smallest of the four lobes of the cerebral cortex, controls how we visually interpret our world.

When Stroke Affects the Cerebellum

The cerebellum contains 80 percent of our neurons. Its job seems to be to make things better. We talked with neuroscientist Jeremy Schmahmann about how stroke affects the “little brain.”

When Stroke Affects the Parietal Lobe

The parietal lobe helps us make sense of sensory information, like where our bodies and body parts are in space, our sense of touch, and the part of our vision that deals with the location of objects.

When Stroke Affects the Frontal Lobe

Of the four lobes that make up the cerebral cortex, the frontal lobe is the largest. It plays a huge role in many of the functions that make us human — memory, language, movement, judgment, abstract thinking.

When Stroke Affects the Temporal Lobe

The temporal lobe has several functions, mainly involved with memory, perception and language.

When Stroke Affects the Brain Stem

The brain stem serves as a bridge in the nervous system. It sits at the top of the spinal column in the center of the brain. When a stroke happens there, it can cause a few different deficits and, in the most severe cases, can lead to locked-in syndrome.

When Stroke Affects the Thalamus

The thalamus can be thought of as a "relay station," receiving signals from the brain’s outer regions (cerebral cortex), interpreting them, then sending them to other areas of the brain to complete their job.
Edit ModuleShow Tags


Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

Everyone has a reason to live a longer, healthier life. These stroke survivors, caregivers and others share their 'whys'. We'd love for you to share yours, too!

Everyday Survival

Practical tips and advice for day-to day living after stroke.

Life At The Curb

A unique perspective on survival by comedian and stroke survivor John Kawie.

Simple Cooking

Cooking at home can be a daunting task, but a rewarding one for your diet and lifestyle (and your wallet). Making small changes in your diet is important to your heart health. Here are simple, healthy and affordable recipes and cooking tips.

Helping Others Understand

Stroke affects people differently and many of the effects of stroke can be complicated. Helping friends and family understand how a stroke is affecting a survivor can help everyone involved.

Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!