Living with Aphasia Life After a Stroke What Is Aphasia?

LIVING WITH APHASIA LIFE AFTER A STROKE WHAT IS APHASIA?

Aphasia is difficulty with:

Di culty Di culty • coming up with words, Understanding Reading

• saying what you mean, Di culty Di culty Speaking Writing • reading as fast or as easily as you used to

• knowing how to spell words that you used to be able to write APHASIA Language Disability Caused By Brain Injury • understanding conversations or

• following what people say to you.

Aphasia occurs when a part of your brain that is required for these abilities is damaged due to a stroke, other brain injury, or neurological condition. ABOUT If you are having these communication challenges, 40% you are not alone! of people who have strokes About 40% of people who have had a stroke experience Aphasia. experience aphasia. These communication problems may make it difficult to understand what the doctors are telling you. You may have a hard time asking This is approaching questions about what is happening to you. You might be asked to sign forms or give your permission to PEOPLE things even though it is difficult for you to understand 2M or write your name. in the United States alone. About 2 million people in the United States are living with aphasia. But, the number of people affected by aphasia is much bigger than that, because each one of those 2 million people have spouses, family members, and friends who are also living with aphasia. TIPS FOR USING THIS GUIDE We have written this guide to help you and your loved To help a person with Aphasia understand this guide: ones understand what is happening and what to expect during rehabilitation and beyond. A B C

www.vohaphasia.org 2 Read each line slowly, using a plain card or Pause frequently. Look at You can check to see if the person with your ﬁnger to help follow along. Hearing the graphics together and Aphasia is understanding the information and seeing words, at the same time, helps discuss them. by using the true-false questions that people with aphasia understand. are provided in the sidebars. ABOUT 40% of people who have strokes experience Aphasia.

This is approaching 2M PEOPLE in the United States alone.

TIPS FOR USING THIS GUIDE To help a person with Aphasia understand this guide:

Retrieve A B C sounds

See the dog Read each line slowly, using a plain card or Pause frequently. Look at You can check to see if the person with your ﬁnger to help follow along. Hearing the graphics together and Aphasia is understanding the information and seeing words, at the same time, helps discuss them. by using the true-false questions that people with aphasia understand. Say the are provided in the sidebars. word “dog” Know it’s a dog

Think of the word “dog”

What causes Aphasia? primary motor cortex primary somatosensory cortex

Broca’s area inferior parietal lobule Aphasia occurs when a part of the brain that is needed primary visual for communication is not operating normally. cortex

For most people, the left side of the brain is the most important for language functions, like understanding words, coming up with words, reading words, and spelling words. There are several different areas on the left side of the brain that contribute to these abilities. Wernicke’s area

primary auditory area

Retrieve sounds

See the dog

Say the word “dog” Know it’s a dog

Think of the word “dog”

primary motor cortex primary somatosensory www.vohaphasia.org 3 cortex

Broca’s area inferior parietal lobule

primary visual cortex

Wernicke’s area

primary auditory area What causes Aphasia? (cont’d)

A stroke is one of the most common causes of aphasia. A stroke is when the flow of oxygen-rich blood to the brain tissue is disrupted. Blood flow in the brain can be disturbed in one of two ways. First, a clot or build-up in the blood vessel can cause a blockage. This is referred to as an ischemic or thromboembolic stroke. A second way for brain tissue to be deprived of oxygen in the blood is when a blood vessel bursts. When this happens, it is like the oxygen in the blood taking a “detour”, so it does not get to a certain area of Ischemic the brain. This is called a hemorrhagic stroke. An ischemic stroke is due to an obstruction within a blood vessel supplying Other kinds of brain injuries or diseases can also cause aphasia “Well, I want over there to the prable area and blood to the brain. then it was really dierent and I couldn’t really if they“Go...Store...You?” affect the functioning oftell the what itimportant was I mean I just don’t language know.” areas in the brain. Many neurological conditions can cause difficulty with word-finding, because so many parts of the brain are needed to come up with different kinds of words.

Another type of aphasia is called Primary Progressive Aphasia (PPA). This kind of aphasia is NOT caused by a stroke or brain injury. Primary Progressive Aphasia is caused by a slow degeneration of brain tissue and function. A person is diagnosed Hemorrhagic with PPA when there are problems saying what you want to say A hemorrhagic stroke that have slowly gotten worse over time. A neurologist will conduct happens when a weakened blood vessel ruptures and tests to rule out other causes. bleeds into the brain.

UNDERSTANDING CHECK

True or False: True or False: True or False: Aphasia is always It is possible for someone There are two dierent caused by a stroke. with Aphasia to look at a types of strokes. word, know what it means, but not be able to say it out loud.

www.vohaphasia.org 4 WHAT ARE THE SUBTYPES OF NONFLUENT AND FLUENT APHASIA?

FOUR (4) SUBTYPES OF FOUR (4) SUBTYPES OF NONFLUENT APHASIA FLUENT APHASIA

1 Broca’s Type Aphasia 1 Wernicke’s Type Aphasia

A person with Broca’s type aphasia has: A person with Wernicke’s type aphasia may: • Difficulties with grammar in speaking, • Say words that are not really words understanding and writing • Be unaware of their difficulties • Difficulties with “little words”, like prepositions, • Have difficulty repeating words, phrases, articles, pronouns or sentences • Difficulty repeating words, phrases, or sentences

2 Transcortical Sensory Aphasia 2 Transcortical Motor Aphasia A person with Transcortical Sensory aphasia may: A person with Transcortical Motor aphasia has: • Use many “empty” words, such as “stuff”, “thing”, • “Islands of fluency”: longer phrases even though “that one” most speech is one or two words at a time • Ability to repeat words, phrases, and sentences • Ability to repeat words, phrases, and sentences

3 Conduction Aphasia 3 Mixed Aphasia A person with Conduction aphasia may: A person with Mixed aphasia: • Make errors with sounds in words • Can say some content words • Have difficulty repeating words, phrases, • Does not understand everything as well as or sentences it seems

4 Anomic Aphasia 4 Global Aphasia A person with Anomic aphasia has: A person with Global aphasia has: • The mildest form of aphasia • Difficulty in all areas of language: speaking, • Difficulty finding words understanding, reading, and writing • Often has apraxia as well

www.vohaphasia.org 5 WHAT KIND OF APHASIA DO YOU HAVE?

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2 Aphasia can also be mild. MILD The person with aphasia can 3 Someone with mild aphasia may be able to express express themselves, but has themselves, but get stuck coming up with words they difficulty with words, reading want to say. and writing.

4 If you’re not sure whether you have aphasia or not, you should be tested by a qualified speech-language SEVERE pathologist. One place to find a certified speech- language pathologist is at www.asha.org/profind The person with aphasia is almost unable to understand what other people say, and has very limited ability to express themselves. WHAT HAPPENS NEXT?

What are different types of Aphasia therapy? After a person has a stroke with aphasia, they should receive therapy from a qualified speech-language pathologist. Most countries around the world recommend that all persons with aphasia receive aphasia therapy. You can get more information about International Best Practices for Aphasia on this website: www.aphasiaunited.org

TYPES OF APHASIA THERAPY

Life Participation Approach to Aphasia (LPAA) Focused on doing activities that are most important to you

Targets people, places and things around you to make you successful Getting back to doing things Impairment-Focused in your life Focused on speciﬁc skills

Examples: Naming pictures, spelling words, practice saying words

www.vohaphasia.org 7 How do I know if the therapy I’m If you have had therapy in the past, and it ended, you getting is the best therapy for me? may still be appropriate for additional therapy. If you have changed in your abilities or your medical status, your insurance may cover additional therapy. Ask There are some important questions you can ask your your doctor to support you by writing a script/referral for speech-language pathologist about your therapy that speech therapy since you have changed since the last will help you know if you are getting the best therapy round of therapy. for you. Also, remember that therapy is available in other ways. 1) Does this therapy have scientific evidence? For example, university clinics may offer Some therapists use workbooks and other very therapy for discounted rates or provide other groups basic types of “stimulation” therapies that have little that can help you continue to improve. Also, if you have evidence of being effective. You deserve better. Don’t the funds you can private pay for services settle for Xeroxed workbook pages. Therapy that has outside of your insurance benefits. been researched to have the best outcomes is what you want.

2) What will this therapy help me do? How can I make my therapy Don’t sit in therapy putting up with basic drills or other matter in my daily life? activities when you don’t understand what it’s leading to. Your therapist should be able to explain clearly to you what goals you are working towards. If you are not Practicing every day on language skills will only satisfied, ask for a different therapist. be beneficial if you can use those skills in real activities that you want to do. 3) Do you feel comfortable with your therapist? If after a few sessions, you’re not comfortable with your At Voices of Hope for Aphasia, we offer groups in therapist, you need to talk about it or request a different our “Living with Aphasia” program where people therapist. The relationship between the therapist can practice the language skills they’ve been and the patient is a critical part of the work that is working on in conversation and other activities. accomplished during the therapy time. For example, do you want to discuss travels you’ve made or travels you’d like to make? Do What should I say to my doctor you need a little extra time and support to do it? about getting therapy? That’s what we do in our groups, which are great accompaniments to your therapy. Even if you are not in therapy, groups like ours help you continue If your doctor has not recommended therapy for you, to make progress. you should ask why. Best Practices in Stroke Care in the United States and internationally, recommend therapy. Stand your ground and say, “Speech therapy is recommended for people with aphasia. Please write a script/referral for me for speech therapy.”

www.vohaphasia.org 8 WHAT SHOULD FAMILY MEMBERS DO?

What is the best way for family How important is it for us to learn members to help? communication techniques? Family members of a person with aphasia walk a tight- It is very important for family members to become rope between helping to ease frustration and helping to skilled communication partners. There is a training gain new skills that lead to independence. called Supported Conversation for AphasiaTM that science has shown is an effective way for caregivers It’s not easy, or not even possible, to predict exactly to learn to support effective communication in when you should help and when you should let the aphasia. We teach this approach in our two-day person try on their own. But, it is important to let the family-focused workshop, “I have aphasia – TM person with aphasia try on their own. Try saying, “Would now what? ”. you like some help?” You don’t have to help the person who is having trouble speaking right away. People who When you support communication at home in the have aphasia may take 10-20 times longer to come up right ways, it actually helps the person with aphasia continue to improve and recover. If you ignore this with a word (10-20 seconds, instead of 1 second). It’s critical element, the person with aphasia is denied an great to “count to 10”, and then ask if the person with important opportunity to advance. aphasia would like some help.

When shouldn’t we help?

If you help all the time, immediately, the person with aphasia will become more passive and take less and less responsibility for their own communication. That is not the goal that the two of you are striving for. It’s not easy, but allow a few seconds to pass, and then a few more seconds, before you jump in and help. The person with aphasia, and you, will have the opportunity to discover new skills and ways to communicate when those seconds stretch out.

UNDERSTANDING CHECK

True or False: True or False: True or False: Aphasia therapy Aphasia therapy should Things you work on in is recommended give me a means to therapy should help for everyone communicate. you do things that are with aphasia. important to you.

www.vohaphasia.org 9

UNDERSTANDING CHECK

True or False: True or False: True or False: It is very important to There are ways for family Eective communication ﬁnd ways for the members and others to at home helps the person with aphasia to learn how to communicate person with aphasia connect with others. eectively. improve. WHAT HAPPENS AFTER THERAPY ENDS?

How can we stay active? How can we keep improving?

Therapy is not the only way that people improve and Our brains are designed to adapt to the situations we our brain repairs. Formal therapy can focus on specific are in. So, continue to put yourself in situations where skills, but ongoing social interaction and engagement you are challenged. On the one hand, don’t aim so goes a long way towards continuing improvement. high that you will give up. On the other hand, aim a little higher than what you can do so you will improve. Most people with aphasia end up losing their friends and often lose communication with their family members. In Staying home, sitting on the couch, and watching TV aphasia, this can result in social isolation. Social isolation will not help you improve. Make a schedule together has the same health risks as smoking 15 cigarettes a that includes opportunities to stretch and improve. day, or heavy drinking. Social isolation increases the risk of premature death by 14%. So, losing connections to friends and family members is a serious matter. How do we keep communicating? UNDERSTANDING CHECK Plan one night a week with friends who will support As time passes, communication strategies and communication. Invite neighbors or friends over for techniques will change and evolve. That is good! a coffee Truechat about or False:ways to support communication.True or False:But, it requires constantTrue awareness. or False: Aphasia groups When you go out to eat or to events, pick short times and caregiver programs, like those offered at Voices and situations Aphasia that are therapy less noisy. PrepareAphasia in advance therapy of should Hope for Aphasia,Things provide you the workopportunity on in for the for successis byrecommended downloading and reviewing givemenus me or a meansperson to with aphasia therapyto be challenged should by help others in other items.for everyone communicate.similar situations, oryou for family do things members/friends that are to be with aphasia. challenged in how theyimportant are supporting to you. and adapting If the person with aphasia was a part of a bridge club, to their skills. shuffleboard club, or any other social venue, have a meeting with that group to review communication Contact us at Voices of Hope for Aphasia, or a supports and strategies. Helping the person with similar organization near you, to find out how you aphasia get back to doing things of interest is a can continue to improve over years. critical part of recovery.

UNDERSTANDING CHECK