Aphasia and the Arts: Painting and Poetry

Happy National Aphasia Awareness Month to you all! In honor of National Aphasia Awareness Month, and in recognition of the upcoming, All About MossRehab Through the Arts, we are highlighting people with aphasia who are making a contribution to their communities through the arts.

We are honored to feature the work of mother, painter, poet, and survivor, Jenn.  She tells her story best, we’re so grateful to share her words and images with you.

The day I suffered from stroke I had an ischemic and hemorrhage stroke on the left side of my brain I had a craniotomy to remove the entire left side of my skull.  I was young, my son was only 14 months old, and I now had global aphasia, I could not read, write, speak, and couldn’t understand. I was in a lot of pain, and had a lot of sadness, but so grateful to be alive. 

With Aphasia Awareness, I would like to share you with a short story: 

Pain & Hope 

I couldn’t sing my baby a lullaby, read him a bedtime story and I could not say “I love you”.  I couldn’t spell my name and couldn’t understand my alphabet A-Z or even count 1 to 10.  It changed my life and it was extremely difficult. That was the only way to express myself… to paint.

After looking at all these painting of Red (angry) and Blue (Sad) I decided there would be a last piece of Red & Blue “Unraveling”.  My life was so tangled in a knot and it was so tight.  But now is much clearer and unraveling. I am so grateful and blessed for my life.

After these pictures I hadn’t painted for a long time, because I wanted to stay focused with my family. But recently, I wrote a poem  and read it in one of my aphasia support groups as a challenge to work on my words and prove to myself I can also be expressive through writing.  In particular, I will share my poem “The Only Light.” This poem was written by about my first painting “Isolated” as I was sitting on the floor in the dark when I made it.  My son was sleeping and I didn’t want to bother him while I was painting to convey the pain I was feeling at the time. Since then, I continue adapt and realized I can still communicate my thoughts and emotions by creative expressions like painting as well as words. No matter what you’ve gone through, don’t give up finding ways to show others how you feel. Keep trying in the darkness, because the light will soon follow. 

Aphasia and the Arts: Poetry

Happy National Aphasia Awareness Month to you all! In honor of National Aphasia Awareness Month, and in recognition of the upcoming, All About MossRehab Through the Arts, we are highlighting people with aphasia who are making a contribution to their communities through the arts.

We’re thrilled for our first feature to highlight, Mark Harder, poet, innovator, and creator of Poems in Speech! Thank you, Mark, for sharing your words with us.

  • Were you always interested in poetry? 
    No – I used to write instructions, lessons, and grants for plastering apprentices, journey workers, and apprentice teachers.
  • What inspired you to write your first poem? 
    Early on my stroke, I was not able to express my frustration, sadness, pain, and loss. I couldn’t tell my wife, children, friends, coworkers, and the doctors what was the symptoms. Then I could finally describe the pain on my right side, (like sunburn) and it was figuratively but so liberating too. My first poem was titled, “To Me, This Is Aphasia”.
  • What is important to you about poetry? 
    I feel that my circumstances have given me a lot of thought (materials). I use poetry as therapy in my soul. I am practicing on my speech, writing, reading, vocabulary, tempo, and creativity.
  • What prompted you to start your virtual poetry group? 
    Before the pandemic, I would go to the MossRehab Aphasia Conversation Group, aphasia support groups, and research – then everything stopped. Slowly, the support groups resumed virtually. But in August, there was another break in sessions. I purchased a Zoom account and invited the Aphasia Conversation Group to continue by ourselves. I think is helped. Then I thought about sharing my passion of recovery through poetry.
  • What’s your favorite thing about the virtual poetry group? 
    I enjoy the camaraderie of struggles and succeed – and just being together.
  • How can people find out more about your virtual poetry group? 
    I post information on Facebook, https://www.facebook.com/profile.php?id=100016348414229,  and Instagram, @poems_in_speech. I created a website named poemsinspeech.com and you can email me for information, mark@poemsinspeech.com.
  • What advice would you give people with aphasia who want to start writing (or reading) poetry? 
    It took months to just say the alphabet and the numbers. But I try to write the things that I was saying too, like – “I want to get better.”, “I’m done.”, and “I locked the door.” I couldn’t rhyme. Try to express yourself in words, emotions, and logic.

Trust (by Mark Harder)

I don’t trust my lips.

I don’t trust my tongue.

I don’t trust my breathe.

I don’t trust my whole mouth.

I don’t trust the words I see.

I don’t trust the voices I hear.

I don’t trust my finger to point.

I don’t trust my head to nod.

I do trust the sun will rise.

I do trust the flowers will bloom.

I do trust the tide will ebb and flow.

I do trust the moon will wobble.

I do trust that the pain will pass.

I do trust that things will change.

I do trust the me inside.

I do trust that God is next to me.

Music and Aphasia

As we wind down our activities for National Aphasia Awareness Month, we’re so pleased to feature this guest post from our own, Roberta Brooks, CCC-SLP!

Back in January, when we could still gather together, a group of members of our Aphasia Center met weekly for Musical Mondays. Musical Mondays was designed to be a 10-week trial program to explore the question: “What can music do for you?”.   We completed 9 weeks of our program before COVID-19 changed the way in which we interact with each other, for now. Those 9-weeks were filled with laughter, music, sharing, and support. We learned a lot from each other and experienced the power of music. Although the program is over, for now, there are many ways to incorporate music into your life!

What can music do for you?

Have you noticed all the music in the air during Aphasia Awareness Month?  It makes sense. Music is a “universal language”. Hans Christian Anderson, a famous storyteller said:  “Where words fail, music speaks.” Researchers continue to discover the full power of music and its role in healing (see music and healing:  https://allarts.org/programs/open-studio-with-jared-bowen/boston-hope-amanda-gorman-and-more-szwvrv/).

Aphasia therapy has long used singing as a tool for regaining speech. Let’s start with singing and then look at other ways music can help with communication skills and shared experiences.

Sing, Sing, Sing

Melody, rhythm, and familiarity with favorite and/or emotionally charged songs may allow a person with aphasia to sing words he/she may not be able to speak. Start by singing a favorite song or a song that connects you to a happy memory in your life.

If the song has repeated words in the chorus, is slow paced, and uses short words, all the better. But, start with a song you love. Sing along with someone. There are lots of ways to do this. Sing with a family member or find a song on you-tube, Pandora, or other sources of music you may want to explore. We found YouTube to be particularly helpful because we could often find the song we wanted to sing with the words in view on the computer screen.

If you are singing at home, sing along with the song each day, for 10 to 15 minutes. Over time, gradually make the sound softer on your computer and sing a bit louder. When you feel ready, try singing the song on your own. 

Here are a couple of favorite “sing-along” songs from our group.

Queen,  We are the Champions

The Beatles,  Let It Be

Clap your hands  

Rhythm and rate (tempo in music) are important parts of music and speech. Copying a rhythm pattern and/or creating a rhythm pattern by clapping your hands, beating on a drum or tabletop, or tapping your foot is good for you. Start with short rhythmic patterns and gradually try to copy longer patterns. Listen carefully to the pattern you are repeating. Do they sound the same? This activity exercises listening skills, auditory memory, and fine motor coordination.   Use this listening skill when you are speaking to help yourself take your time when talking.

Notice the different rhythms in these two pieces of music: 

ABBA,  Dancing Queen

Jean Luc Ponty, Cosmic Messenger

Music and Mood

A 2013 study in the Journal of British Psychology found that people who listen to upbeat music could improve their mood and boost happiness in just two weeks. Music can also be energizing or  relaxing and a source of comfort. See how different types of music affect your mood

Mary J.  Blige,  Be Happy

Gene Kelly, Singin’ in the Rain

Elton John, Candle in the Wind

Beethoven, Moonlight Sonata

Elvis Presley, Hound Dog

Music can do a lot for us. We can enjoy it when we are alone and we can enjoy it together.  In this computer age, even when we are apart, music can be a shared experience, https://video.whyy.org/video/you-oughta-know-episode-19-lokfz3/.

Until we can be together again, let’s keep the music going!

For more information about joining the MossRehab Aphasia Center, please contact: Ms. Nikki Benson-Watlington at bensonwn@einstein.edu or 215-663-6344

June is National Aphasia Awareness Month!

At the MossRehab Aphasia Center, every month is Aphasia Awareness Month, but we always plan special events for June. Please join us and help spread the word about aphasia!

We are hosting several Facebook Live Events!

  1. A virtual education program entitled, Aphasia and the brain 101: Why what’s difficult… is difficult
  2. Two sessions during the Aphasia Access 24-hour Teach-In: Featuring Sharon Antonucci at 5:15pm and Roberta Brooks at 6:45pm on Wednesday June 24th
  3. A ‘Watch Party’ of the WHYY You Oughta Know segment about our Musical Mondays
MossRehab Aphasia Center Calendar of Events

We are also launching a new weekly activity, Wednesday’s Virtual Variety Hour!

We hope to see you there!

For more information about joining the MossRehab Aphasia Center, please contact: Ms. Nikki Benson-Watlington at bensonwn@einstein.edu or 215-663-6344

Personalizing communication practice

For people with aphasia, having to stay at home can make it more difficult, but also more important, to keep practicing language and communication.

Keeping practice fun and relevant to daily life is crucial!

In this post, are a few tips for making practice as personalized as possible.

In the digital age, many of us have forgotten how helpful an old-school paper communication book can be.

Making your own communication book can be a fun way to practice language, stroll down memory lane, and get ready for when we can all be out and about together again.

Plus, you’ll be right on trend with #diy 🙂

Some aphasia practice apps let you add your own, personal items. These include Sentence Shaper and Tactus Therapy. Here are two videos showing how to “Add Personal Items” to the Naming and Writing activities in Tactus Therapy Language Therapy.

If you want to personalize the news you see everyday, you can try TalkPath News by Lingraphica. These aphasia-friendly news segments let you choose your news.

For links to even more aphasia software, check out https://www.aphasiasoftwarefinder.org/

Stay safe and well! Feel free to reach out to MossRehab Aphasia Center for more tips and information. We are still here as a support and resource for people with aphasia and their families.

Staying connected during COVID-19

We’ve all been affected by COVID.  For people with aphasia, the quarantine can make social isolation even worse. 

Here are some ideas for staying connected with your community!

Video chat with friends and family.  Being able to see people’s faces and gestures helps with understanding during conversation… and seeing those smiling faces can help keep spirits up!

You can play cards, or even board games, on a video chat just choose one person to set up the board or roll the dice!

Join online support groups!  For example, the Aphasia Recovery Connection hosts a community of people with aphasia on Facebook.

Instagram and Pinterest can be great for people with aphasia, they mostly use photos!  Search for posts by people with aphasia, #aphasia, or your favorite subject (for me, it’s #dogs)

Take a virtual stroll through a museum!  Museums in France have shared for free over 100,000 photos of famous art!

Help others from the comfort of home. You can search “volunteer from home” or “online volunteering” to find ideas, like helping scientists track bird populations or finding new galaxies!

Share photos of shelter animals looking for homes

Remember, when you’re online,

Do not share personal or financial ($) info

Do not click on links in emails you didn’t ask for

Stay safe and well! Feel free to reach out to MossRehab Aphasia Center for more tips and information. We are still here as a support and resource for people with aphasia and their families.

Outcome Measurement based on the Life Participation Approach to Aphasia: Vol. 1

The MossRehab Aphasia Center was founded on the principles of the Life Participation Approach to Aphasia (LPAA, Chapey et al., 2000).  These principles include:

  • Explicit goal is enhancement of life participation
  • Services are available to all affected by aphasia
  • Assessment and intervention targets personal and environmental factors
  • Success is measured by documented life changes

The importance of adherence to these principles is brought into sharp relief by recent evidence:

  • 20% of persons with aphasia report having no friends at 6-months post-stroke (Aphasia Access White Paper, Simmons-Mackie, 2018)
  • Best Practice Recommendations (Shrubsole et al., 2017; Simmons-Mackie et al., 2017)
    • Access for all persons with aphasia
      • Assessment and treatment
    • Meaningful impact on quality of life
    • Goals people with aphasia have for themselves (e.g., Worrall et al., 2011)
    • Greater control and independence
    • More social opportunities

The question is, how can we make measurement of life changes feasible and practical when confronted with the reality of clinical practice?  Is it possible to measure objectively what is in many ways a subjective experience? 

We propose that the answer is, yes!  In the weeks to come, we will be posting a series on suggestions for strategic outcome measurement based on the principles of the LPAA.  Each of these will be based on the following, fictitious, case example.

Donna is a 67 y/o woman, 14-months s/p ischemic L MCA affecting fronto- parietal and superior temporal cortex, sparing Wernicke’s area.  She is right-handed and is a native English speaker.  She worked as an outpatient coordinator for a local children’s specialized hospital for 25 years, having retired 6 months prior to her stroke.  She has 5 adult children and 15 grandchildren ranging in age from 15 years to 3 months.  A month prior to her stroke, she and her husband rescued a 7 year-old American Staffordshire Terrier from a local shelter.

Per WAB-R, Donna presents with conduction aphasia, but her language production may be better characterized as borderline fluent with mild apraxia of speech.  Word retrieval difficulty is characterized by use of non-specific words (thing/stuff, pronouns without antecedents), empty circumlocution, frequent pauses lasting longer than 2 seconds, and comments indicating difficulty.  Agraphia without alexia is also present.  She and her husband both report that she spends most of her days watching TV, which was not her habit prior to her stroke. 

In today’s post, we’ll demonstrate one tool, Key Life Inventories (Simmons-Mackie & Damico, 2001), which can be used to proceed from initial assessment to an outcome that reflects this client and her co-survivor’s goals for themselves.

Key Life Inventories can serve as practical method to organize your conversation and support clients in reflecting on their lives, what has changed since their stroke, and what is going to important to them moving forward. People with aphasia may need multimodality assistance to comprehend what information is being asked of them and to express that information.  Visual aids, such as the LIV cards (Haley et al., 2010) and the Assessment for Living with Aphasia (Kagan et al., 2010) are two examples of clinical tools that can provide that support.

The first step will be to help your client think about what activities were important to them before the stroke, whether those activities are still important to them, and any new things that have become important to them since the stroke.  Below is an example Key Life Inventory for Donna.

The next step will be to help the client think about the, “What now?“. How will this exercise be used to move toward goals they have for themselves?  In doing so, it can be important to help clients communicate about what strengths they have and how those strengths can be harnessed in the pursuit of priorities, whether they are the same those before the stroke or are new. 

Help clients think about not only activities in which they want to engage, but also how engaging in those activities will move them toward fulfillment of the responsibilities they feel in the relationships and roles they have in their lives.  Below are some examples from Donna’s case.

Just as clients don’t tend to come to us with goals like, “I want to increase my auditory comprehension to 80% accuracy”, we cannot work toward a goal to “host a pot luck family dinner with 80% accuracy”.  We must apply clinical expertise to translate Donna’s desired outcomes into cognitive-linguistic skills and tasks and communicative competencies, and to determine any internal or external barriers that need to be addressed. 

In Donna’s elaborated Key Life Inventory below, we now position the newly established goals as the starting point that informs the choice of clinical tools to:

  • Determine the skills required and how to train/support/facilitate progress
  • Identify any internal (e.g., lack of confidence) and external barriers to progress
  • Confirm plan with the client, implement plan, assess/measure progress

In the next post in our series, we’ll examine how we might engage Donna and her co-survivor in ongoing conversation about progress toward her cognitive-linguistic goals, as well as positive change in Donna’s communication confidence, and how we might assess the degree to which the treatment strategies we’ve chosen are facilitating progress toward these goals.

Portions of this post were originally presented at the 2018 ASHA Convention in a talk entitled, Strategic outcome measurement using the life participation approach to aphasia, presented by the Aphasia Access Research Working Group (Antonucci, Cherney, Kagan, Haley, Holland, Schwartz, Simmons-Mackie, & Kiran).

Online resources

References and published resources

  • Babbitt, E., Heinemann, A., Semik, P., & Cherney, L. R. (2011).  Psychometric properties of the communication confidence rating scale for aphasia (CCRSA): Phase 2.  Aphasiology, 25(6-7), 727-735.
  • Chapey et al., 2000. Life Participation Approach to Aphasia: A Statement of Values for the Future.  ASHA Leader 5(3):4-6
  • Cherney, L. R., Babbitt, E. M., Semik, P., & Heinemann, A. W. (2011). Psychometric properties of the communication confidence rating scale for aphasia (CCRSA): Phase 1.  Topics in Stroke Rehabilitation, 18(4).  352-360.
  • Elman, R. (Ed.). (2006). Group Treatment of Neurogenic Communication Disorders: An Expert Clinician’s Approach, (2nd ed.), San Diego, CA: Plural publishing.
  • Garrett, K. & Pimentel (2007). Measuring outcomes of group therapy. In R. Elman (Ed.). Group treatment for neurogenic communication disorders: The expert clinician’s approach. (2nd ed. ) San Diego, CA: Plural Publishing.
  • Goodwin, Charles (1995). Co-Constructing Meaning in Conversations with an Aphasic Man. Research on Language and Social Interaction , 28 (3), 233-260.
  • Haley KL, Womack JL, Helm-Estabrooks N, Caignon D, & McCulloch KL, (2010). The Life Interest and Values Cards. Chapel Hill, NC: University of North Carolina Department of Allied Health Sciences.
  • Haley KL, Womack JL, *Harmon TG, McCulloch M, & Faldowski R. (2018). Life activity choices by people with aphasia: Repeated interviews and proxy agreement. Aphasiology. doi:10.1080/02687038.2018.1506087
  • Hilari, K., Byng, S., Lamping, D. L., & Smith, S. C. (2003). Stroke and Aphasia Quality of Life Scale­39 (SAQOL­39): Evaluation of Acceptability, Reliability, and Validity. Stroke, 34(8), 1944-­1950.
  • Hopper, T., Holland, A., & Rowega, M. (2002). Conversational coaching: Treatment outcomes and future directions. Aphasiology, 16(7), 745­-761.
  • Hula, W., Doyle, P., Stone, C.A., Austermann­-Hula, S. N., Kellough, S., Wambaugh, J., Ross, K. B., Schumacher, J. G., & St. Jacque, A. (2015). The Aphasia Communication Outcome Measure (ACOM): Dimensionality, Item Bank Calibration, and Initial Validation. Journal of Speech, Language, and Hearing Research, 58, 906–919.
  • Kagan, A. et al., (2008). Counting what counts: A framework for capturing real­life outcomes of aphasia intervention, Aphasiology 22(3), 258-­280.
  • Kagan, A. et al., (2008). Counting what counts: A framework for capturing real­life outcomes of aphasia intervention, Aphasiology 22(3), 258-­280.
  • Kagan, A., Simmons­-Mackie, N., Victor, J. C., Carling­Rowland, A., Hoch, J., Huijbregts, M., Streiner, D., & Mok, A. (2010). Assessment for Living with Aphasia (ALA). Toronto: Aphasia Institute.
  • Kagan, A., Winckel, J., Black, S., Duchan, J. F., Simmons-Mackie, N., & Square, P. (2004). A set of observational measures for rating support and participation in conversation between adults with aphasia and their conversation partners. Topics in Stroke Rehabilitation, 11(1), 67-83.
  • Kertesz, A. (2006). The Western Aphasia Battery–Revised. San Antonio, TX: The Psychological Corporation.
  • Kiran, S. et al., (2018). Survey of aphasia assessment measures implemented in clinical and research settings. Poster presented at the 2018 Clinical Aphasiology Conference, Austin: TX.
  • Lomas, J., Pickard, L., Bester, S., Elbard, H., Finlayson, A., & Zoghaib, C. (1989). The Communicative Effectiveness Index: development and psychometric evaluation of a functional communication measure for adult aphasia. Journal of Speech and Hearing Disorders, 54(1), 113-­124.
  • MacWhinney, B., Fromm, D., Forbes, M. & Holland, A. (2011). AphasiaBank: Methods for studying discourse. Aphasiology, 25, 1286-­1307.
  • Mayer, J.F., & Murray, L.L. (2003). Functional measures of naming in aphasia: Word retrieval in confrontation naming versus connected speech. Aphasiology, 17, 481­-497.
  • Nicholas, L.E. & Brookshire, R. H. (1993). A system for quantifying the informativeness and efficiency of the connected speech of adults with aphasia. Journal of Speech and Hearing Research, 36(2), 338-3­50.
  • Schlosser, R. W. (2004). Goal attainment scaling as a clinical measurement technique in communication disorders: A critical review.  Journal of Communication Disorders, 37(3), 217-239.
  • Shurbsole, K., Worrall, L., Power, E. & O’Connor, D. E. (2017). Recommendations for post­-stroke aphasia rehabilitation: an updated systematic review and evaluation of clinical practice guidelines. Aphasiology, 31(1), 1­-24.
  • Simmons-­Mackie, N. et al., (2017). The top ten: Best practice recommendations for aphasia. Aphasiology, 31(2), 131­-151.
  • Simmons-­Mackie, N. N. & Damico, J. S. (2001). Intervention outcomes: A clinical application of qualitative methods. Topics in Language Disorders, 22(1), 21-­36.
  • Simmons-­Mackie, N.N. (2018). Aphasia in North America. Aphasia Access
  • Swinburn, K., Porter G., & Howard, D. (2004). Comprehensive Aphasia Test. Psychology Press.
  • Wallace, S. J. et al. (2016). Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability and Rehabilitation, 1­-16.
  • Whiteneck, G. G., Harrison-Felix, C. L. et al., (2004).  Quantifying environmental factors: a measure of physical, attitudinal, service, productivity, and policy barriers.  Archives of Physical Medicine & Rehabilitation, 85(8), 1324-1335
  • Whitworth, A. (2003). The Application of Conversation Analysis (CA) to the Management of Aphasia. Publié dans Revue Tranel (Travaux neuchâtelois de linguistique), 38/39, 63­-76.
  • Wilkinson, R. (2006). Applying conversation analysis to aphasic talk: From investigation to intervention. Revue Française de Linguistique Appliquée, 11(2), 99­-110.
  • Worrall, L., Sherratt, S., Rogers, P., Howe, T., Hersh, D., Ferguson, A., & Davidson, B. (2011). What people with aphasia want: Their goals according to the ICF. Aphasiology, 25(3), 309–322.

A Poem By An Aphasia Activities Center Member

Like An Angel Flying By the Clouds

In your eyes

I think I finally see

My future looking straight at me

Sensitive is your soul

So can we sink into each other

Heaven knows

My life was out of control

You touched me with your sensitive soul

Like an angel passing clouds

Sweetness you give to me

Kindness is all I see

Romance I will bring to thee

Can I dance even in your dreams

So grab my wings

Like an angel flying by the clouds

See I know there is fear

But I’ll show you and say

The things you want to hear

I’ll whisper in your ear

In my arms there’s a safety zone

So grab my wings

Like an angel flying by the clouds

Tell me what do you feel

In the cold of the night

By: Antonio