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.
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.
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.
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 skillwhen you are speaking to help yourself take your timewhen 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
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!
A virtual education program entitled, Aphasia and the brain 101: Why what’s difficult… is difficult
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
A ‘Watch Party’ of the WHYY You Oughta Know segment about our Musical Mondays
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
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.
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.
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.
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!
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.
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 KeyLife 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).
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