by Abby Nichols
I didn’t know what to expect when I decided to volunteer at the Aphasia Initiative. I had never directly communicated with anyone who has had a stroke or brain injury, but I have learned so much about aphasia in my Speech and Hearing major. From the start, I was so blown away at the enthusiasm and love all the participants have coming to the group each day. The way they all greeted each other and accepted one another no matter age, gender, or communication difference was so incredible to see. Everyone’s attitude was so contagious to one another, and made me feel so happy to be there, too.
I learned so much about how aphasia is so different from person to person. It affects everyone differently emotionally and physically. I also learned so much about using different ways to communicate: like whiteboards, Alternative and Augmentative Communication Devices, and writing. Everyone that goes has adapted so much and showed me how I can adapt to communicate and in other aspects of my life, too.
The biggest pleasure I had with coming was getting to know a little bit about everyone as a person. From talking about getting numbers for the Vietnam War draft, learning about the love Ross has for thrifting, Andrew’s love for sports, God, and math, Mike’s past with guitar and football, Suzi’s beautiful children, or Everett owning a farm. I was able to learn all these things, and many more, through communicating in a different way, and that is what made it amazing!
by Madilyn Majors
My experience with Aphasia Initiative this semester has been amazing. I came into the group knowing very little about aphasia and had never encountered someone who has aphasia. Furthermore, this group was beneficial beyond the realm of education, this group allowed me to take a class that fit my personality. I love having the opportunity to interact with others of all backgrounds, and aphasia initiative gave me such an amazing outlet to pursue this. In addition to giving the learning support that student’s need, aphasia Initiative has been known for giving amazing support to the members. I have watched as this semester has progressed connections between members have become stronger, and deep conversations are had by many that result in growth. This group really sets the standard for what support is. They are with you through the hardships and will cheer you on through every achievement you have no matter how small. This support doesn’t end simply at the members. I found that even I was being supported by those around me when I was learning how to better assist in the aphasia initiative. I was afraid I would say the wrong thing, or not do enough but with the constant encouragement of Professor Brello and the members in aphasia initiative I felt more comfortable to make mistakes and learn from them.
By Paige Mobley
The members of this group have acquired neurogenic disorders as a result of, TBI or stroke,which affects their speech, language, motor functions, and limbs. The staff is composed of two phenomenal speech pathologists, Jen Brello and Arin Sheeler, along with both undergrad and graduate students. This is my 2nd year volunteering as an undergraduate student and this has been an educational blessing of an opportunity for me as a student. I absolutely love it!
Each session I learn something new from our members or about our members and being apart of this group has really opened my eyes. It has broken a lot of stigmas for me as well. When I first started volunteering, I was very intimidated, but overtime I’ve come to know these people and their families. I no longer see them as being disabled or in need of being fixed, but rather as strong and very intelligent people with greatly diverse personalities. Some of the main takeaways from this group are that aphasia, whether it be from a stroke or TBI, doesn’t look the same throughout all affected. It can affect anyone no matter your age, gender, race, ethnicity, size, etc. In addition, these people are not disabled like one may think. They do outstanding artwork, go to sporting events, go to concerts, cook, sew, have jobs, compete in athletic events, and so much more.
It’s phenomenal how the brain works and how these members have learned to use different low tech and high tech adaptations to overcome their daily challenges. Each one of them has a different story and background, but they have made one big family as the OSU Aphasia Initiative. It’s truly inspiring and I’ve never experienced an environment like it. I am so proud of the progress we’ve made as a program in expanding the amount of members we have and bringing more awareness of aphasia to the community by educating health professionals, community members, students, professors, and more. As I graduate, I will truly miss being apart of this so-called family and starting my day, once a week, with their smiling faces. Overall, the Aphasia Initiative has affirmed I am in the place I’m supposed to be as a future speech-language pathologist.
by Elizabeth Mills
As a student volunteer for the Aphasia Initiative this past semester, I was able to take away a multitude of valuable lessons from this incredible group. Above all though, what resonated with me the most was learning about the power in not being afraid to make mistakes and the ability to find joy in these mistakes, an especially pertinent lesson for anyone, like myself, who tends to sweat the small stuff.
Knowing many of the language and communication challenges of Aphasia, I had the preconceived notion that there would be feelings of frustration, fear, and embarrassment amongst the group members. Although these moments of difficulty undoubtedly existed, there was an overwhelming sense of lightness, ease, and lack of pressure in the Aphasia Initiative. This was even in the face of this semester’s challenging new “Toastmasters” program, where members were encouraged to give speeches in front of the group. Were the speeches perfect? No! Did members struggle with finding words, stringing together phrases, and sound substitutions? Yes! But there was very little shame surrounding these mistakes! Despite each member’s circumstances, they did not beat themselves up over these issues. Aphasia or not, this is a good lesson for everyone in not being too hard on oneself.
Not only were the members not bogged down by these mistakes, they were willing to laugh and find joy in them as well! On the first day of volunteering, a member accidentally said that his daughter was “400 years old.” I instantly thought to myself, “That was pretty funny, but is it appropriate for me to laugh?” Not a moment later the entire room was filled with a chorus of joyful belly laughs. I quickly realized the capabilities of joy and laughter as coping mechanisms in life’s difficult moments. On the last session I attended, I could not help but look around the room with a big smile on my face as members used silly impressions and vocal qualities to practice different speaking techniques. This was a perfect example of the Aphasia Initiative’s bright, optimistic climate that comes along with not being self-conscious of making mistakes and being perfect.
This ability to be silly, laugh, and not take oneself too seriously all stems from the Aphasia Initiative’s overwhelmingly supportive environment. The members face similar challenges, so they pour understanding and encouragement onto one another. I have observed one individual reassuring another to “take their time,” while struggling to find their words. I have seen everyone cheer as a member finally produced the target sounds of a word after many tries. During the “Toastmasters” speeches, I have witnessed members being surrounded by words of motivation and celebratory outbursts as they tackle the daunting task of speaking in front of others. Ultimately, we can all look to the Aphasia Initiative for an important lesson in how laughing about mistakes and not taking oneself too seriously fosters a joyful attitude, even in the face of hardship.
by Allison Kinross
Aphasia Initiative has been one of the most transformative experiences I have had during my four year at Ohio State. Studying language development within the classroom is always interesting, but being able to engage in hands-on learning experience took my love for the major to entirely new level. Working under Arin and Jen gave me both observation hours and exemplary practices that I will be able to carry into the field.
My favorite part about working as a communication partner in the Aphasia Initiative is seeing the same members week after week. Their vulnerability in the group really shines when they share their stories with us and their peers. They might not always believe me, but I have seen tremendous amounts of progress in their language skills. Throughout our own communication activities, and the techniques their speech-language pathologists give them, they have made great strides in their communication confidence. I feel as though I have developed real friendships within the group.
After working with the group for three years, I developed a new passion for working with persons with aphasia. I hope to work in a hospital setting with stroke and traumatic brain injury patients after graduate school. My involvement in this program is what sparked my interest in the field and I could not be more thankful for the opportunities it gave me!
by Hailey Bell
I have been volunteering in the Aphasia Initiative for almost two years. Throughout my experience here, I have learned so much that I would not have learned any other way. I know how to assist people better and I have also learned so much about the members and their lives that I feel I can connect with them on a more personal level. Throughout the semesters, new members have not only been welcomed into the group but also our family. One of my favorite aspects of this group is how welcoming all the members are- this applies to accepting new students and also new members. Aphasia Initiative members want to help the students to learn, and the members also want new members to feel accepted because they understand how hard life can be. Every time I go to the Aphasia Initiative, I am inspired to work harder and to be more understanding, because you never know what people are going through.
I work at a local Whole Foods Market, and here I have been able to use the skills that the aphasia initiative has given me to help others. While at work, one of my coworkers was given a card from a customer that read “I have Aphasia” and listed some tips in order to help her talk to the customer. My coworker had never heard of Aphasia, and still struggled to make conversation with this customer. However, I was able to use the skills the members of the Aphasia Initiative have taught me in order to talk to the customer and show my coworker how to effectively communicate with somebody with aphasia. Until this moment, it did not dawn on me that my coworkers did not know what aphasia is. I was able to use this as a teaching moment, and now almost all of my coworkers know what aphasia is and know how to effectively use aphasia-friendly communication strategies. Without the Aphasia Initiative, I would have not learned any of these things and would not have been able to inform my coworkers about them either.
Looking forward, I am excited to see what my last semester in the Aphasia Initiative will bring me. I love meeting new members and also learning more about our current members. I am upset I am graduating and leaving this group behind, but I am so thankful for my time and experience her and know that it will forever make me a better speech-language pathologist. Thank you to Arin and Jen for organizing the group, and to all the members for coming each week!
Dr. Harnish Awarded $2.3 Million Grant from NIH to Investigate Genetic Links to Recovery from Aphasia
Stacy Harnish (Associate Professor in Speech and Hearing Science) with co-investigators Christopher Bartlett (Nationwide Children’s Hospital), Jeff Pan (Biomedical Informatics), Stephen Petrill (Psychology), David Osher (Psychology), and Vivien Lee (Neurology) were awarded a five-year, $2.3 million grant from the National Institute on Deafness and other Communication Disorders. The project will investigate patient-specific factors that may influence response to therapy for language impairment after stroke, or aphasia. Results from this work will assist with better estimation of prognosis for stroke survivors with aphasia, which could empower patients and families to make more informed health care decisions about how to pursue the most appropriate rehabilitation services based on their unique characteristics, such as genetics, cognitive skills, and brain structure after stroke.
Congratulations, Dr. Harnish!
Yoga Happiness by Anna Evans
In addition to our regular communication focused programming, we believe that it is important to address and support the other challenges our members face on a daily basis. One of these areas of difficulty is mobility and balance. In order to meet this need, we have partnered with Burgundie (Burg) Miceli, a local yoga instructor at Happiness Yoga Studio.
Burg initially became involved with our group after making a donation to our Open House Raffle and subsequently offering to teach yoga classes to our members. Burg has a personal connection to our mission and cause since her mother has also experienced aphasia. Since then, Burg has been working with our clients for almost a year and has taught 2 classes per month each semester. We have been so lucky to have her as part of our team and enjoy every session with her. Burg explains that “We have fun doing it! Even those that grumbled about doing yoga (you know who you are, wink wink!) still did what they could and enjoyed some aspect of it!” Additionally, Burg reflects that she has seen significant improvement in the balance of our members. “Overall, just being able to move their bodies and work on both left and right sides was good for everyone!” Lastly, in addition to balance and strength training, Burg has also shared specific breathing techniques to help cope during stressful situations.
Just like many of our members, Burg is in a transition of her own. In the next month, she will be moving to Missoula, Montana to work with aphasia clients full time at the Big Sky Aphasia Program at the University of Montana. We are sincerely grateful for Burg and her contributions to the OSU Aphasia Initiative and wish her the best of luck in her next endeavor!
Art Therapy at the Initiative! by Anna Evans
Sure, art can be fun and relaxing but did you know it can even be therapeutic? Here at the Aphasia Initiative, we recognize the importance and benefits of incorporating multiple modalities into our therapy and the recovery process of our members.
For the past two years, Tanya Pirasteh has been running art classes and coordinating different projects for our members. Tanya originally became involved with the Aphasia Initiative through her friendship with our very own client, Max McClain! Typically, Tanya runs art sessions twice per semester and our members love this opportunity for creative expression. Her favorite part about working with the Aphasia Initiative is “introducing new artists and ideas… [the members] will generally try anything: they’re pretty fearless! If I tell them to try and draw something a lot of people would consider difficult, they just go for it!”. Additionally, Tanya notes that “the greatest outcomes I’ve seen personally are some genuinely great drawings in this group. Keeping in mind a lot of folks are working with their non-dominant hand, it is really quite impressive.”
In addition to working and engaging with our members, Tanya has also “loved spending time communicating with some family members and getting to know the group as a whole. Jen and Arin are caring individuals and I have learned so much from being a teeny part of their work.”
We are excited to continue this creative partnership in the future and can’t wait to see what projects and ideas Tanya has in store for us!
by Erin Stefancin
“And then it hit me”…isn’t that how all the best stories begin?
I had the pleasure of attending my first professional conference in early March of this year: The Aphasia Access Leadership Summit in Baltimore, Maryland, meeting and learning from pioneers of the Life Participation of Approach to Aphasia (LPAA). I was overwhelmed by the passion in the room targeted at improving communication access for all persons with aphasia. A major focus of the conference was effecting change at a systems level: how can we improve communication access for persons with aphasia within healthcare settings and how we can encourage all healthcare providers, not just speech-language pathologists, to embrace the ideology of supported communication. Dr. Nina Simmons-Mackie spoke so eloquently about the 2.5 million Americans living with aphasia and the staggering costs to society due to poor health literacy- for persons with aphasia. And then it hit me… Aphasia Gain: the benefit of supported communication for all.
Being a graduate student in the final semester of my program, I have had the opportunity to experience a wide variety of clinical settings in a short period of time. I was taking a break from my intensive semester focused on Auditory Verbal Training and Early Intervention at Nationwide Children’s Hospital to attend Aphasia Access. During Dr. Simmons-Mackie’s talk, I began thinking about my studies in American Sign Language with Deaf Studies. “Deaf Gain” is a term that was coined by Aaron Williamson in 2005 to describe the accommodations and modifications that benefit Deaf people that can also benefit society as a whole. From widened hallways to allow for communication and easier visual access to use of gestures within baseball games by the umpire, society as a whole can benefit from these communication supports. With “Deaf Gain” those with physical disabilities have easier access in hallways and all nosebleed season ticket holders know what call the umpire made.
This led me to the principles of supported communication in conjunction with the LPAA principles. Persons with aphasia and society as a whole can benefit from these ideologies…a new outlook of Aphasia Gain. These ideologies include using verbal and written instructions, simplified language, visual supports, increased wait time and use of body language and gestures to supplement spoken language communication. All of these tools allow persons with aphasia to better access the information being portrayed, but implementation of these strategies can truly do even more. These tools can benefit persons with traumatic brain injuries and dementia in which their memory can be impacted, giving them verbal and written feedback to increase carryover of therapeutic tasks. It can benefit those with low health literacy skills or low English proficiency in which visual support of images to supplement text and simplified language can increase comprehension. The benefits of these accommodations go beyond those with aphasia. Aphasia Gain can lead to equal communication access for all.
So, what is the potential impact? Who can truly benefit from the implementation and consistent use of communication that can be accessible to all?