Diagnosis: Aphasia
Role: Participant in 2021 ASHFoundation awardee Nichol Castro’s research study, Determining the Distance of Spreading Activation in the Phonological Network of Persons with Aphasia to Inform Selection of Treatment Generalization Probes
Q: What is your official diagnosis? How does this affect your ability to communicate?
My diagnosis is trans-cortical motor (expressive) aphasia from a hemorrhagic stroke I suffered in 2017. I can read, write, and speak in complete sentences. Through six or more years of speech therapy, I have improved my speech skills (prosody and intonation) so that my expression, while not as good as it was pre-stroke, is close. I like to think my non-professional communication partners don’t realize that I have aphasia.
Q: What sort of obstacles do you face in communicating? How does this affect your quality of life?
I often struggle to find the correct descriptive words. And my verbal communication tends to break down after the first couple sentences, when I try to explain a complex concept, or tell a descriptive narrative. My quality of life is OK, but as an SSDI recipient, I’m making approximately 25% of what I made during my career, which involved lots of complex verbal communication.
Q: How did you get connected to this research specifically? How has this experience been as a participant in this study?
I signed on to Dr. Castro’s aphasia registry approximately three years ago when I heard about it when I came to the University of Buffalo for an aphasia support group and speech therapy. I signed up because I have a lot of spare time and I use the stipends to help pay for my individual speech therapy sessions. Also, I find these studies interesting as an aphasia awareness advocate. I feel an obligation to give back for all that speech-language pathologists have done for me, from the hospital right up to today.
Q: How has this experience affected the way you communicate? How do you hope it will?
Although I am happy to participate in the research, I have not noticed much difference in the way I communicate *because* of the research projects, but my communication has improved substantially from the individual speech therapy that also takes place at the university. My hope is that this research will be beneficial to others with aphasia through the development of innovations and new techniques for SLPs to use with their aphasia patients.
Q: Why do you think people should support this type of research?
This research is necessary for developing techniques and a knowledge base for speech therapists to employ with aphasia patients and to raise awareness on aphasia, which not as many people know about as should.