Lived Experience Stories

Brain Health Caretaker and Mom

GAY LEAYRES

GAYLE AYRES – RENO, NEVADA

Gayle Ayres is a brain health advocate and passionate supporter of One Mind. Her relationship with our non-profit has been influenced by her experiences as a mother and caregiver for her daughter Anna, who while in high school, was diagnosed with a severe brain illness.

Anna’s childhood was notably typical to what many children experience. Anna grew up in a loving and supportive household, she had a close bond with her sister and she had plenty of friends. Anna loved to dance and participate in musical theater. She also played sports, focusing mostly on soccer and track. Anna also excelled in academics, earning honor student status throughout her studies until her sophomore year in 2009 when her prodromal brain health symptoms became too overwhelming.

Gayle was very fortunate that the Ayres household did not stigmatize mental health and that her daughters were comfortable sharing their health concerns with her. At the beginning of Anna’s freshman year of high school, Anna revealed to Gayle that she thought that there was something wrong with her brain and that she needed to see the cognitive behavioral therapist that her older sister was seeing. Both Gayle and Anna agreed that doing so would be beneficial. In response, Gayle and her husband, Wes, promptly arranged professional help and Anna began working with her sister’s cognitive behavioral therapist as well as a child psychiatrist. A short year later, Anna was hospitalized and diagnosed with schizoaffective disorder.

In hindsight of the situation, the Ayres family had come to realize that Anna’s severe brain illness had actually begun to present itself earlier toward the end of Anna’s middle school and that at that time they had all missed fully recognizing and making sense of her symptoms assuming she was simply struggling with adolescence.

After doing extensive research into who would provide the best prodromal care for Anna, her child psychiatrist recommended to the Ayres that Anna enroll into the ABBRC program at the Staglin Family Music Festival Center for the Assessment and Prevention of Prodromal States (CAPPS), a clinical research center at the Semel Institute of Neuroscience and Behavior at UCLA that through their financial support, the One Mind founders had helped launch. In 2012, Gayle and Wes did just that. The CAPPS program is for young people who are at risk of developing a psychotic disorder, as defined by symptoms and/or warning signs; and the ABBRC (Adolescent Brain Behavior Research Clinic) is a program within CAPPS for youth who are already experiencing full-blown psychotic symptoms.

In recognizing how a brain health diagnosis changes the life of more than just the individual being diagnosed, the CAPPS program intentionally focuses on providing support to the entire family of the person participating in their program. For the Ayres, that focus became apparent when the ABBRC staff allowed Gayle and her husband to sit near Anna during her initial assessments. Anna had been experiencing elevated anxiety about traveling to Los Angeles and participating in the program, and this early personalized attention towards their specific needs helped ease Anna. The ABBRC staff and interns also showed exceptional compassion and patience to Anna, and as a result, Anna remarked she benefitted greatly by the ABBRC process.

The ABBRC staff also provided detailed clinical assessments to the Ayres family after each of Anna’s visits. This information that described the biological changes that were happening in Anna’s brain undoubtedly helped the Ayres family understand how Anna’s cognitive abilities and non-verbal skills were being impacted. It also provided structural guidance to Gayle, who post Anna’s diagnosis, was home schooling Anna in prep of her taking the GED. With this information, Gayle was able to modify the methods to how she was teaching Anna which likely played influence to Anna passing the GED on her first try.

The information the ABBRC provided the Ayres family was encouraging and hopeful and it also positively influenced the long-term care that Gayle was providing to Anna. “Learning about prodromal symptoms and therapies allowed our family to avoid the pitfalls that adolescents deal with during this illness,” Gayle recounts. “Because of the CAPPS/ABBRC, we are so far ahead of where we would have been otherwise.”

In her quest for support, Gayle also found the Brain Waves live-streamed interviews that One Mind President, Brandon Staglin hosts, to be extremely beneficial. One of the interviews mentioned the schizophrenia-focused PRIME App study that researchers at the University of California, San Francisco DRIVE Lab were leading. After researching it more, Gayle enrolled Anna into the PRIME App study. In return, through the use of the app, the Ayres received a portfolio of digital mental health services that were highly valuable given the long distance the Ayres lived from UCSF. This support included on-demand counseling, tools to meet treatment goals and access to a social network of young people who also had the disease. The PRIME app was incredibly helpful to Anna, but it also benefitted Gayle, enabling her to improve the quality of care that she was providing her daughter. Through the Ayres involvement with the Prime App study, Gayle and Anna met Dr. Vikaas Sohal, a leading schizophrenia-focused researcher, who One Mind also funds, who works at UCSF’s Weill Institute for Neurosciences. Dr. Sohal’s consultations and recommendations helped the Ayres family fine tune Anna’s medications and greatly improve her brain health.

Through the interactions that they had with Anna, members of the DRIVE Lab team recognized Anna’s future potential and strongly encouraged her to continue her academic studies. Prompted by their support, as well as that of their own, Anna is currently studying art at her local community college where she recently participated in the 2019 Spring Exhibit submitting three of her own paintings.

“Music, art and poetry have been especially important to Anna as she recovers,” states Gayle. “She also loves to sew clothing for herself and others.” To support her physical and mental health, Anna also works with a physical trainer at a local fitness center and she continues to be very social and appreciates her friendships.

Gayle remains as the main caregiver for Anna, while Anna’s father and sister are also very involved. For Anna’s recovery, the Ayres knows how important ‘family’ is and that it is an integral part of Anna’s healing. In addition to supporting her own family through their brain health experiences and advocating for One Mind, Gayle also advocates for adolescent brain health and caregiver peer support through the Out of Great Need blog she writes and shares publicly.