Cheryl Cook, a dedicated public servant in Connecticut, is facing the life-altering challenges of amyotrophic lateral sclerosis (ALS). Officially diagnosed in April 2023, the retired lawyer from Simsbury has been battling the disease that has drastically impacted her mobility and daily activities. Despite her condition, Cook remains deeply committed to her community, continuing her roles as chair of the Simsbury Housing Authority and the Diversity, Equity, and Inclusion (DEI) Council.
Cook’s diagnosis has been both shocking and heartbreaking. After years of grappling with unexplained symptoms, she now requires assistance for basic tasks such as walking and feeding herself. Her determination to contribute to her community is evident, as she was named Simsbury’s Hometown Hero this past summer for her extensive volunteer work, which includes serving on various local committees and supporting organizations such as the Girl Scouts and Parent-Teacher Organizations.
In an interview with the Hartford Courant, Cook candidly shared her struggles with ALS. “They don’t know how to cure it and it is always fatal,” she stated. “I try to remind myself when I start to think ‘why me,’ why not me? Why would someone have this and I wouldn’t?” In Connecticut, approximately 400 people are diagnosed with ALS each year, according to ALS United Connecticut.
Comprehensive Care at UConn Health
Since her diagnosis, Cook has been receiving care at the UConn Health ALS and MD Program. This program offers a multidisciplinary approach, bringing together specialists to provide comprehensive care for patients with neuromuscular diseases. “It has done everything it possibly could for me,” Cook remarked, highlighting how the program arranges for specialists to visit her at home.
Dr. Amanda Hernandez, division chief of neuromuscular medicine at UConn Health, emphasized the importance of this collaborative care model. “This approach enables doctors to come up with a good treatment plan that holistically addresses the patient’s disease,” she explained.
Cook’s journey with ALS began when she noticed frequent tripping and falling. Initially attributing her symptoms to arthritis following toe surgery, she soon realized that her condition was worsening. Dr. Cristina Viguera Altolaguirre, a neurologist at UConn Health, described how ALS impacts motor function, starting with the limbs and progressing to speech and breathing. The average survival rate for ALS patients is typically between three to five years.
Advocacy and Community Engagement
Throughout her 30-year career, Cook has been a staunch advocate for individuals with disabilities. She served on the Connecticut Department of Developmental Disability Human Rights Commission as both an attorney and a parent to a child with Fragile X syndrome, a genetic disorder. “We went to D.C. every year and visited every senator and representative representing Connecticut and advocated for funding,” she noted, reflecting on her advocacy work.
Kevin Beal, a Simsbury selectman, nominated Cook for the Hometown Heroes honor, recognizing her unwavering commitment to community service even as she faces personal challenges. “She has been an advocate for people with disabilities for many years,” Beal remarked, emphasizing Cook’s resilience and dedication.
Cook has not shied away from difficult social issues, such as a 2019 incident involving students in blackface. She responded by forming the Spirit Council, which later evolved into the DEI Council, fostering dialogue among community leaders and students to promote understanding and healing.
As ALS progressed, Cook had to make significant changes to her living situation. After selling her home of 20 years, she moved to a ranch-style house to accommodate her declining mobility. She now relies on a wheelchair and requires assistance with daily tasks, including eating and personal care. Recently, she has begun using a BiPap machine for breathing support at night.
Cook described the pervasive impact of ALS on her life, stating, “It is everything. It is every muscle in your body atrophying.” The disease has affected her ability to perform even the simplest actions, which she finds frustrating. She shared that her husband has to assist her with getting out of bed each morning, a process that now takes up to 45 minutes.
Despite the challenges, Cook remains committed to her community and continues to find strength in her family and friends. She has redirected her focus through activities like crosswords, reading, and participating in a book club. “Community service means everything to me,” she emphasized. “It is part of giving back.”
Dr. Altolaguirre encourages those affected by ALS to maintain hope, stating that advancements in care and research over the past few decades have significantly improved the outlook for patients. “We have made advancements in the understanding of ALS, and the therapeutic landscape has grown tremendously,” she noted.
Cook’s story serves as a powerful reminder of resilience in the face of adversity. Her unwavering commitment to serve others, even as she navigates her own challenges, continues to inspire those around her.
