{"id":238111,"date":"2025-11-17T15:04:01","date_gmt":"2025-11-17T20:04:01","guid":{"rendered":"https:\/\/today.uconn.edu\/?p=238111"},"modified":"2025-12-02T08:30:29","modified_gmt":"2025-12-02T13:30:29","slug":"grateful-patient-finds-strength-and-support-through-uconn-healths-als-program","status":"publish","type":"post","link":"https:\/\/today.uconn.edu\/2025\/11\/grateful-patient-finds-strength-and-support-through-uconn-healths-als-program\/","title":{"rendered":"Grateful Patient Finds Strength and Support Through UConn Health\u2019s ALS Program\u00a0"},"content":{"rendered":"

\"Healthcare<\/a>When Cheryl Cook found herself tripping on sidewalks and hearing from others that she\u00a0seemed to be\u00a0limping, she knew something was off. Though she had recently had foot surgery, her recovery\u00a0seemed to be\u00a0going well\u2014her X-rays showed nothing unusual, and physical therapy offered no relief.<\/p>\n

\u201cI did every test\u2014spinal tap, MRIs, blood work\u2014you name it,\u201d said Cook, a retired attorney and longtime community leader in Simsbury. \u201cEverything came back negative, and the diagnosis process was excruciating.\u201d<\/p>\n

After two years of uncertainty, Cook\u2019s journey led her to UConn Health\u2019s Amyotrophic Lateral Sclerosis (ALS) and Muscular Dystrophy (MD) Program,<\/a> where for the first time, she felt surrounded by a full team focused not only on her medical condition but also on her well-being and quality of life. It was here that she was diagnosed with a slow-progressing form of ALS.<\/p>\n

ALS, also known as Lou Gehrig\u2019s disease, is a progressive neurodegenerative disorder that affects the nerve cells in the brain and spinal cord responsible for muscle movement. Over time, those nerve cells stop working, causing patients to gradually lose their ability to walk, speak, eat, and eventually breathe. While the rate of progression varies, the disease inevitably changes every aspect of daily life\u2014both for patients\u00a0and\u00a0the loved ones who care for them. Families often take on new roles as caregivers, helping with mobility, communication, and daily tasks, all while coping with the emotional weight of watching someone they love\u00a0lose\u00a0independence.<\/p>\n

\"A
Dr. Amanda Hernandez\u00a0 is a neurologist at UConn Health. (Tina Encarnacion\/UConn Health)<\/figcaption><\/figure>\n

Originally conceptualized by Dr. Amanda Hernandez, division chief of Neuromuscular Medicine, the UConn Health ALS and MD Program provides a \u201cone-stop shop\u201d for patients with progressive neuromuscular diseases that often require coordination across multiple specialties.<\/p>\n

\u201cWe designed this program so that patients can see everyone they need\u00a0in\u00a0one visit,\u201d said Hernandez. \u201cMany of our patients use wheelchairs or have significant mobility and fatigue issues. Traveling for multiple appointments across different days is incredibly challenging. Our clinic brings the care to them.\u201d<\/p>\n

\u201cWhen I came to UConn Health, I finally felt supported,\u201d Cook said. \u201cAt my first clinic visit, I saw everyone\u2014the neurologist, physical therapist, occupational therapist, speech therapist, and social worker. They came to me, one after another, in the same room. It was overwhelming in the best way possible.\u201d<\/p>\n

\"Headshoot
Dr. Cristina Viguera Altolaguirre, is a neurologist at UConn Health.\u00a0 (Tina Encarnacion\/UConn Health Photo)<\/figcaption><\/figure>\n

The\u00a0multidisciplinary\u00a0clinic\u00a0began as a half-day\u00a0in early 2025 and quickly gained momentum. Under the leadership of Dr. Cristina Viguera\u00a0Altolaguirre,\u00a0<\/span>who joined UConn Health in 2024 and leads the\u00a0clinic<\/span>\u00a0that\u00a0was\u00a0initiated\u00a0and expanded to a full-day model in response to growing demand.\u00a0Modeled after the Muscular Dystrophy Association\u2019s (MDA) multidisciplinary clinic model used at major academic institutions\u00a0nationwide,\u00a0it is UConn Health\u2019s first program of its kind and one of only a few in Connecticut.<\/span><\/p>\n

Each patient visit is supported by a robust multidisciplinary team that includes neurologists, physiatrists, nursing, physical and occupational therapy, speech therapy, respiratory testing, nutrition, social work, and palliative care.<\/p>\n

Dr. Viguera\u00a0Altolaguirre\u00a0said the program was designed to meet an urgent and previously unmet need in the\u00a0community.\u00a0\u201cThese are chronic, often progressive diseases that affect every aspect of a person\u2019s life\u2014mobility, breathing, nutrition, emotional health, and family,\u201d said Viguera\u00a0Altolaguirre. \u201cThe traditional model of care can be fragmented. This clinic brings everyone together in one coordinated, compassionate approach.\u201d<\/p>\n

Patients stay in a single room during their visit while specialists rotate through, each evaluating and documenting their findings before regrouping to create a unified plan.<\/p>\n

\u201cIt\u2019s a true team effort,\u201d said Viguera\u00a0Altolaguirre. \u201cWe\u2019re\u00a0all communicating face-to-face in real time, which allows us to\u00a0identify\u00a0needs, problem-solve, and deliver consistent care.\u00a0It\u2019s\u00a0better for patients, and the outcomes and satisfaction reflect\u00a0that.\u201d<\/p>\n

Cook said her first day at the clinic was a turning point. \u201cIt\u2019s\u00a0a long\u00a0day, but everything happens right there,\u201d she said. \u201cThey referred me for home services and helped us get the right equipment. Before, my husband was lifting my manual wheelchair in and out of the car, which was exhausting for him. Now I have a power chair\u00a0that\u2019s\u00a0built for my needs.\u00a0It\u2019s\u00a0changed both of our lives.\u201d<\/p>\n

\"a
Cheryl Cook is surrounded by the love of her family. (Photo provided by Cheryl Cook)<\/figcaption><\/figure>\n

Her husband,\u00a0mother,\u00a0three adult\u00a0children,\u00a0brother,\u00a0sister, and brother-in-law have been by her side through every step. \u201cThey\u2019ve been my rock,\u201d she said. \u201cThis disease affects all of us, not just me.\u201d<\/p>\n

Despite her diagnosis, Cook\u00a0remains\u00a0active in the Simsbury community, continuing to\u00a0participate\u00a0in civic and volunteer efforts close to her heart. \u201cStaying engaged gives me purpose,\u201d she said. \u201cI\u2019ve always believed in giving back, and that hasn\u2019t changed.\u201d<\/p>\n

Recognizing that impact, the clinic integrates social work and palliative care from the very first visit, ensuring families and caregivers receive support and guidance.<\/p>\n

\u201cOur social worker meets every patient,\u201d said Viguera\u00a0Altolaguirre. \u201cWe address caregiver stress, financial barriers, and emotional coping. Palliative care helps patients navigate\u00a0difficult decisions\u00a0about feeding tubes, ventilation, and future planning\u2014always at their own pace and comfort level.\u201d<\/p>\n

The ALS and MD Program has seen rapid growth, drawing patients from across Connecticut and\u00a0beyond\u2014including\u00a0those transitioning from other facilities, new diagnoses, and people moving into the area. Patients range from young adults in their 20s to seniors in their 70s living with ALS, while those with muscular dystrophy may be pediatric or adult. Some, like those with spinal muscular atrophy, are now living longer and more independent lives thanks to advances in treatment.<\/p>\n

\u201cUConn Health\u2019s ALS and MD clinic fills a major gap in Connecticut\u2019s neuromuscular care,\u201d said Hernandez. \u201cWe\u2019re providing the kind of comprehensive, coordinated care these patients deserve\u2014and doing it close to home.\u201d<\/p>\n

\"woman
Staying active in the Simsbury Community has helped Cheryl Cook. (Photo provided by Cheryl Cook)<\/figcaption><\/figure>\n

For Cook, the care team has made a profound difference. \u201cI\u2019ve accepted what\u2019s happening, but I\u2019m not facing it alone,\u201d she said. \u201cDr. Hernandez, Dr. Viguera, and everyone at UConn Health treat me with compassion and respect. They care about my life, not just my diagnosis.\u201d<\/p>\n

\u201cEvery\u00a0patient\u2019s\u00a0journey is different,\u201d said Hernandez. \u201cBut our goal is the same\u2014to make sure no one faces these diseases without coordinated, expert, and compassionate care.\u201d<\/p>\n

Cook agrees. \u201cWhen I leave\u00a0clinic, I feel like I have an entire team behind me,\u201d she said. \u201cThat\u2019s what keeps me going.\u201d<\/p>\n

Cook\u2019s experience highlights the difference a truly coordinated, patient-centered approach can make for those facing ALS and other neuromuscular diseases. Through UConn Health\u2019s ALS and Muscular Dystrophy Program<\/a>, patients like Cook gain access to a full team of specialists working together to address every aspect of care\u2014medical, emotional, and practical\u2014so they and their families never have to navigate the journey alone. As the program continues to grow, it stands as a model of comprehensive, compassionate care, offering patients hope, support, and the strength to keep moving forward.<\/p>\n","protected":false},"excerpt":{"rendered":"

Comprehensive, Compassionate Care for Patients and Families Facing ALS\u00a0<\/p>\n","protected":false},"author":139,"featured_media":238121,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_crdt_document":"","wds_primary_category":0,"wds_primary_series":0,"wds_primary_attribution":0,"footnotes":""},"categories":[2284,2672,2288,1868,179],"tags":[],"magazine-issues":[],"coauthors":[2209],"class_list":["post-238111","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-brain-spine-institute","category-healthcare-reimagined","category-neurology","category-meds","category-uconn-health"],"pp_statuses_selecting_workflow":false,"pp_workflow_action":"current","pp_status_selection":"publish","acf":[],"publishpress_future_action":{"enabled":false,"date":"2026-04-25 07:55:17","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"category","extraData":[]},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"_links":{"self":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/238111","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/users\/139"}],"replies":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/comments?post=238111"}],"version-history":[{"count":10,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/238111\/revisions"}],"predecessor-version":[{"id":238601,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/238111\/revisions\/238601"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media\/238121"}],"wp:attachment":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media?parent=238111"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/categories?post=238111"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/tags?post=238111"},{"taxonomy":"magazine-issue","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/magazine-issues?post=238111"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/coauthors?post=238111"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}