A Day in the Life at the ALS Clinic – The Berkley Family

Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.

Before diagnosis, Carmen kept busy as a unit secretary on the oncology floor at Barnes-Jewish Hospital in St. Louis and took care of her elderly father. Now, her husband Charles and two daughters, Jamia and Camille, take care of her.

People with ALS must deal with multiple challenges – a gradual loss of movement, speech, and, eventually, the ability to breathe. When people with ALS have adequate support and services to manage these constantly changing health care needs, their quality of life is improved.

Carmen regularly visits The ALS Association-supported Certified Center of Excellence clinic at Saint Louis University, where she receives supportive care from a team of trained health care professionals who can attend to the needs of people living with ALS. Carmen’s health care team, including neurologist Dr. Ghazala Hyatt, collaborate and offer a comprehensive treatment plan to help ease the impact of ALS on her body.

This ALS Association clinic, with the help of our staff like Mary Riggs, Director of Programs and Services for Clinics, Care, and Research, and Tara Klucker, Program Director of Community Outreach, Public Policy, Evaluation, and Data Governance, provide state-of-the-art care that emphasizes hope and quality of life, so Carmen can live her best life.

Carmen recently visited her ALS clinic and allowed her day to be documented. She has agreed to share with our community what it is like to visit one of our clinics.

As Carmen said, “I am not giving up.” Neither are we at The ALS Association. Please host your own Facebook holiday fundraiser to help us empower the thousands of people living with ALS – like Carmen – to live their lives to the fullest.

Photography by Sarah Howell / © Sarah E Studios. Visit her page at www.sarahestudios.com. Music by Kevin MacLeod. Thank you to Carmen and her family and The ALS Association St. Louis Regional Chapter for sharing this important story.



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