A Day in the Life at Home with ALS – The Tyler Family

Larry Tyler from O’Fallon, Missouri, was a loving husband, father, grandfather, devoted friend, coach, and a successful businessman who traveled the world. Larry was diagnosed with ALS in 2014 and passed away just over 18 months later. Despite all the hurdles he faced, Larry managed to keep his sense of humor and faith, while this devastating disease ravaged his body, slowly paralyzing him and eventually robbing him of his life.

To raise awareness and support for this largely unknown and underfunded disease, Larry and his family sought to put an emotional face on the bitter reality people with ALS and their loved ones face daily.  They contacted family friend and photographer, Sarah Howell of Sarah E Studios, who generously chronicled the highs and lows of the 24-hour care Larry required in his daily battle with ALS.

The Tyler family shared their photos with The ALS Association St. Louis Regional Chapter, who then shared their story with the world. The below images are just a few of the hundreds taken that day. They tell a vivid story in photographs of what an ordinary day was like for Larry and his family: the emotional highs and lows the help needed to move Larry; his regular feedings, the immense decisions surrounding his care; and the incredible support of his family and friends.

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Larry and daughter Teri studying an alternative communication device.  People with ALS can experience difficulty with speech and movement during the course of their illness and many times rely on technology to communicate with their loved ones. Without this assistance, a person with ALS can become isolated and emotionally devastated, unable to make their needs or wishes known to their loved ones.

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People with ALS are unable to chew or swallow solid food and require a feeding tube for nutrition support. Here, Larry’s wife Judy prepare liquid supplements for Larry’s feeding tube to help slow down severe weight loss and avoid the malnutrition that accompanies ALS.

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Larry and his friends and family during a care management conference with their ALS Association care services coordinator, Ashley Callahan. This collaborative process involves developing an individualized plan of care to help assist in navigation of the healthcare system, increase functional independence, reduce financial stress on families, as well as provide assistance for caregivers.

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ALS is a progressive illness, and as the disease progresses, the level of care also increases. Having to provide 24 hour a day, seven days a week care can exact an enormous emotional and physical toll on the caregiver. Larry’s wife and primary caregiver Judy, was hospitalized with bleeding ulcers and a herniated disc just weeks after these photos were taken.

 

ALS weakens respiratory muscles, eventually robbing people of their ability to breathe. Larry is using a BIPAP machine – a non-invasive mechanical ventilation device – to help pump additional air into his lungs.

We would like to end with a compilation video showing in detail of Larry’s daily life with ALS. There was an immense amount of time and care needed to take care of Larry and everything was done with endless love and tenderness.

Thank you to the Tyler family and St. Louis Regional Chapter for sharing this important story.

The Tyler’s are one of the thousands of families impacted by ALS. Over 6,000 people a year are diagnosed with ALS in the U.S. and approximately 20,000 Americans have the disease at any given time. Please donate today to help the thousands of people battling this devastating disease.

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Photography by Sarah Howell / © Sarah E Studios. Visit her page on the web at www.sarahestudios.com

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