Many ALS patients only get a few years to live after their diagnosis, but Dr. Doug Tilley is an exception. Diagnosed with ALS (amyotrophic lateral sclerosis) in 2010, he is beating the odds every day and doing it with an amazing attitude. Doug and his wife, Cathy, credit the CarePartners Home Health team for their ability to care for Doug at home.
A minister for 36 years, Doug retired from Malvern Hills Presbyterian church in Asheville in 2011. He is now in his seventh year of living with ALS – a debilitating, incurable disease that eventually robs the body of its ability to nourish its muscles.
As a result of the disease, Doug (age 67) is paralyzed from the neck down, breathes with a ventilator and requires constant care. His home health team consists of registered nurses, certified nursing assistants and respiratory therapists. “We have been able to keep Dr. Tilley at home and out of the hospital for the past two years,” said Nore Hunter, RN, and Clinical Resource Nurse Educator with CarePartners.
“We love CarePartners,” said Doug. “Everyone who comes out quickly becomes a friend. We look forward to them coming.” Cathy agreed: “They all have a loving, sweet attitude and are a pleasure to have with us.”
Rehabilitation, Recovery and Routine Care
The CarePartners Home Health team first visited Doug in 2015 after he had a tracheotomy to extend his life. “Only a small percentage of ALS patients choose to have a tracheotomy,” said Doug. Many patients choose not to because they feel their bodies are too far gone, he explained. “I felt that God was sustaining me every day, and I still had a lot to live for, so I chose to get the tracheotomy.”
After the operation, Doug lost the use of his voice for nine months. During that time, he was visited by a CarePartners Home Health team members including a physical therapist, speech therapist and respiratory therapist.
“They were amazing,” said Doug. Eventually the secretions covering Doug’s vocal cords were controlled through medication, and he regained use of his voice.
“Today, the CarePartners team assists Doug and his family with a wide variety of healthcare needs ranging from changing out his complicated tracheotomy tube to skin care to prevent pressure ulcers,” said Hunter.
“The CarePartners Home Health team makes it easier for us,” said Doug. “They take care of a lot of things I might have had to go to the doctor’s office for, like drawing blood. I’m totally paralyzed from the neck down, it’s not easy to get me to a doctor’s office.”
“We offer numerous services through multiple resources, and together we’ve helped him go above and beyond the typical prognosis of ALS,” said Hunter. “We keep working on ways to keep him out of the hospital and improve his quality of life.”