Amyotrophic lateral sclerosis, known as ALS or Lou Gehrig’s Disease, is a progressive, neurodegenerative disease that is 100% fatal. More than 5,000 people are diagnosed with ALS every year. The average life expectancy is 2-5 years, but some live longer. There is no cure.
RVNA is caring for a growing number of patients with neuromuscular disorders, including ALS. In fact, over the last six months, we have cared for six ALS patients. One of these patients, a beloved wife and mother of two, passed away in April after receiving our services for two and a half years.
Ann was diagnosed with bulbar onset ALS in April 2014, a form of ALS that first affects speech and swallowing, before spreading to other parts of the body. She was a young and vibrant woman, a human welcome wagon in her community. She was a voracious reader and lover of books, librarian, teacher, coach and fabulous cook. She was an active member in her church and sang in the choir. She was an outstanding athlete — a force to be reckoned with on the golf course and tennis courts, the slopes and the ice. She played competitive ice hockey until muscle weakness and atrophy made it too difficult to skate. Her disease was managed for a year and a half, before frequent choking and trips to the ER necessitated a tracheostomy. Her life then changed forever.
It takes a village to care for someone with ALS. For Ann, RVNA was this village. Weakness, immobility and a feeding tube required round-the-clock care. She received this from her loving family and routine visits from her RVNA nurse, occupational therapist, speech therapist and physical therapist. As she struggled with the complications of this progressive disease, our clinical team made it possible for Ann to remain living safely in the comforts of home, alongside her family, the only place she wanted to be.
Each and every day, RVNA is in the homes of people in your community, caring for many diverse medical needs, thanks to you. RVNA now provides home healthcare to more than 1,600 patients annually, 60% more patients than five years ago. We need your continued help to pay for programs and services which are not covered or reimbursed by private insurance, Medicare or Medicaid. Your contributions also help to keep our nurses and therapists trained and certified in the latest medical skills and caregiving techniques, so that patients like Ann can receive the specialized care they need.
It was RVNA’s privilege to care for Ann — to protect her independence and honor her desire to live out her days with dignity at home. For Ann, RVNA gave her the best quality of life possible. We are here to do the same for you and your loved ones.
Ann never gave up on life and her effort to live. She fought to the very end. Together, we can help more patients live through the challenges of degenerative disease, sustain those living with chronic illness, and care for those acutely ill or recovering from surgery — from birth to end-of-life.
RVNA meets you wherever you are in life, whatever your healthcare needs might be. Please consider a gift to RVNA today.
Theresa Santoro, MSN, RN, CHCA
President and CEO
P.S. A gift match from your employer will make your gift go twice as far. Please be as generous as your means allow.