With heavy hearts, The ALS Association joins the ALS community in celebrating the legacy and mourning the loss of Pete Frates, who died Monday at age 34 after a seven-year battle with ALS. Pete lived a Hall of Fame life.
As no two cases of ALS are the same, nor are any two ALS caregivers. There is no one-size-fits-all answer to each caregiver question, but that is not to say there isn’t much to be gleaned from the experiences of others.
Navigating the world of healthcare and insurance, especially Medicare, can be very complicated and overwhelming. It's important to make the right decisions when it comes to health insurance plans and to understand the available options that could impact the critical care you need.
Progress is being made. Never before in the history of this disease have we seen so many talented scientists and researchers, ALS advocates, and health care professionals, working together, providing even more hope for the families we serve.
No two cases of ALS are the same, nor are any two ALS caregiver experiences. While there is no one-size-fits-all answer to every caregiver question, there is often much to be learned from people who are, or who have been, a caregiver for someone with ALS. As National Family Caregivers Month comes to a close, we wanted to take a moment to highlight some of the advice, resources, and support available for ALS caregivers all year long.
This week is Malnutrition Awareness Week, an opportunity to remind everyone of the role proper nutrition plays in a person’s health and the importance of early detection, intervention and treatment of malnutrition for people living with ALS and their caregivers.
Jake met Bill Wechsler during his freshman year in high school in Holliston, MA. Challenged with academic and mental health issues at the time, Jake was referred to Bill who was the school social worker for counseling and support. By the spring of his junior year, Jake had made so much progress he no longer needed the formal counseling he had become accustomed to, but he still frequently visited Bill to spend time talking with him. It was around that same time that Bill was diagnosed with ALS.
When Christian James was heading to the neurologist at the University of Cincinnati Medical Center, his son, a student at UC at the time, met up with him for the appointment.
Two days before her birthday in January 2018, Susan Hoerber was diagnosed with ALS. “I was symptomatic for about four years. I knew there was something terribly wrong,” she said. Susan first noticed her symptoms when she struggled to hold a fishing pole. “I was an avid fisherman and outdoors person,” she said. “That's the first time I got kind of scared and I went to the neurologist.”