People living with ALS eventually lose the ability to speak to their loved ones and friends. In partnership with Prize4Life, we initiated the ALS Assistive Technology Challenge to improve the lives of people with ALS.
Today, we are pleased to be joined by a wonderful ALS advocate Rob Robertson from Belleville, Ill. Rob proudly served our country in the U.S. Army for many years that included time in an elite fighting force “The Screaming Eagles.” He and his family faced many challenges over his lifetime, but nothing could have prepared him for his ALS diagnosis.
For National Family Caregivers Month, we are featuring David and Laura DuBois. David is living with ALS, and his wife Laura is his primary caregiver. As simple as it might sound, their conscious decision to truly LIVE with ALS is what has allowed them to face each challenge and each day, together.
As with hundreds of thousands of veterans, Michelle served her country honorably, eventually attaining the rank of captain, and moved on to a civilian life of work and family. But life wasn’t done with twists and turns for Michelle. In 2011, she began experiencing some muscle twitches. She didn’t think much of it at the time, and certainly didn’t suspect anything serious. “The chances of having ALS are miniscule and I never dreamed that would be my diagnosis,” Michelle says. But it was.
Thirty-seven-year-old Melissa is a mother to Anthony (14) and Lauren (9). She’s been living with ALS for two years. “I can’t say that I parent any different [since being diagnosed with ALS],” Melissa said. “As a parent, you have to pick and choose your battles and I’ve never been one to sweat the small stuff. But I can see how much my diagnosis has made my children grow and mature.”
My husband Russ and I were married in 1984 and were raising our boys Kyle and Dylan in the home Russ and my father had built together. Life was good. Until ALS upended everything.
While recent years have brought a wealth of new scientific understanding regarding the physiology of ALS, there is still some mystery and misinformation surrounding the disease.
The ALS Disability Insurance Access Act went into law Tuesday, removing the 5-month delay for people with ALS to access the Social Security Disability benefits. This marks the culmination of a multi-year fight by ALS advocates across the country.
ALS Focus™ is administered by the ALS Association with direct input and guidance from members of the ALS Focus Steering Committee and the Patient and Caregiver Advisory Committee (PCAC).