ALS, or Lou Gehrig's disease, affects up to 30,000 people every year. A Navarre woman who recently lost a loved one to ALS wants more people to know the toll it takes. Mandi Bailey sets the scene by saying "It's the longest goodbye you can ever imagine..."
Bailey wasn't ready to say goodbye to her stepfather Fred Drinkwater. But in just over a year, she watched Amyotrophic Lateral Sclerosis, or ALS, change him from a vibrantly healthy man to one who was completely immobilized. He lost his ability to work and provide; eventually, he was unable to care for himself. Bailey said, "It strips you of every bit of independence you have, every bit of dignity you have."
Fred's first symptom was weakness in his arms and an inability to grip with his hands. The disease advanced to his legs, eventually forcing him into a wheelchair. As he kept losing strength and mobility, Fred and his family were tortured by feelings of powerlessness. Bailey continued, "Because the disease, it attacks every little bit of your body, every nerve cell, and it paralyzes you slowly."
One of the toughest moments she remembers was struggling to find words when her daughter said 'I just want my Paw-Paw to be better'. She said, "I wish I could, but I can't....I can't make the person that hung your moon and stars better. I can't heal your hero."
ALS attacks the neurons that control voluntary muscle movement. There is no cure. Patients in later stages can become totally paralyzed. Fred Drinkwater passed away in February when the disease progressed so far he couldn't breathe.
May is ALS awareness month. Bailey wants people to know what her family went through, so they'll press for a cure. She said, "For not as many people to be aware of this disease, it's a shame, an absolute shame."