Mike White, a 46-year-old Persian Gulf War veteran, has amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease. It is a fatal motor-neuron disease that results in paralysis and, often, respiratory failure. Mike needs help with everyday tasks, from getting ready in the mornings, to eating. His family has gone through CPR training to prepare for when Mike’s lungs slowly shut down. Mike has periodic appointments with a neurologist, and at each appointment he has less control over his body. The disease kills most people between two and five years after diagnosis. Mike was diagnosed in February 2011.
Mike White, a 46-year-old Persian Gulf War veteran, has amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease. The malady shuts down nerve cells in the brain and spinal cord responsible for muscle movement, impacting a person's movement by destroying the brain's ability to communicate with the muscles, as if a telephone wire had been cut. This leads, ultimately, to total paralysis. In the end, patients have to rely on machines, devices and other people to move, eat, talk and breathe. One of the worst aspects of ALS is that disease doesn’t impact a patient’s brain. A person with the disease knows full well that their body is slowly deteriorating. Most people with the disease die from respiratory failure between two and five years after diagnosis. Mike was diagnosed in February 2011. He can still talk softly and lift his hands a little, but he can’t walk or stand on his own.
Living with ALS is a practice in patience and futility. Mike cannot do anything on his own. The tasks that most people take for granted, such as scratching an itch or getting a drink, are impossible for him. His family members are his primary caregivers, and one of them must always be at his house. So he will shout for whichever family member is with him that day. Until they hear him and come over, he can’t get what he wants. For his caregivers, it’s like looking after a child who has the mind and memories of a middle-aged man. They lift food and drink to his mouth, perform everyday chores, change the television channel, help him go to the bathroom and dozens of more tasks. In the mornings, someone has to lift him out of bed, brush his teeth, shower him and dress him for the day.
Science still can’t explain why the vast majority of people get ALS. About 10 percent of cases are hereditary and the rest are explained by theories, such as exposure to environmental toxins, genetic susceptibility and a lifestyle of physical activity. Studies have shown that military veterans are up to twice as likely to get ALS compared to the average American, but no one knows why. In 2008, the Department of Veterans Affairs announced that if you are a vet and you get ALS, military service might be to blame. The Centers for Disease Control say there's no precise count but estimate 20,000 to 30,000 Americans are living with the disease, about 2,000 of whom are veterans.
It isn’t just the person with the disease whose life is changed forever. Everyone around Mike — his parents, sister, children, wife and friends — had to adapt. Some were willing to help. Others, including some of his friends and his wife at the time of diagnosis, couldn’t adjust, and had to remove themselves from Mike’s life. As Mike told me, the disease “let me know who’s truly a friend and who’s truly an acquaintance.â€