Living with ALS can be easier
While a diagnosis of amyotrophic lateral sclerosis, or Lou Gehrig’s disease, is extremely frightening for patients, there is ongoing research, new technology and medications to help make life easier.
“While we are waiting for a cure, people need to know that a lot can be done to make life easier and longer for people with ALS,” says Dr. Robert G. Miller, the lead author of guidelines on treating ALS that are published by the American Academy of Neurology in the Oct. 13 issue of the medical journal Neurology.
ALS is a rapidly progressive and fatal neurologic disease that attacks the nerve cells controlling voluntary muscles, or the muscles a person can control. These muscles – for example, the arms, legs, and throat – eventually stop working. About 10 percent of people diagnosed with ALS will live 10 years or more, significantly longer than the three to five years typically predicted.
Tom Kobler, 57, of Eden Prairie, Minn., noticed he didn’t have good control of his left foot in the spring of 2007, and received an official ALS diagnosis in May 2008.
“I had a lot of people at work asking why I was limping,” he says. “I first thought I had lower back issues.”
In addition to seeing his regular physician, Kobler attends an ALS clinic at Mayo Clinic on a quarterly basis to meet with several specialists, including a neurologist, dietician, speech pathologist, swallowing specialist, nurse and a physiatrist (a doctor of physical therapy). They anticipate together the challenges he will face over the next several months, and plan ways to get around those challenges.
“I probably see seven people over the course of four to five hours at that clinic, and they’re all talking to each other,” Kobler says. “[ALS] symptoms can progress quickly. Knowing what you can do with the use of various types of equipment is very helpful. We try to anticipate when my weaknesses would come and have the equipment in place as I need it.”
Dr. Miller says research affirms the importance of multidisciplinary care. “Attending a multidisciplinary clinic will likely increase survival and access to treatments, and may improve quality of life,” Miller says. Several ALS clinics have met standards set by well-known medical organizations, and if you’ve been diagnosed with ALS, your doctor can help guide you in finding a clinic in your area you can work with.
Kobler has been involved in reviewing the last decade of ALS research and agrees with Dr. Miller. “In my battle with ALS, I have tried to anticipate my family’s future needs to make living with ALS as manageable as possible. That is not something easily done, but with frank conversations with my medical team at Mayo and at home, we have been fairly successful in having the equipment and expertise on hand when needed to allow me and my family to enjoy my remaining life as fully as possible,” he says.
One guideline identified by the American Academy of Neurology recommends people with ALS use the drug riluzole, which slows the rate at which the disease progresses. It is the only drug approved by the U.S. Food and Drug Administration to treat ALS, and has a modest effect on prolonging survival.
As ALS progresses, it starts affecting the muscles in the mouth, which can cause eating, talking and drooling issues. The drug botulinum toxin B is recommended by the Academy for patients who are suffering from sialorrhea – also known as drooling – if oral medications aren’t working.
Kobler’s disease has limited him to a wheelchair, but he continues to prepare for future needs. He says any equipment that allows him to conserve energy helps.
“More recently we have gained access to a lift that lifts me out of bed and into my wheel chair,” he says. “I have also recorded my voice for certain requests – ‘I need water,’ ‘I’m cold,’ ‘I need to go to the bathroom.'”
Recent studies indicate the disease typically proceeds to affect the muscles that control breathing, so people with ALS have problems getting enough oxygen. People with ALS who use an assisted-breathing device usually have increased life expectancy and may have better quality of life. Longer life expectancy is also likely for people with ALS who use a feeding tube known as a PEG tube, since nutrition plays a critical role in extending survival.
People with ALS who develop thinking or behavioral problems will be less likely to initially accept treatment with an assisted-breathing device or a PEG tube. Doctors need to approach these people differently to help them accept these treatments.
The cause of ALS is still a question mark, and it’s not known why the disease strikes some people and not others. About 30,000 Americans are currently diagnosed with ALS.
Courtesy of ARAcontent