Myths About ALS

MYTHS ABOUT ALS

By Jeffrey D. Rothstein, MD, PhD

Neurologist and professor at Johns Hopkins University and director of the University’s Brain Science Institute, ALS clinic and Robert Packard Center for ALS Research.

MYTH 1: ALS IS CAUSED BY LYME DISEASE OR OTHER INFECTIONS.

Because ALS symptoms include fatigue, muscle weakness and muscle twitches, early on it can look like other very treatable illnesses. One that commonly comes up is Lyme disease, an infectious disease resulting from a tick bite. Unlike ALS, Lyme is usually treatable with antibiotics. Lyme disease does not cause ALS, and generally in a diagnostic workup, a neurologist can easily separate ALS from Lyme infections, either clinically or with testing.

MYTH 2: ALS ONLY AFFECTS MOTOR ACTIVITY.

This is a long-standing myth held by physicians and patients: that ALS patients’ minds remain sharp as their bodies deteriorate. But newer studies show that about 20 to 30 percent of patients develop a mild cognitive impairment, while a very small number, about 5 to 10 percent, get severe dementia.

MYTH 3: ALS IS A DISEASE OF OLD PEOPLE.

This idea comes from the observation that older people get degenerative diseases such as ALS, Alzheimer’s and Parkinson’s, and those who become the public faces of the disease are typically older. But the median age for the onset of ALS is only 54. Lou Gehrig was diagnosed in his mid-30s and passed away from ALS at age 38. The age range for developing ALS is large, from teenagers to as old as one can get.

MYTH 4: ALS IS CAUSED BY SPORTS.

We don’t know if this is true for all sports. Some data suggest that football players are at higher risk to develop ALS, but more research needs to be done to see how widespread that risk is for other contact sports. There have been a number of prominent young athletes with ALS, starting with Gehrig. And Steve Gleason, formerly a defensive back with the New Orleans Saints, has wonderfully shown how patients can fight the disease, using various tools to help them communicate when their vocal muscles start to fail, while they await better therapies to stop or reverse the disease. There is incomplete research suggesting that a career in professional sports may increase a person’s likelihood of getting ALS, possibly because of trauma to athletes’ nervous systems. But most others who get the disease are relatively inactive. Some have thought that exercise makes ALS worse, but as best as neurologists can tell, muscle activity will not worsen the disease. In fact, an ongoing study at the Johns Hopkins ALS clinic is trying to determine if regular, simple exercise can slow the progression of ALS. For some patients, exercise can quickly make them very tired, but there is no good evidence that exercise speeds up the disease.

MYTH 5: THERE IS NO CURE FOR ALS BECAUSE NO COMPANY CARES ABOUT FINDING ONE.

This idea stems from the fact that we have so few drugs that slow the progression of ALS. Only two FDA-approved drugs exists for ALS – and it reins in the disease only modestly. Since then, there have been many clinical trials of medications designed to slow ALS, but all have failed, in part because of incomplete understanding of the disease. Despite such setbacks, there has been a significant increase in the number of pharmaceutical companies that are interested in ALS and have the right experience to carry out research and clinical trials. This rising interest over the past few years may reflect the exciting discoveries about ALS and the new tools to study it, one of the most important being stem cell patients. These cells may better reflect the disease and allow better drug development. ALS research is largely funded by the National Institutes of Health and many nonprofit organizations.