Early ALS Symptoms Every Woman Over 50 Should Know, According to a Harvard Doctor

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, has been in the headlines lately, owing in large part to former Grey’s Anatomy actor Eric Dane opening up about his battle with the condition. Inspired by his health battle—and the 30,000 Americans living with the disease—we wanted to learn more about ALS symptoms and whether they manifest differently in women. Here, a leading physician shares everything you need to know about ALS, including the new breakthrough treatment for a specific form of the illness.

What is ALS?

ALS is a fatal neurodegenerative disease, progressively affecting the nerve cells that control movements, explains Sabrina Paganoni, MD, PhD, Associate Professor at Harvard Medical School and physician scientist at the Healey & AMG Center for ALS at Massachusetts General Hospital. “And because we have muscles in every part of the body, the reality is that over time, most of the body will be affected,” she notes.

This means that as ALS progresses, people will eventually lose the ability to do everyday tasks we take for granted, like holding a pen or walking the dog, she continues. And eventually, the most fundamental functions needed to sustain life, like breathing and swallowing, will also deteriorate.

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Contrary to popular belief, only about 15 percent of those with ALS have some family history of the condition. Though it can strike at any age, the number one risk factor is age, Dr. Paganoni reveals. “​​So, as the population gets older, we’re probably going to see an increase in the total number of cases simply because we’re living longer.”

Early symptoms of ALS

Dr. Paganoni says a few of the most common ALS symptoms include: 

• Balance difficulties or a tendency to fall 
• Foot drop, which is not being able to control your ankles or lift your foot
• Unexplained weight loss: Research suggests that ALS patients who are a little heavier tend to do better, she says. “It’s not fully understood why, but it’s possible that by having more ‘reserves,’ people preserve a bit of strength,” she explains.
• Muscle twitches: This doesn’t mean a single muscle cramp or muscle spasm, Dr. Paganoni notes. “It’s more diffuse [in various muscles throughout the body] and the cramping will continue to get worse.”
• Decreased hand dexterity: She says this may include dropping objects or difficulty using tools that require fine motor skills like a nail cutter.

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Are ALS symptoms in women different compared to men?

In the main, the answer is no—yet there is one exception to that rule. Before we get to that, however, Dr. Paganoni points out that ALS is more common in men. “It breaks down to about 60 percent men to 40 percent women, but we don’t fully know what accounts for this difference,” she acknowledges.

While it’s important to emphasize that ALS symptoms are generally the same in both sexes, she notes that women over 60 are slightly more prone to what’s known as bulbar-onset ALS (rather than limb-onset), whose initial symptoms affect the face, causing difficulties with speech and trouble swallowing.

These changes are subtle at first, she continues. “In the beginning, someone may sound just a little bit off, for example, slower or slurred speech or a lower tone in their voice. This is due to the muscles [in the face and larynx] not working properly, so they can’t continue supporting the very fine motor control necessary for speech.”

It’s important for doctors to do a full evaluation and conduct tests to make sure there isn’t a vocal cord issue or other ENT (ear, nose and throat) problem that can affect speech.

Breakthrough new AI technology can mimic a patient’s voice

In the case of ALS, there’s no way to reverse these changes, but technology can help reproduce patients’ voices. “If someone has lost the physical ability to speak, it is now possible to use AI software and other apps to essentially clone their voice by using short recordings from the past,” Dr. Pagnoni explains. “This technology sounds quite natural and similar to the original voice.” For more information on these services, visit The ALS Association.

How long does it take to get an ALS diagnosis?

ALS is considered a diagnosis of exclusion, meaning other conditions need to be ruled out before it’s diagnosed. “For example, there might be a problem with the spine that causes foot issues or something like carpal tunnel syndrome—which is obviously much more common than ALS—that can decrease dexterity,” Dr. Paganoni explains.

She adds that, unfortunately, this process is largely why it typically takes a year to get a diagnosis after the first ALS symptoms appear.

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What kinds of ALS treatments are available?

Until just a few years ago, it was widely held that early interventions don’t have much of an impact on ALS. But recent advances have caused a “paradigm shift,” observes Dr. Paganoni.

“There are some treatments that can actually make a difference,” she says. “For example, a breakthrough happened in 2023 when tofersen, the first medication targeted to a specific genetic form of the disease, was approved.”

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She adds that tofersen injections work by targeting mutations in the SOD1 gene that produce a toxic protein. “This medication targets the very core of the disease.”

Unfortunately, when it comes to the more common non-genetic forms of ALS, the treatments are far less effective, she continues. “They’re not transformative, but two common medications, riluzole and edaravone, do try to balance what’s going wrong in the cells. And some data suggest the earlier one starts on them, the better.”

Ongoing research and hope for the future

“Thanks to continued advances and early interventions like physical therapy, speech therapy and technological devices such as brain-computer interfaces, we can definitely help people and support their ability to interact with others,” assures Dr. Paganoni. “We can’t give someone their strength back, but we can give them tools to improve their quality of life.”