Everything You Need to Know About ALS and Medical Alerts

Lou Gehrig was one of the original power hitters in baseball. Nicknamed “The Iron Horse,” he played first base for the New York Yankees for 17 seasons, beloved by fans and fellow players alike. He was part of six World Series winning teams, inducted into the Baseball Hall of Fame, and was the first Major League Baseball player to have his uniform number retired[1].

But what he is probably best remembered for is the short speech he gave to a loving crowd at Yankee Stadium after he was diagnosed with ALS[2]:

“For the past two weeks you've been reading about a bad break. Today I consider myself the luckiest man on the face of the earth. When you look around, wouldn't you consider it a privilege to associate yourself with such fine-looking men as are standing in uniform in this ballpark today? I might have been given a bad break, but I've got an awful lot to live for. Thank you.”

He gave that speech when he was 36 years old. Today, amyotrophic lateral sclerosis – ALS – is often known as Lou Gehrig’s Disease.

What is ALS?

The National Institute of Neurological Disorders and Stroke defines ALS as a rare disease that affects the nerve cells that control voluntary muscle movement. These are the muscles that we choose to move, such as when we choose to walk or talk. ALS causes the gradual deterioration and death of motor neurons, the nerve cells that run from the brain to the spinal cord and then to muscles throughout the body. These neurons send messages to the muscles. With ALS, those messages stop traveling, and that leads to weakness, twitching, and wasting away of the muscles. Eventually, the result is losing the ability to make voluntary movements[3].

When ALS begins, sometimes it shows up in unexpected ways. Since it affects voluntary movements, that includes walking and all that entails, such as climbing stairs, stepping across thresholds, going for a jog in the neighborhood, and so much more. One of the first signs can be stumbling at unexpected moments or having an awkward gait. Of course, both can lead to falls. This is one of the most important reasons to get a personal emergency button alarm when you or a loved one is diagnosed with ALS.

Other signs of ALS include:

·         Muscle twitching in the arms, legs, shoulders, or tongue

·         Muscles that feel tight and stiff

·         Muscle cramps

·         Muscle weakness in the arms, legs, neck, or diaphragm

·         Nasally or slurred speech

·         Trouble with chewing or swallowing

Gradually, the muscle weakness begins to spread to other parts of the body. Medical alert systems with fall detection are an excellent option to help you feel more confident and stay independent longer. There will come a point where a family caregiver is essential, and eventually, a professional caregiver might need to join the mix. Over time, those with ALS lose their ability to speak or eat, move around at will, and even take in a breath. Most people with ALS have a life expectancy of three to five years after diagnosis, though some live 10 years or more[4].

Risk Factors for ALS

Though most cases of ALS are sporadic, meaning that they seem to be random with no associated risk factors, about 5-10% of all cases are familial, with a genetic component. The genetic component was first discovered in 1993, and since then many more gene mutations have been identified that can cause ALS[5]. However, most cases continue to have no clear basis.

Risk factors for ALS include[6]:

·         Gender. Men are somewhat more likely to develop ALS than women are. However, that difference seems to disappear with age.

·         Race or ethnicity. Those who are Caucasian and non-Hispanic are more likely to have ALS.

·         Age. Though ALS can happen to anyone, the most common population to be diagnosed includes those between the ages of 55 and 75. (Unfortunately, scientists have even identified a genetic mutation that might lead to ALS in those as young as four years old[7].)

·         Military service. Some studies have found that those who have served in the military are up to two times more likely to develop ALS, which suggests that potential risks include lead exposure, pesticides, or environmental toxins. In fact, the U.S. Department of Veterans Affairs now recognizes ALS as a service-connected disease.

·         Smoking. According to the Mayo Clinic, smoking is a likely environmental risk factor for ALS. The odds get worse for women who smoke, particularly after they go through menopause.

There are many other factors that are currently being studied in the race to find a treatment or cure for ALS. Environmental factors are a big concern, including the lingering effects of viruses, physical trauma, certain diets, infectious agents, toxic agents, and certain behaviors or occupations. Strenuous activity might help explain why some athletes might be at increased risk, and exposure to toxins in war zones could explain why those in the military are more likely to develop ALS.

What are Treatments for ALS?

Unfortunately, there is currently no cure for ALS. According to Johns Hopkins, the FDA recently approved a drug that has shown to increase the longevity of those with ALS, but that’s the only treatment thus far that shows promise.

Most treatments concerning ALS right now include ways to keep individuals comfortable as the disease progresses. These include medications to fight the problems that arise, such as medications that relieve muscle cramps and excess salivation, physical therapy to combat muscle stiffness, exercise in moderation, speech therapy and communication training, grab bars and reach extenders to make mobility easier, nutrition counseling (especially when swallowing becomes an issue), and the use of heat to relieve muscle cramps[8].

Some aging in place home modifications, such as walk-in tubs with whirlpool jets, can be helpful when treating the symptoms of ALS. The heat and motion of the whirlpool can help ease the aches, pains, and cramps of muscles that are not getting the proper signals from the brain.

Staying Safe at Home with ALS

The progression of ALS often begins with weakness. This can happen anywhere in the body, but often starts in the hands. The weakness might spread to your legs as well, or it might be a full-body feeling – it depends on your particular progression of the disease. At the first sign of weakness, it’s vitally important to get checked out by your doctor.

It’s also important to begin taking care of yourself in different ways than you did before. Perhaps you didn’t think you needed a medical alert device because you were still spry and steady on your feet, no matter your age. But ALS can change that. It’s tough to know how strong you will feel from one day to the next, and the sudden weakness – which can lead to stumbling and falls – can come on when you least expect it.

Getting a medical alert pendant or SOS watch can help ensure that you can reach out for help when you need it. Alert1’s Command Center is available around the clock to respond to emergencies. If you have an emergency at two in the morning, push that button – you’ll get an answer, just like you would at two in the afternoon. Explain the situation and the professional at the Command Center will go through your list of contacts and get you the help you need, whether it’s a friend, neighbor, care team, family caregiver, or emergency services.

If you have ALS, getting a fall detection device is a very good choice. Fall detection technology makes use of tiny fall sensors in the device. In this case, the fall alert pendant itself can signal the Command Center and get someone on the line for you, even if you can’t press the button on your own. This extra layer of protection means that even if you can’t press the alert button, you can still trust that emergency services will come to your assistance.

In addition to the deep value of medical alert systems with fall detection, you should also look at your home and what you can do to make it a safer place. This would be a great time to talk with an aging in place specialist about what you can do to make the home friendlier to those with limited mobility. Engage your family caregivers in this discussion so they can offer their own suggestions and point out problems that you already have with your home’s layout. Remember that ALS is unfortunately a progressive disease that will eventually require the use of a wheelchair, hospital bed, and similar items that might not fit into the current configuration of your home. Aging in place home modifications can include wider doorways, flat thresholds, a roll-in shower, lowered desks and countertops, and much more. These changes can allow you to live in your own home more comfortably. The discussion about what to expect from ALS can also include putting a senior care plan in place that will help you transition through the years with ALS. Alert1 medical alert systems can be a part of the plan, giving peace of mind and added security.