Understanding The ALS Journey

ALS, or Amyotrophic Lateral Sclerosis, is one of the more frustrating medical conditions out there.

It’s something that many residents of Manchester and elsewhere know a little about – mostly that it often requires palliative care and kills a lot of people annually and no one knows quite why – but not much more than this.

The team at Above and Beyond Home Health Care tries to keep up on current research into ALS but we also have seen the current limitations: it still affects a lot of people and there’s still no cure for this nearly always deadly disease.

According to the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, about 14,000 to 15,000 people in the U.S. had this condition, as of 2016.

For those unfamiliar with ALS, it’s a progressive neurological disease that affects the nerve cells that control voluntary muscles. As these neurons decline and eventually stop working, the person is less and less able to control their movements.

Early-onset may show some twitching or numbness in a few parts of the body, but more advanced cases can include problems walking, chewing, swallowing, speaking, or even breathing.

Though some medications may be able to help some people with MLS slow down the rate of the progression of some symptoms, it ultimately is fatal in most people.

In most cases, people diagnosed with ALS live three to five years. Sometimes, 10 percent live about 10 years.

Complicating research efforts is that sometimes it takes about a year for ALS to be formally diagnosed. People may notice small tics or numb spots, but may be unsure what they mean. Or it might take a while to motivate themselves to get to a doctor. Or a primary doctor may recommend a visit to a neurologist. Or a neurologist may need to do more research to see if it’s ALS or similar conditions that affect the brain and body.

Even then, those who study ALS recommend a second opinion, especially from someone familiar with the condition, rather than a standard neurologist.

So in some cases, someone may already be far along in their symptoms before the actual disease is determined.

Risk factors

Like some dementias, medical professionals have been able to observe what happens as the brain material atrophies, leading to changes in coordination, balance, and muscle control. But the actual reasons for why this is or what triggers it, unfortunately, remains a mystery.

The medical term is “sporadic” which means that many people can have it without a clear reason, although in some rare cases, it can have a genetic link – a parent may have it and a child might. This might be due to a certain mutation that affects the structure of the brain.

Who is more susceptible to ALS also remains a bit of a mystery.

The NIH said it does tend to affect more people between the ages of 55 and 75, and more often men than women. All races seem susceptible as well.

Some research has shown that those who have served in the military have a higher chance to develop ALS than civilians, although a clear reason why hasn’t been determined. Some have speculated that environmental toxins that military personnel exposed to could be a factor, everything from garbage dumps to material used in armaments to chemicals used in warfare, such as napalm.

Stages of ALS

MDA.com which also offers information and support for muscular dystrophy and other neurological diseases presents a useful list of how ALS progresses.

• Early in the process. People may begin to notice sore muscles especially in certain areas of the body. There also be tightness, twitching, or cramping in other muscle groups and a reduction in overall muscle tone. Weaker legs can lead to occasional challenges walking such as stumbling more. Changes in speech patterns may also begin to be noticeable.
• The middle stages include more noticeable muscle problems and a lack of support (if someone falls, they may not be able to get up again without help.) Joints may become painful and there are now problems eating, swallowing, and chewing, which often requires people to change their diet to something softer.
• Later stages. Many muscles begin to lock up and are paralyzed. Breathing becomes difficult as the muscles in the lungs don’t work as well. This can lead to less oxygen entering the body and problems related to this such as pain, fatigue, headaches, and shortness of breath. People also have a high risk of pneumonia as well.

Most people who have ALS die of respiratory failure when their bodies can consume enough oxygen to sustain them. Death also can take the form of malnutrition due to problems swallowing. They also may choke if food goes into the lungs accidentally.

Hospice care may be a recommended option for people in the final stages of ALS. They can receive observation, pain management, and support.

Those dealing with ALS and their families are also encouraged to take part in various research projects that can help provide data for future people with this condition.