Amyotrophic lateral sclerosis (ALS) is a neurodegenerative condition that progressively affects the nerve cells in a person’s brain and spinal cord; it is also sometimes referred to as Lou Gehrig’s disease. With a relatively quick progression that generally only gives patients 3–5 years to live after diagnosis, ALS has a devastating emotional impact on those diagnosed as well as their family, friends, and caregivers. As ALS Awareness Month, May is a special time of the year to shine a light on this disease and encourage education, advocacy, and support for those affected.
In this blog, we’re exploring the seven stages of ALS to help our readers understand how the disease typically progresses and what can be expected along the way.
Key Takeaways
- May is ALS Awareness Month and a time to educate the public and support those affected.
- ALS progresses in seven distinct stages from early symptoms and diagnosis to the need for palliative care.
- Understanding the stages of ALS can help patients and caregivers prepare and seek the appropriate care.
- RMC specialists can help people navigate neurological diagnoses with compassion and expertise.
What ALS Is and Why It Matters
ALS occurs when motor neurons, the nerve cells responsible for voluntary movement, begin to die. When the brain’s motor neurons die, it can lead to various symptoms, but for ALS in particular, it causes muscle weakness, loss of coordination, and eventually full-body paralysis. Unfortunately, there’s no cure at this time; however, early intervention and supportive care can improve a patient’s quality of life.
ALS Awareness Month is essential in spreading information about the early symptoms, treatment options, and the emotional toll this disease can take. It also helps drive research funding and foster community support.
Understanding how ALS progresses is a critical part of preparing for how it will affect a patient and their loved ones emotionally, physically, and medically.
Stage 1: Early Symptoms and Mild Weakness
In the earliest stage, ALS often presents itself as something deceptively small. This could be feeling weakness in one hand, slight tripping when you walk, or occasional muscle cramps. Because they’re not necessarily reserved for the elderly or sick, these symptoms can be easily dismissed. Early ALS symptoms can happen to anyone occasionally, which is why diagnosis can be delayed. However, catching ALS at this stage can help patients and families begin planning, exploring therapies, and accessing support systems early on.
Stage 2: Muscle Imbalance and Worsening Symptoms
As ALS progresses into the second stage, symptoms become more noticeable. As the muscles atrophy and experience an increasing loss of stimulation from nerve cells, muscle weakness and stiffness become more widespread throughout the patient’s body and begin to affect both sides of the body. Simple tasks you used to be able to do with ease, such as buttoning your shirt, opening a door with a key, or going up the stairs, may all of a sudden become difficult to do.
Although it may seem early, physical therapy, assistive devices, and occupational therapy often become a part of daily life. But by incorporating these changes early on, most patients can maintain independence for longer.
Stage 3: Loss of Motor Control
By the third stage, many patients begin to experience extensive muscle weakness and a loss of fine motor control, such as being unable to grasp or hold objects. Additionally, walking without a cane, walker, or other assistive device may no longer be possible. Breathing becomes increasingly labored during any physical activity, and fatigue causes a decrease in energy levels.
Communication assistance may also become necessary at this stage, as slurred speech and slowed pronunciation set in.
Step 4: Severe Weakness and Limited Mobility
At the fourth stage, most muscles are significantly weakened, and patients may require a wheelchair full-time as well as help with daily activities. Bulbar symptoms also begin to worsen with increased difficulty swallowing as muscles in the mouth and throat deteriorate.
At this point, nutritional support, speech therapy, and respiratory assessments become critical care components for the patient.
Step 5: Complete Dependency and Respiratory Concerns
Stage five is marked by complete dependency on caregivers for daily living activities like dressing, bathing, and eating because they can’t use their arms and hands anymore. Around this time, a feeding tube may become necessary to ensure the patient receives enough food and nutrients.
Breathing issues also become more pronounced, and many patients begin using non-invasive ventilation devices, such as BiPAP, to help them breathe. The patient’s decline in respiratory function can also lead to secondary symptoms, including headaches, worsening fatigue, brain fog, and increased susceptibility to pneumonia.
At this time, emotional support and compassionate caregiving are vital for the emotional and mental well-being of the patient and their loved ones.
Step 6: Loss of Voluntary Movement
At the sixth stage, voluntary muscle movement is almost entirely gone. Assistive technology, such as eye-tracking devices or speech-generating apps, is especially helpful for communication at this stage. Although patients may not be able to move, they can still be mentally alert and aware and want to interact with family, friends, and caregivers.
Hospice care or specialized neurological care is typically introduced around this time to ensure the patient remains as comfortable as possible and maintains a dignified presence.
Stage 7: End-Stage ALS
In its final stage, ALS affects the muscles responsible for breathing. At this stage, patients can choose to use mechanical ventilation or may transition to palliative care. What can be most difficult is that while the patient’s body continues to deteriorate, it’s not uncommon for their mind to remain intact. This underscores the emotional weight of the disease and the importance of social support and activities with family members to decrease levels of depression.
Each ALS journey is unique, and while this stage is the most physically limiting, it’s also when the human spirit and resilience can shine the brightest.
How RMC Supports Patients During ALS Awareness Month and Beyond
If you or someone you love has recently received an ALS diagnosis, you are not alone. At RMC, our compassionate neurologists and support staff are here to help you (and your family) navigate the journey ahead with courage and endurance. From diagnosis through every stage of progression, we’re committed to personalized care, advanced treatment options, and emotional support.
Let RMC be your trusted partner in care this ALS Awareness Month. Contact us today for a consultation or to learn more about the resources available to you.