Information About ALS

ALS is a very unique and complex disease, and I believe it can be quantified as a collection of similar neurodegenerative conditions that need significantly more research and discovery to be able to adequately and accurately diagnose. There are various classifications of ALS based on research and information currently available and there is a growing body of evidence that there are many factors that may contribute to and ultimately be defined as the root cause of this disease. What I’m hoping to accomplish with this section of my site is to share information that I have found and ongoing research about this topic. In addition, I plan to research, list and provide information for programs and resources that others who are dealing with ALS may benefit from. At the bottom of this page you will find the latest set of blog entries for ALS related information as well as a link to the blog section where you can find the chronological list of blog articles.

Amyotrophic lateral sclerosis (ALS)

Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), known as ALS, is a nervous system disease that affects nerve cells in the brain and spinal cord, and causes loss of muscle control. 

Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise.

When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. When voluntary muscle action is progressively affected, people may lose the ability to speak, eat, move and breathe. The motor nerves affected when you have ALS are the motor neurons that provide voluntary movements and muscle control. Examples of voluntary movements are making the effort to reach for an object or step off a curb. These actions are controlled by the muscles in the arms and legs.

French neurologist Jean-Martin Charcot discovered ALS in 1869. While ALS can affect anyone, anywhere, at any time, there are two different ways cases are categorized.

• For about 90% of all cases, there’s no known family history of the disease or presence of a genetic mutation linked to ALS.
• For 5-10% of all cases, there’s a known family history of the disease. This is often called familial ALS.

In families with familial ALS, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease. For unknown reasons, military veterans are more likely to be diagnosed with the disease than the general public. A wealth of new scientific understanding about the physiology ALS has occurred in recent years.

Symptoms

Symptoms of ALS vary from person to person. Symptoms depend on which nerve cells are affected. ALS generally begins with muscle weakness that spreads and gets worse over time. Symptoms might include:

• Trouble walking or doing usual daily activities.
• Tripping and falling.
• Weakness in the legs, feet or ankles.
• Hand weakness or clumsiness.
• Slurred speech or trouble swallowing.
• Weakness associated with muscle cramps and twitching in the arms, shoulders and tongue.
• Untimely crying, laughing or yawning.
• Thinking or behavioral changes.

Stages of ALS Progression

The journey through Amyotrophic Lateral Sclerosis (ALS) unfolds through distinct stages, each representing a different phase of the disease and its impact on the individual. Understanding these stages provides insight into the progression of ALS and helps in anticipating the care and support required at each phase. There are 7 stages of ALS detailed:

1. Early Symptoms Stage: The initial encounter with ALS often comes with subtle symptoms, which may include muscle weakness, twitching, cramping, or stiffness manifesting in areas such as the arms, legs, shoulders, or tongue. These symptoms are usually mild at the outset and may go unnoticed.
2. Progressive Weakness Stage: As the disease advances, the demise of motor neurons exacerbates muscle weakness and atrophy, which gradually spreads to other regions of the body. Everyday activities like walking, speaking, swallowing, and breathing become increasingly challenging.
3. Advanced Disease Stage: At this juncture, most muscles are severely weakened, leading to significant disability. Patients require assistance with self-care routines and often lose the ability to walk or stand independently. Challenges with breathing and swallowing become common occurrences.
4. Rapid Decline Stage The trajectory of decline varies among individuals, but eventually, most people with ALS necessitate constant care. Paralysis may extend to the limbs and trunk, and difficulties in breathing and swallowing intensify.
5. Final Decline Stage This stage witnesses widespread paralysis. The functional use of arms and legs diminishes, alongside the ability to speak and swallow. Breathing becomes severely impaired, necessitating the use of ventilators and feeding tubes.
6. End-Stage ALS: Patients transition into a state of complete paralysis, with the exception of eye movements. Permanent ventilator support becomes indispensable for breathing, and total loss of communication ensues.
7. Death: The final stage culminates in death, predominantly due to respiratory failure. On average, the survival span from onset to death ranges between 3-5 years, although about 10% of individuals endure for 10 years or more.

Diagnosing ALS

Diagnosing ALS is a meticulous process as there is no definitive test for it. An accurate diagnosis is crucial for devising an appropriate management plan.

Emotional and Psychological Adjustments

The progressive loss of independence and the increasing need for assistance often lead to emotional and psychological challenges. It’s crucial for individuals and their families to have access to supportive resources to cope with these changes.

Final Stages of ALS

The final stages of ALS are characterized by complete paralysis, and most individuals will require full-time care and support. The focus during this stage shifts to providing comfort and ensuring a dignified quality of life as much as possible.

‍End-of-Life Care

• Hospice Care: Provides comfort, pain management, and support to individuals and their families.
• Respiratory Failure: The most common cause of death in ALS patients, requiring careful management and support.

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