ALS affects as many as
30,000
adults in the
United States alone
UNDERSTANDING THIS COMPLEX DISEASE
ALS Overview
ALS stands for amyotrophic lateral sclerosis, and it’s a progressive disease of the nervous system.
ALS is a progressive disease of the nervous system that specifically affects nerve cells in the brain and spinal cord called motor neurons. These motor neurons allow us to perform our everyday activities, like walking, talking, sitting, standing, and even breathing. ALS damages these nerve cells, making it difficult to perform those daily functions.
Onset of ALS
The age when ALS symptoms usually start to appear generally ranges from 40 to 75 years, but it can affect much younger people as well.
The age when ALS symptoms usually start to appear generally ranges from 40 to 75 years. However, it can also affect young adults. Most often, ALS occurs sporadically, meaning without cause or warning. Further, ALS affects everyone differently, so each person may have a different experience of the disease. If you have questions about ALS, it’s always best to talk to your doctor.
Symptoms of ALS
Symptoms of ALS usually start in one area of the body before spreading to other areas.
Symptoms of ALS usually start in one area of the body before spreading to other areas. As it progresses, it causes weakness in the muscles that were affected first and then begins to affect other parts of the body. Clinicians have difficulty predicting how ALS will progress at the time diagnosis is made. However, it is generally true that how slowly or quickly ALS progresses varies by individual. Talk to your doctor if you think you’re experiencing symptoms of ALS.
ALS Overview
ALS stands for amyotrophic lateral sclerosis, and it’s a progressive disease of the nervous system.
ALS is a progressive disease of the nervous system that specifically affects nerve cells in the brain and spinal cord called motor neurons. These motor neurons allow us to perform our everyday activities, like walking, talking, sitting, standing, and even breathing. ALS damages these nerve cells, making it difficult to perform those daily functions.
Onset of ALS
The age when ALS symptoms usually start to appear generally ranges from 40 to 75 years, but it can affect much younger people as well.
The age when ALS symptoms usually start to appear generally ranges from 40 to 75 years. However, it can also affect young adults. Most often, ALS occurs sporadically, meaning without cause or warning. Further, ALS affects everyone differently, so each person may have a different experience of the disease. If you have questions about ALS, it’s always best to talk to your doctor.
Symptoms of ALS
Symptoms of ALS usually start in one area of the body before spreading to other areas.
Symptoms of ALS usually start in one area of the body before spreading to other areas. As it progresses, it causes weakness in the muscles that were affected first and then begins to affect other parts of the body. Clinicians have difficulty predicting how ALS will progress at the time diagnosis is made. However, it is generally true that how slowly or quickly ALS progresses varies by individual. Talk to your doctor if you think you’re experiencing symptoms of ALS.
What is the ALSFRS-R?
You may have come across the term ALSFRS-R while reading about ALS. ALSFRS-R stands for Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised. This is a questionnaire-based scale that measures an individual’s functional ability to perform activities of daily living. It’s considered to be the gold standard and widely used in ALS clinical trials for measuring ALS progression.
It’s designed to measure 4 different categories:
- Respiratory, which includes measurements related to breathing
- Bulbar, which is related to things like speech and swallowing
- Gross motor, which measures things like walking
- Fine motor, which includes activities like using utensils, getting dressed, and handwriting
What do the points mean?
The scale starts at 48 points, which represents a person who is functioning normally. You lose points on the scale when you lose function based on how ALS is progressing.
The more points you have, the better you may function independently. That’s why every point matters.
Managing ALS
Because ALS is such a complex disease, it can be very difficult to manage. After all, ALS is not just a physical disease; there are also emotional and psychological effects.
Fortunately, specialized ALS clinics can provide multidisciplinary care and, together with therapies, they can form a treatment plan to help manage ALS.
MORE PLACES
TO TURN TO FOR INFORMATION AND SUPPORT
ALS researchers and advocates are continuing to fight against ALS. Meanwhile, increased education and mobilization efforts are leading to significant changes and advancements throughout the ALS community.
These independent advocacy and support organizations not only serve as an important source of information, they’re also a great way to find community support.
Of course, this list is not all-inclusive. There are many other regional/local support programs throughout the United States.
RECENTLY DIAGNOSED WITH ALS?
This doctor discussion guide can help you pinpoint questions to ask about ALS and your treatment plan.
