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.
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.
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.