Living with ALS: What We’ve Learned

Yesterday, our interview with ALS blogger and three-star member Rachael gave you a glimpse into what it’s like to live with ALS (Lou Gehrig’s disease).  Today we take a closer look using the data and experiences shared by our 4,844 ALS members, who comprise the world’s largest online ALS population. ALS, which stands for amyotrophic lateral sclerosis, is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Some of the most debilitating symptoms include progressive weakness, atrophy, fasciculations (muscle twitches), dysphagia (swallowing difficulty), and eventual paralysis of all respiratory function.  Other commonly reported symptoms are shown in the chart above. Given the severity of ALS symptoms, the life expectancy of an ALS patient averages two to five years from diagnosis, according the ALS Association (ALSA).  However, ALSA states, “The disease is variable, and many people live with quality for five years and more.”  Rachael, who is six years post-diagnosis and living a busy, active life thanks to assistive technology, is a perfect example. What does assistive technology entail?  For many ALS patients like Rachael, this involves the use of medical equipment to aid basic functions such as: Walking …

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