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 (a power wheelchair)
- Breathing (a non-invasive ventilator or “bi-pap” machine)
- Eating (a feeding tube)
- Going to the bathroom (a catheter)
- Communication (an eye gaze system).
How well do these interventions work? Click on each treatment name above to read evaluations from hundreds of patients about the effectiveness, side effects, cost and more. In addition to these various types of equipment, one of the most commonly reported treatments for ALS is Rilutek, the first prescription drug to be approved specifically for ALS. While it does not cure ALS or improve symptoms, it may extend survival or the time to tracheostomy (the creation of an artificial airway in the throat), which occurs when a patient is no longer able to breathe on his or her own. Currently, we have 1,124 patients taking Rilutek, with 293 treatment evaluations submitted.
What do patients say about this drug? We leave you with a sampling of comments that patients have shared on their treatment evaluations.
- “One day I was having tremors in my left arm. I took the Riluzole [generic name for Rilutek] and one hour later the tremors stopped. I know it is helping.”
- “I made a decision that 10% increased lifespan from onset was not worth being very sleepy all the time. I would rather require far less sleep each day than live slightly longer.”
- “It is a slight pain because you’re not supposed to eat for two hours before or an hour after, and I’m trying to keep weight on.”
- “I think this extended my time by at least six months. I started taking it about two months after my diagnosis. I’ve been told it’s more effective when you start taking it early like I did.”
- “Quit taking due to elevated enzymes in my liver. Drug caused increased hunger, protein cravings, and very sluggish feeling.”
- “Currently purchasing under Medicare as a tier 4 drug. When in the doughnut hole, the cost is approximately $985 per month.”
- “We can never know if Rilutek does any of us any good. If it doesn’t seem to be doing any harm, I believe it is better to take it than not to.”
This is just a sample of the wealth of experience and data to be found at PatientsLikeMe. Dive in today to learn more about ALS.
