18 posts from December, 2011

Living with ALS: What We’ve Learned

Posted December 20th, 2011 by

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.

Living with ALS: Some of the Most Commonly Reported ALS Symptoms (and Their Reported Severity) at PatientsLikeMe

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:

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.

Some of the Side Effects Our Patients Report for the ALS Drug Rilutek

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.


Spotlighted Blogger: ALS Patient Rachael of “Notes to Self”

Posted December 19th, 2011 by

ALS Blogger Rachel of "Notes to Self"

Welcome to the third installment of our new blog series featuring patient bloggers. Last week, we introduced you to Parkinson’s blogger Steve, and today, we’d like you to meet Rachael, a three-star member who has been a part of PatientsLikeMe’s flagship ALS community since the very beginning. In fact, she joined PatientsLikeMe in May 2006, just two months after being diagnosed with this progressive neurological disorder (also known as Lou Gehrig’s disease). Her blog is called “Notes to Self,” and it’s a candid and charming journal of the full life she leads, despite her condition.

1.  What role does your blog play in your life?

As the title suggests, my blog is [filled with] “Notes to Self.” I use it as an aide memoir and an excuse to be verbose as my voice fails me. It is useful to direct people who ask about events in my life when repetition of the story would be tiring. I also find that it helps me to work through my often complicated emotions in dealing with the disease and its incumbent challenges.

2.  Tell us about using an eye gaze system to write your blog posts and more.

As I have blogged on many occasions, the Eye Gaze System [a communication system directed by eye movements] is invaluable to me. I was fortunate enough to get the system before my voice and keyboard dexterity gave up entirely. I have become used to using it, and the transition has been less traumatic than it otherwise might have been. Low-tech communication is all very well in an emergency but cannot compensate for speech.

The Eye Gaze allows me to converse on an almost level footing, conveying thoughts and observations, expressing myself in my own style with all its complexities and idiosyncrasies. The Eye Gaze also allows me to indulge my “inner geek” and access the Internet and Skype to communicate with far flung friends and family.

3.  You’re a big user of the InstantMe tool at PatientsLikeMe.  Why?

I have always been quite an obsessive character. I am possibly overworking the PatientsLikeMe facility. I find it of immeasurable help to have a diarized record of my progression as it relates to my daily life. I tend to ramble, so I find the strict regimen of 140 characters helpful.

A Snapshot of the InstantMe Survey Rachael Takes Daily at PatientsLikeMe (Click Through to See Her Latest Entries)

A while back, I worried about my memory loss. I had a test done, and it showed no signs of the frontal lobe dementia that terrified me. My consultant reassured me that my short term memory loss was within “normal” parameters. To me it was still unacceptable. Because I have so many small things to remember that people without this condition would find insignificant, something has to give. Having a log helps my recollection. It is also useful for caregivers to reference and saves me effort and energy that I often do not have. It makes my clinical review a whole lot easier and accurate.

4.  In your last post, you talk about reconnecting with friends you’d pulled away from.  Tell us about that.

When I was first diagnosed, I was given the usual prognosis “18 months to live”. Some friends ran away but I realize now that I also withdrew from many people in my struggle to come to terms with the disease. 18 months has come and gone a number of times. Over time I had to re-evaluate my response. Instead of planning for dying I needed to plan for living. Part of this included giving people the opportunity to be involved in my life.

It is, on reflection, a patronizing thing to withdraw friendship without at least offering the choice. Life with ALS is difficult, but the challenges are not insurmountable. I thoroughly enjoy my life and my friends both old and new. Anyone reading my “InstantMe” [history] will know that I have an active social life and a busy home.