Neuro Note 2: Alex's ALS Journey

For this Neuro Note I watched a YouTube video called “Alex’s ALS Journey.” This is a 15 minute video compiled of home videos taken mostly by Alex’s wife from when Alex was first diagnosed to when he passed away. It specifically stood out to me because it showed Alex doing activities of daily living (ADLs). I appreciated the insight into how hard a task, that many of us take for granted such as brushing our teeth, became for Alex. While the video had sweet & light hearted clips, it also showed the reality & struggles that come along with an ALS diagnosis. The video showed Alex’s wife caring for him every step of the way from dressing, to showering, to feeding him as the disease progressed.

Alex began to blog to encourage other’s with ALS. However, soon after his fingers began to hurt too much to type and he lost the use of them. He began to type with his nose using an iPad in stead. When he was no longer able to use his nose, he used a device that tracked his eyes and blinking.

I was touched by how Alex never lost his sense of humor. For example, one video was of him saying “I need a volunteer to come hang our Christmas lights up… for some reason my wife won’t let me get up on the roof any more.” Another clip showed Alex playing Hungry Hungry Hippos with his feet while his 3 sons played on the ground.

In addition, Alex went to great lengths to inspire others even as his challenges were increasing. He preached with his talking device and he co-founded Unbroken International, an organization that works to set up drop in centers for street children to find safety, family centers that provide counseling, and small adoptive homes for abandoned children. I have provided the link to Unbroken International INC’s LinkedIn profile below.

Many people have heard of ALS through the ALS “ice bucket challenge.” In fact, this video includes Alex doing the ice bucket challenge! The ALS Ice Bucket Challenge raised $115 million in the summer of 2014. While this is great progress for the ALS Association and research projects, many people are still not familiar with what ALS actually entails. I learned that initial symptoms of ALS often include trouble grasping and it is usually a gradual onset. I also learned that the progression of ALS varies between people, but the mean amount of survival time from diagnosis is 3-5 years.  

Here are some links where you can learn more about Alex and ALS:

Alex’s ALS Journey video: https://www.youtube.com/watch?v=iF8D5KVWKIM

Unbroken International INC LinkedIn profile: https://www.linkedin.com/in/unbroken-international-inc-5730403b/
ALS Association: http://www.alsa.org/about-als/symptoms.html