Refusing to Let ALS Touch Souls

Amyotrophic Lateral Sclerosis (ALS) is a progressive, neurodegenerative disease that intrudes into people's lives from ages around 40-70 years old. 

The literal definition of ALS can be broken down like this: 

    Amyotrophic - "a": without, "myo": muscle, "trophic": nourishment

    Lateral - to the side of

    Sclerosis - abnormal hardening of body tissue 

This disease, also known as, Lou Gehrig’s disease, damages motor function neurons of voluntary muscle control. Voluntary muscle controls consist of speaking, eating, and even body movements. It affects both upper and lower motor neurons. The upper motor neurons carry messages from the motor cortex to the cranial nerves while the lower motor neurons carry messages from the motor cortex to the skeletal muscles. This inevitably fatal illness has 2 main types: sporadic and familiar. Sporadic is most common while familiar is genetic. 

https://www.youtube.com/watch?v=kOnk9Hh20eg

This debilitating condition does not have a cure. Different medications can help subside some symptoms. Most people who have ALS rely on their caregivers and are unable to do their ADLs alone. However, thanks to new equipment and technology like the Tobii Dynavox I-15 and the PCEye Mini, people who suffer from ALS can finally get to feel some sense of normalcy. 

Tobii Dynavox I-15
https://www.tobiidynavox.com/devices/eye-gaze-devices/i-15-with-communicator/

The Tobii Dynavox I-15 is an assistive device designed for those with communication difficulties. It uses a program called “Wake on Gaze”. This program is activated by just looking at it! With its revolutionary eye-tracking technology, patients are able to do everyday things using this software. 

One person who has attempted and conquered this technology was Kip Jackson. Kip was diagnosed with ALS in 2011. His life significantly improved after acquiring this communication device. He told FOX News about his amazing triumph, ordering groceries for his wife! This was a huge success for those who suffer from ALS and it is so great that Kip was able to feel that type of accomplishment again. Even with Kip's obstacles like having a feeding tube, becoming quadriplegic, and becoming ventilator-dependent, he took this amazing technology one step further by producing his own music and even writing a book! 

However, sadly after battling a fatal disease for nearly a decade, Kip's inspirational fight with ALS ended on March 23, 2020, at age 48. 

“ALS has taken away my ability to move and breathe but it cannot – I refuse to let it – touch my soul." - Kip Jackson

Kip and his wife, Robin

To read the Fox News article about Kip: https://www.foxnews.com/health/device-gives-man-with-als-ability-to-write-novel-produce-music

To read Kip's blog: https://bluepellucidity.wordpress.com/

To buy Kip Jackson's book, click here.

To donate to your local ALS association, visit http://www.alsa.org/community/chapters/

For more information on the communication device, visit https://www.tobiidynavox.com/

References

Hein, A. (2016, June 17). Device gives man with ALS ability to write novel, produce music. Fox News. https://www.foxnews.com/health/device-gives-man-with-als-ability-to-write-novel-produce-music.

Lancaster, S., (2021, August). OT537: Neurological Aspects of Occupational Performance, Lecture ALS [Powerpoint Slide]. Retrieved from https://blackboard.uthsc.edu/ultra/courses/_18020_1/cl/outline.

Mooney, P., & Begin, B. (2018, March 11). About Me. The Blue Pellucidity and www.kiplingajackson.com. https://bluepellucidity.wordpress.com/about/.

What is ALS? The ALS Association. (n.d.). https://www.als.org/understanding-als/what-is-als.