One aspect of my life that I would say I take the most for granted is my ability to simply communicate with the people around me. This is something I cannot imagine losing, and I truly feel for those who have lost this ability. Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, affects the nerve cells that control voluntary muscle movement. Once someone is diagnosed with ALS, they will start to lose control over their movement overtime, and eventually their brain will be unable to control any voluntary movements. There are around 5,000 cases of ALS diagnosed in the United States each year, and it is estimated that the disease is responsible for 5 out of every 100,000 deaths in people above the age of 20. This life shattering disease has taken the ability to communicate from so many people across the United States, and at the moment there is no cure for ALS.
While science and medicine is being implemented to search for a cure, technology may also have a future in helping patients with ALS! In 2020, Dr. Ujwal Chaudhary began a two year clinical study on a 34 year old patient with a fast progressing form of ALS. This patient is what doctors refer to as “locked in,” which means they have lost total control over their movement, and are unable to move any part of their body, even their eyes. Many ALS patients who lose control over their limbs will use eye movement to communicate, looking at one thing to indicate yes or another to indicate no. Families that rely only on eye movement to communicate with their loved ones have become very creative in ways to form sentences and full thoughts. Before the man participating in the clinical study lost control over his eye movements, his family would group letters into five different colored groups, they would ask him if the letter he wanted to use was in each of the groups and he would respond using his eyes until they were able to understand what he wanted to say. However, soon the disease took even this ability from him. But before he became totally locked in, he consented to his family to participate in a clinical study with Dr. Chaudhary.
In this clinical study, tiny microelectrode arrays were inserted into the surface of the motor cortex, the part of the brain responsible for executing voluntary movements. This is not a science class, so I won’t dive too deep into how the science behind the technology works, which I don’t fully understand myself, but essentially these microelectrode arrays are small chips that can understand what the patient wants to look at, not through eye movement itself, but when he imagines his eyes moving. Although his brain does not allow him to make eye movement itself, this technology can detect how he would move his eyes if he could, and allows him to make choices between letters like he did when he did have the ability to move his eyes.
This aspect especially blew me away. The idea that science and technology has come so far to understand what someone wants to do, even when they can not actually do it, through their brain activity alone was super interesting. It was hopeful to read about the success that this patient experienced in this clinical trial, and I’m sure was super inspiring for families of patients with ALS when the journal detailing the clinical study was released on March 22nd of this year.
Because I know many of you will be curious, some of the first things he asked when he was finally able to communicate had to do with his care, asking for an adjustment of the positioning of his head, among other things. He requested certain foods, like goulash and sweet pea soup, to be fed through his feeding tubes. Naturally, he also asked for a beer. This was also the first time in a long time that he was able to speak to his family, and to his four year old son he was able to communicate “I love my cool son.” While he isn’t able to speak these words to his family, he is finally given the opportunity to communicate with them once again. This is the first study to give the ability to communicate to a patient that is completely locked in.
However, this process is not perfect. The process of choosing letters through the microelectrode arrays on the brain is painfully slow. He can now communicate at a rate of about one character per minute, which means that just to communicate “I love my cool son,” it would take about 14 minutes. Additionally, this was not an immediate success. After having the microelectrode arrays put in in 2020, it took him 3 months to be able to use his brain power to respond “yes” or “no” when presented with different letters. Even after that, it took him an additional three weeks to produce his first few sentences. Additionally, this technology is incredibly expensive, and scientists are seeking funds to provide similar implants to patients with ALS, as treatment will cost almost $500,000 over the first two years of use.
Although slow and expensive, this technology could very well be the future for patients with ALS. It allows them a chance to communicate with their families, something that ALS has taken away from so many. Although it is not a cure, this technology is providing hope for families all over the world. Seeing how far science and technology has come is truly inspiring, and makes me wonder what we will see come from the tech world in the near future.
Sources:
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet https://www.independent.co.uk/tech/paralysed-man-brain-implant-beer-b2044610.html