How AAC helped Jordi tell his ALS/MND story to the world

At 30, Jordi had a dream life. His ALS/MND diagnosis meant adjusting his expectations and learning AAC to use his creativity in new ways.

Jordi’s ALS/MND diagnosis

Jordi is a vivacious entrepreneur who is full of hope, faith and grace. At age 23, he opened a marketing business that specialized in graphic services. For the next seven years, things went well for Jordi. His business grew. He had plans to marry his long-time girlfriend. He spent his free time cooking, playing tennis and padel tennis and relaxing with loved ones by the sea.

“The simple fact of being alive, for me, already makes for a perfect day.”

The story of his ALS/MND diagnosis, which took him to dozens of doctors looking for answers, will feel familiar to many who have experience with ALS/MND.

His first ALS/MND symptoms began at age 30. While he was playing padel tennis, he noticed a feeling of stiffness in his leg. A few weeks later, he was lifting weights and realized that he had lost strength in one of his arms. From this moment on, it would take Jordi three years of visits to physical therapists, chiropractors, and neurologists to finally receive an ALS/MND diagnosis.

Eventually, as he lost strength in his limbs, he had to close his business and move in with his father for extra support.

Around the same time, his relationship ended.

The power of augmentative and alternative communication (AAC)

As he continued to lose control of his muscles, Jordi’s ALS/MND symptoms also began to affect his speech. This was especially difficult for Jordi because he loves to talk. For a while, he persisted without being able to speak clearly, until the ALS/MND unit at the hospital recommended that he get in touch with Qinera, a Tobii Dynavox partner.

Qinera distributes adaptive technology to make the world more accessible to people with disabilities. They introduced Jordi to high-tech AAC, including the hardware and some of the software he uses to communicate today. Thanks to infrared lights that track the movement of his eyes, Jordi’s speech generating device, a TD I-Series, allows him to put together sentences by looking at the words he wants to say on the screen.

Working with Acapela, Jordi personalized his communication solution by creating a digital copy of his natural voice, which allows him to sound like himself when using AAC.

“When I discovered assistive communication, my eyes lit up, and now I can’t stop talking.”

Jordi’s TD I-Series isn’t just a speech generating device. A suite of apps gives it the functionality of a phone, a computer, and environmental controls. Through an app called TD Browse, Jordi can access the internet and its many possibilities for connection. In 2017, Jordi started dating online, then met and fell in love with Lucia. They got married in 2019. To keep pace with their fastest conversations, Jordi uses TD Phone, which allows him to fire off text messages using just his eyes.

Using assistive communication for creative ALS/MND advocacy

Apart from his faith, Lucia is Jordi’s primary source of support. He is also surrounded by a network of individuals who care for him, including seven different doctors who help to ensure he is as comfortable as possible.

Shortly after his wedding, Jordi took to YouTube to earn income and raise funds to support ALS/MND research. One of his most popular and impactful videos is called: “In two minutes, I’m dead.” In the video, he explains the medical equipment that sustains vital bodily functions, like the movement of his lungs. In some of his lighter content, he interviews celebrities, using his TD I-Series to ask questions, and talks about the realities of living with ALS/MND from a humorous vantage. He has amassed hundreds of thousands of followers on various social media platforms.

“I help people who see everything dark due to having ALS/MND. I try to make them see everything at least in gray”

Many people reach out to Jordi to ask about his communication solution. As he has lived with ALS/MND for over a decade, they also want to understand what to expect as the illness progresses. He aims to spread the faith, hope and grace that has always been a part of him to others. “When you know what it’s like to sink, you bring out of yourself a spectacular motivational force,” Jordi says. “And I want to share it with everyone.”

What is ALS/MND?

ALS is short for amyotrophic lateral sclerosis. Also called motor neuron disease (MND) or Lou Gehrig’s Disease, ALS/MND causes the brain to stop communicating with the muscles, eventually resulting in complete paralysis.

Early signs of ALS/MND may include muscle twitching and weakness, trouble walking and slurred speech. Most people with ALS/MND eventually lose their voice. Some rely on assistive communication to continue to express themselves and connect with the world.

Though people tend to associate the disease with older males, ALS/MND can affect anyone at any age. While ALS/MND treatment continues to improve there is currently no cure for ALS/MND.