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Posted on July 18, 2022

Meet Dylan

Dylan lives in an adult care home in Vancouver, WA.

In 2018 he was diagnosed with ALS, which affects muscle control and communication.

Dylan has two honorary doctorate degrees in naturopathic and Chinese medicine from the National University of Naturopathic Medicine (NUNM). He enjoys poetry and caring for the environment.

An image of Dylan with his family at his graduation. Left to right: his brother, his Mum, his Dad.

Find out more about Dylan…

Dylan was introduced to the idea of AAC in 2018. He has answered some questions about his AAC journey.

An ALS diagnosis

ALS, sometimes known as Motor Neuron Disease (MND), is a progressive disease that affects the nervous system and causes gradual loss of muscle control throughout the body. This is due to the brain no longer being able to communicate with the muscles.

Dylan’s first symptoms appeared in the spring of 2017, he was in his early 30s, living in Portland, OR, and pursuing dual degrees. He shares, “Initially it was shoulder stiffness, then gradually my right hand weakened until I couldn’t use my dominant hand for anything. I was in limbo for months, both alive and dead, a real-life Schrodinger’s cat.”

He worked to continue his classes at NUNM but had to withdraw in his second to last semester due to his condition. Communication was becoming difficult and affecting his day-to-day life.

A selfie of Dylan in black and white.
A selfie of Dylan

How does Dylan communicate?

Dylan’s speech-language pathologist (SLP) introduced the idea of an AAC device. Together they trialed different options for months but ultimately decided on Grid 3 software with an eye gaze camera.

What was Dylan looking for in an AAC device?

A Grid Pad 12 with Alea eye gaze camera. The following features have been annotated: environment control, email, type messages for face-t-face communication, Alea eye gaze camera, social media, access to the internet, online music streaming platforms, writing software for publishing.
The features important to Dylan

As his body was losing mobility it became essential for Dylan’s independence to consider alternative access methods such as an eye gaze camera to control his environment and keep in touch with friends near and far.

“I think the biggest challenge for me has been communication. I can’t speak like I used to anymore. Thankfully I was able to get an eye tracking device with communication software.”

Dylan’s freedom to access education

With Grid 3 software, Dylan was able to continue his studies part-time and was awarded honorary doctorate degrees in both naturopathic and Chinese medicine. In June of 2019, he gave a speech using Grid and walked with his classmates at graduation.

Leading a fulfilling life

Despite a very different life post-diagnosis, Dylan has found new ways to live a fulfilling life.

“I was planning on starting my own clinical practice, I was going to teach aikido and I wanted to start a family. Letting go of those dreams was hard but I can still be of service by spreading awareness of ALS, writing for my website, or trying to uplift my caregiver after she had trouble with another resident at my adult family home.”

Today, Dylan maintains a blog, and has a passion for poetry and environmental awareness, specifically fighting climate change through reforestation efforts in the Pacific Northwest.

He leaves us with these words:

“It is much easier to focus on harmonizing with the rhythms of the universe when it is a sunny day in the park; but it takes a muddy swamp to grow a lotus flower, immense pressure to make a diamond, and rain to get a rainbow.”

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