Ragnar’s story

Keep them laughing:
Ragnar’s ALS/MND story

Meet Ragnar

Ragnar is a TV producer with a love for music, writing and humor. On a typical day, he enjoys spending time with friends, watching movies or soccer, listening to music, and relaxing in the sun with coffee or whisky. While amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) has restricted his speech and mobility, Ragar relies on his TD I-Series communication device to stay connected to much of what is most important to him. Equipped with an eye tracker, the device enables him to write plays, compose lyrics, and most importantly, joke with his friends and wife, Helene.

“Humour is my religion, the one thing I believe in and that keeps me alive”

— Ragnar Eklund

A TV producer’s ALS/MND story

Ragnar says he used to work too much. Before his ALS/MND diagnosis, he helped to create popular Swedish shows such as Stockholm Live, The Athlete’s Gala and The Angry Carpenter as a director and producer.

In 2017, Ragnar was running to catch the bus when he suddenly lost control of his right foot. Later that same year, he was told he had ALS/MND, and would eventually lose the ability to speak and move.

To stay ahead of losing his voice, Ragnar consulted with a Speech and Language Pathologist at the hospital who specialized in ALS/MND. When it became clear to her how much Ragnar valued his sense of humour, she encouraged him to try message banking, which allows people to preserve unique slices of their personality. Ragnar recorded hundreds of sayings and jokes in his own voice, so that he could later use them with a communication aid.

When it came time to learn how to use a device, an assistive technology service provider sent a technician to Ragnar’s home to help him and Helene with the initial setup. He still visits Ragnar to support him to this day.

By 2020, Ragnar had started to use a power chair to move around, and in 2022, he lost his voice. During that span of time, a Swedish television network began filming a documentary about his experience with ALS/MND that showcases how assistive communication has helped him continue to brandish his signature wit. Watch the full documentary on TV4 Play: Humor till sista andetaget. Translated title: “Humor to the last breath.” (A subscription is required to watch, but it is free to register.)

Maintaining a sense of humour with Lou Gehrig’s Disease

While Ragnar has preserved many of his favorite bits of humour, it’s important to him to be able craft fresh and spontaneous jokes. In addition to pre-recorded phrases, Ragnar uses Communicator 5 to type whatever he wants to say with his eyes. The software then produces the words in a synthetic voice through the speakers of his TD I-Series.

Ragnar also uses Communicator 5 with Accessible Apps for eye gaze access to Netflix, Spotify, Messenger and Facebook. This allows him to stay connected to friends on social media, watch soccer and movies, and listen to music—including his own. Ragnar has released two albums under the name ALS-Ragge.

When he wants to phone a friend, Ragnar uses TD Phone, which allows him to place calls and send texts from his device.

Ragnar’s TD I-Series has also become his writing desk. Using Communicator 5, he has been composing texts to support a Swedish ALS/MND research foundation.

Grateful to have learned assistive communication early, Ragnar has been able to maintain his energy, share his wit and continue his creative pursuits through the difficulties of living with ALS/MND.

A man with ALS/MND using a speech device to talk to his wife

What is ALS/MND?

ALS for amyotrophic lateral sclerosis. Also called motor neuron disease or Lou Gehrig’s Disease, ALS/MND causes the brain to stop communicating with the muscles, eventually resulting in complete paralysis, apart from the muscles of the eye, which ALS/MND leaves untouched. 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.