Man describes living with 'debilitating' locked-in syndrome after catastrophic stroke at age of 16

"Life in incredibly exhausting and demoralising, everything I do requires effort. But I focus on contributing to a better future, this drives me to keep going".

Those are the words of Howard Wicks, a 29-year-old man living with locked-in syndrome (LIS).

At the age of 16, Howard suffered a catastrophic stroke. Every muscle in his body, except for his eyes, became paralysed.

His only way of communication is through a computer that tracks his eye movement.

Speaking to ITV News West Country at his home in Dartmouth, Howard describes what it is like living with the neurological disorder.

"It is a debilitating syndrome to comprehend," he said. "Being unable to move highlights countless activities you can no longer do. It’s absolutely horrendous.

"The immediate reaction people have is ‘oh my god, he can’t move at all. He can’t do this or do that.’ The trials and tribulations I have endured are unbelievable."

Howard prior to suffering a stroke at the age of 16. Credit: Howard Wicks

Howard founded the Locked-in Trust in October 2020, to help other people with similar conditions live life to its fullest potential.

In Howard's own words on the charity's website, he says LIS is a rare neurological disorder which causes complete paralysis of all voluntary muscles, except ones that control the eyes.

Individuals with LIS are conscious and awake, but have no ability to produce movements or to speak out. Communication is possible through eye movements or blinking only.

Through his charity, Howard said: "We provide grants to assist those in a locked in state with financial needs such as holidays, large pieces of equipment and housing adaptations.

"The charity’s goal is to support individuals in a locked-in state by giving them access to the resources and opportunities to live a fulfilling life."

Howard in hospital following his stroke. Credit: Howard Wicks

After his stroke in 2011, Howard's life changed drastically. He now lives alone but requires 24-hour care.

Despite the unimaginable challenges, Howard has written a book. It took around 18 months to write the 50,000 words for 'Hope: Facing the Depths of Adversity'.

He used what's called an Eyegaze computer, which tracks his eye movements.

Describing the book, Howard said: "The initial chapter introduces the reader to my life before the stroke allowing them to understand who I was.

"The book concludes with my transition from the hospital setting to community life. This book allows everyone to join me on my miraculous journey.

"I hope my book lifts the mood of people around the globe, there is always hope, no matter the circumstances."

Howard used an Eyegaze computer to write his first book. Credit: ITV West Country

"I recently signed an agreement with Tellwell to distribute my book to over 40,000 book retailers worldwide," he added.

Howard has many plans for the future, not least writing another two books - making a trilogy.

"'Hope, Love and Glory' was the original title of my book, but because the duration of my recovery is extending into a lifetime, I’ve divided the original title into three parts.

"It’s going to be a very busy future indeed," Howard said.

He has faced countless challenges, but Howard's outlook on life is to help other people. Something he says, he was born to do.

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