PAPER TRAILS: In memoir, ALS champ open book

On the cover of his new book, he's Kipling A. Jackson.

But to me and others at the Democrat-Gazette -- and Arkansas Children's Hospital and Windstream where he'd later work before retiring in 2013 -- he's Kip, the able and amiable IT guy who was forever fixing our computer fails.

His electronic wizardry is now a lifeline for Kip, 46, of Sherwood, who cannot move or speak and communicates solely through an eye-tracking computer.

In 2012, Kip was diagnosed with ALS, also known as Lou Gehrig's disease. His book, ALS: A Respiratory Perspective, shares his personal journey.

His wife Robin says that at first, the disease progressed quickly: "He went from diagnosis to in a wheelchair full-time, on a ventilator within a year and a half."

The National Institute of Neurological Disorders and Stroke defines ALS as a "group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement," adding there is no known cure and no effective treatment to reverse or slow progression.

"Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear."

Kip is not only still alive, Robin says, "He loves life."

And that's a main theme of his book.

"He wants people to know just because you're diagnosed with a terminal illness doesn't mean it has to be a death sentence, that you can still live and enjoy life," Robin says. "He wants to offer hope."

As for Kip's physical condition, Robin says, "He cannot move any part of his body at all; he's completely quadriplegic. He can move his mouth a little. And he can move his eyes.

"He has a feeding tube. He ... has a ventilator because he can't breathe on his own. ... He hasn't been able to speak since he was trached, and that's been four years now."

Not that any of that stops him. Via Kip's computer, Robin says, "He is so busy, he needs a secretary." It's how he produced the book. By himself.

"He did every single bit of it with his eyes, from all the text, he designed the cover and he found an editor ... and he published it all on his own," Robin says. "He doesn't let me help with any of it. He's done everything on his own, all with his eyes.

"It really is amazing."

A book release party will take place from 5-8 p.m. Saturday at LaVada's event venue, 2005 Main St., North Little Rock, where people can meet Kip and buy his book ($10). Tickets for the casual event, which will include hors d'oeuvres, drinks and a silent auction, are $25 each.

Proceeds from the party will support Kip's home care expenses and the Arkansas chapter of the ALS Association. To order tickets, call (501) 744-3530.

Books also can be purchased through Amazon.

Email: jchristman@arkansasonline.com

SundayMonday on 04/22/2018

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