Coeur d'Alene man becomes advocate for ALS awareness

By Keith Cousins'alene Press, Associated Press | Posted - Sep. 5, 2015 at 7:51 a.m.



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COEUR D'ALENE, Idaho (AP) — Matt Wild refuses to be weighed down by the giant placed on his shoulders when he was diagnosed with Lou Gehrig's disease last year.

Instead, the 42-year-old Coeur d'Alene native has embraced the catchphrase, "Uncrushable Spirit," he created while writing one of many emails to friends and family explaining just what it means to be living with amyotrophic lateral sclerosis — a neurodegenerative disease commonly associated with the New York Yankee's slugger who publicly battled the condition in the late 1930s and early 40s. Wild said he wanted his family and friends to know he was going to be the same person, regardless of how the disease takes its toll on his body.

"It's also one of those things I use to pep myself up," he added. "It's me telling myself this is how I am going to face this and define myself."

This year Wild has applied that same uncrushable spirit to building a non-profit organization that will fill a need in the ALS community. In cooperation with Wild's friends and family, Matt's Place Foundation aims to build a state-of-the-art home in the Inland Northwest that will provide PALS (People with ALS) and their families a place to live with a semblance of independence and normalcy.

"We're trying to build a community where no one goes without what they need," Wild said.

CONFIRMED SUSPICIONS

Wild said he knew something was wrong when his hands began twitching and shaking uncontrollably. He mentioned the issue to his doctor during an annual physical and was told to keep a close eye on it.

In the months that followed the appointment, Wild said he made a concentrated effort to get in better shape with a strict diet and intense workout regime. The Marine Corps veteran was feeling better, but the increasing frequency of twitching in his hands and other muscles were a constant reminder that something was still off.

"I started doing the same thing everyone does now and went to WebMD," Wild said. "I put in my symptoms and there was only one thing that came up."

Wild's fiance and workout partner, Theresa Duffield, noticed the changes and encouraged WIld to go back to the doctor. He didn't go to the doctor immediately, but promised Duffield he would after the couple returned from an upcoming vacation.

"And this is a man who is very much into his yearly physical and has no problem going to a doctor," Duffield said.

"I was basically a little afraid to face the facts," Wild added.

After the vacation, Wild said he began instantly getting "day-after" soreness right in the middle of his workouts. On top of the muscle soreness, he was quickly losing the use of his hands.

"I just panicked and it prompted me to go see someone," Wild said.

Within weeks Wild received an official diagnosis. One of his doctors said he has never told anyone they have ALS that didn't already know, and the phrase rang true for Wild.

"But that first time, when my family doctor said it, I got a little emotional because that's the first time a medical professional had confirmed my suspicions," Wild said.

Duffield and Wild spent the days following the diagnosis intentionally avoiding all technology. The couple, Duffield said, wanted to let the gravity of it all sink in before beginning to look things up.

"After that it was all about taking action," Duffield said.

A UNIQUE VOICE

Throughout the year, Wild and Duffield dove into educating themselves about the disease and the ALS community in the Inland Northwest. Things that were difficult at the beginning of the journey have been overcome through adaptation.

"I've kind of handled it by researching what I am going through right now," Wild said. "I take a glimpse at what will be going on in the future, but why focus on all the things down the road when you can focus on what's directly in front of you?"

Duffield said her research on and exposure to the ALS community has made her realize that there are two types of ways to react to being diagnosed with an incurable disease. Some, she said, fall into a deep depression and prefer isolationism.

"There's other people, though, that become advocates," Duffield said. "They find a voice and every one of them finds a unique voice."

Wild chose the latter, and found his unique voice when talking to his fiancée about his fear of having friends and family come visit him in a treatment center sometime after ALS takes his movement and ability to speak without technological assistance. With his status as a veteran, Wild said he hasn't had to bear the average annual medical costs of $300,000 to treat his ALS, which leaves his family the option of purchasing a home to accommodate his needs in the future.

"Most of the families go bankrupt, many of them divorce — it's an exorbitant amount of money on top of the stress from caregiving," Duffield said. "Because of the money issue, they are stuck in their beds all day and all night with very little in terms of communication. But these people still have voices."

That realization, and the goal of keeping families together, was the spark needed to launch Matt's Place Foundation. They told their circle that's what they wanted to do, and everyone jumped on board.

"I have been blessed to have a loving and supportive group around me including my family, Theresa and great friends," Wild said. "I am thankful for everyone that has helped the foundation with their hard work, time and passion."

The foundation will soon have its nonprofit status and begin heavily fundraising in the area. Wild said the first goal is to build one home in the region that is integrated with technology, allowing PALS who have lost use of their hands to open doors and change the thermostat.

"Just so the person has the feeling of some independence and being able to make decisions on their own without help," Wild said.

There's a large population of PALS in the Inland Northwest, causing Wild to think that one home won't be enough. However, with one home up and running Wild feels that his foundation and other individuals will be able to duplicate the process with other homes.

"Hopefully years down the road there are Matt's Places all over the country," Wild said. "Hopefully they're being used by one family until they're not needed and then you can get another family in there."

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Information from: Coeur d'Alene Press, http://www.cdapress.com

Copyright © The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Keith Cousins'alene Press

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