Matt's Place to open second ALS home

POST FALLS — Every year, 5,600 Americans are diagnosed with amyotrophic lateral sclerosis, also known as Lou Gherig’s disease or ALS. Most families don’t realize the toll battling the disease will take.

Theresa Whitlock-Wild, co-founder of Matt’s Place Foundation, an ALS support organization, compares it to a catastrophic car wreck.

“I chose this picture. I realize it’s a little bit graphic and it’s shocking,” Whitlock-Wild said while pointing to a multi-vehicle freeway pileup. “But the reality is that with an ALS diagnosis, there’s a lot of people that have to come in and help.”

ALS patients require a vast team of caregivers, including social counselors, home practitioners, neurologists, psychologists, a palliative care team, physiotherapists, speech-language therapists, respiratory practitioners, occupational therapists and rehabilitation medicine physicians.

Navigating the disease doesn’t come cheap, and many aspects of care aren’t covered by insurance. There are costs involved that most don’t realize until a diagnosis is upon them.

Speaking to the Post Falls Chamber of Commerce on Wednesday morning, Whitlock-Wild talked about husband Matthew’s 2015 diagnosis and the organization they founded together that year.

ALS affects nerve cells called motor neurons that control voluntary muscle movements like walking and talking. A diagnosis will eventually lead to the loss of ability to speak, eat, walk and breathe.

Life expectancy for ALS patients is about two to five years.

“What happens is the neurons in the brain and spinal column that are sending out signals to the muscles to repair and bring in nutrients, that neuron begins to wither and die,” Whitlock-Wild said. “It is a progressive disease and what that means is that it will continually get worse. It doesn’t stop.”

The rate of progression is different for every patient, but it’s always rapid, Whitlock-Wild said.

To simply maintain the semblance of a quality life, ALS patient needs include power wheelchairs, wheelchair accessible transportation, ADA-compliant ramps to access the home, often extensive home remodeling to improve accessibility, respiratory equipment, Hoyer lifts, eye-driven communication devices and more.

Whitlock-Wild estimates the costs at $250,000 to $350,000 for the most basic needs. Caregiving expenses can run $25-35 per hour and skilled nursing care demands $40-$75 per hour.

Seven years ago, Whitlock-Wild’s husband was diagnosed with ALS at the age of 41, shortly after the couple began their relationship.

Matt’s pinky finger was sticking out “a little funny.” Soon he had difficulty picking up a pen, couldn’t button things and couldn’t type, Whitlock-Wild said.

“It slowly started adding up,” she said.

Matt went to see his primary care physician and was diagnosed within a few weeks. A speedy diagnosis isn’t the norm. Most diagnoses take about 12 months.

“During that time they’re missing out on therapy, and missing out on drugs,” Whitlock-Wild said. “We know the sooner they get drugs the better off they are.”

In facing Matt’s diagnosis, their biggest concern was what treatment would cost, Whitlock-Wild said. Matt is a Marine Corps veteran and the couple learned the Veterans Administration would provide amply for his care.

Realizing the immense costs and that many patients don't have VA support, the couple launched their nonprofit in support of other families facing the same devastating diagnosis.

To date, Matt’s Place has helped support over 50 families living with ALS. They provide grant assistance to fund accessible ramps, bathroom renovations and provide mortgage/rent assistance.

During their inaugural year, the foundation raised $14,912. In 2021, they raised $212,000.

In 2017, the foundation built the first “ALS smart house” in Coeur d’Alene. Families live in the home rent-free for the duration of their battle against ALS. The home is hosting its second ALS family now.

“What we’re hoping that does is offset some of those additional costs,” Whitlock-Wild said. “To help keep them out of medical bankruptcy, and maybe travel and do bucket-list items while they have the energy, time and resources to do it.”

This spring they anticipate completion of their second ALS home, this one in Spokane. It will be a state-of-the-art interactive home, designed to accommodate the ALS patient and their family.

“The other thing is we’re using better products and the idea is to make these scaleable to ship around the country,” Whitlock-Wild said. “We’re not there yet but we’re getting close.”

Matt’s Place is looking for volunteers for their committees, as well as energetic board members wanting to take on leadership roles, Whitlock-Wild said. They continue to build their endowment fund to support those living in the ALS homes.

The Inland Northwest has a lot of ALS resources, but Whitlock-Wild believes we “need to do better for everyone across the country.”

Visit mattsplacefoundation.org for more information, to donate or to volunteer.