"Not having these locks you away from the world:" How YOU can help ALS patients get the speech generating devices they need

MILWAUKEE (WITI) -- "His daughter was about one when he was diagnosed, and we watched him go from a walker to a wheelchair to a breathing machine, so it was really difficult," Grant Korting said.

Over the mountains, across the plains, and into Wisconsin.

Grant Korting is riding his bike from Oregon to Ohio for an old friend. His childhood buddy in Ohio has ALS -- Lou Gehrig's Disease.

Korting is raising money for an organization called "ALS Guardian Angels." The organization provides expensive medical equipment for people with ALS -- free of charge.

One of the devices ALS Guardian Angels helps to provide are "speech generating devices."

Their work is even more important now -- given a recent ruling by Medicare.

You've probably seen the Microsoft ad from the Super Bowl. Former NFL player, Steve Gleason, who has been diagnosed with ALS, uses his eyes to type letters. Software generates spoken words.

ALS robs your brain of its ability to communicate with your muscles -- all of them. You lose the ability to move, to speak, to swallow, and ultimately, to breathe.

Speech devices allow ALS patients to bank their own voice if they have enough warning -- and to get program shortcuts.

"Some of the buttons I added were for prescriptions, personal information, and phrases I use regularly such as 'good night dear,'" Sheila Salsman said.

"Dear" is her husband Loren.

"I find it faster to type with my fingers, but I know one day I will lose that ability," Salsman said.

She may also lose her speech device one day.

Over objections from Congressional leaders, and against nearly 200 comments during the rule-making period, the Centers for Medicare and Medicaid Services (CMS) has reclassified how it covers these devices.

They are seemingly small changes that could have devastating results.

Patients who have a long hospital stay, or who enter hospice during the first 13 months after getting the device lose their coverage. They have to give their speech device back -- with all the customized programming -- even their own voice, if they've banked it.

All of it can suddenly be gone.

"That's cruel, really," Trickett Wendler said.

Wendler, of Waukesha, has ALS. She knows that one day, she'll be using a speech device.

"I'm starting to prepare for losing my voice. That's the time when you want most to tell your doctors what kind of treatment you need, is something working, are you in pain. You want to tell your family what your wishes are," Wendler said.

The rules require the hospital or hospice to provide a replacement -- but speech devices aren't like crutches or a walker. They're more like a prosthetic limb -- an extension of a person. They are highly customized and personalized.

"Not having these specially programmed speech generating devices simply locks you away from the world," Tom Kettler with the ALS Association said.

Another change Kettler and the ALS Association are fighting starts in September: Patients will no longer be able to use their speech devices for internet, email, Skype and so on.

CMS says: "Medical necessity for long-distance communication is not established in the national coverage determination."

In other words, speech devices can be used only for face-to-face communication. Any other use disqualifies it from coverage.

"Why they would do that is mind-boggling," Jim Eutizzi said.

Eutizzi has ALS, and relies on email to communicate. Soon, he'll be using a speech device.

"They think people like myself will be playing games.  I'm sorry, this is not a game," Eutizzi said.

The ALS Association is teaming up with lawmakers and other agencies representing a range of disabilities and diseases.

"To get this overturned," Tom Kettler said.

You can help Grant Korting raise money for ALS Guardian Angels -- so ALS patients don't have to rely on Medicare for their speech devices.

CLICK HERE to visit Grant Kortin's crowd-funding page.

Next Friday night, July 11th at Miller Park, join FOX6's Brad Hicks for the "Chasin' A Cure" tailgate party before the Brewers take on the St. Louis Cardinals.

You’ll get great food and drinks, a Chasin’ Mason concert, a limited edition T-shirt and loge level seating to the Brewers vs. Cardinals game.

The tailgate starts at 5:30 p.m., and gates open at 4:10 p.m.

CLICK HERE for additional information on the Chasin' A Cure Tailgate Party.