Give him some time. Brendan Brady has gotten handy at so many things in the seven years he’s lived with the deadly degenerative disease known as ALS, or Lou Gehrig’s Disease.
It’s only a matter of time before the 35-year-old Havre man will be able to literally stare down a bucket of ice water onto the likes of Julie Doerner.
As it was Tuesday, Brady got the job done operating the joystick on the right arm of his power chair. He rolled steadily forward, a slight smile on his face, in the parking lot of Pattee Creek Market until gallons of water mounted on a light post doused Doerner.
“I think you got every drop on her,” Brady’s father Jack noted as his son accepted a hug from a dripping Doerner, clinic coordinator for the University of Montana Rural Institute’s MonTECH program.
“You did that. Nobody else. Nice job,” she said.
It was another high point to a memorable weekend for the Bradys, who were on their way home to Havre from the Gorge in Washington. Jack, Linda and Brendan were joined by Brendan’s sister, Amanda Parker of Challis, Idaho, to make the Dave Matthews Band’s annual festival a family affair.
It was the ninth time Brendan had seen the band, and the second time since the insidious disease showed its face. The highlight came Sunday night, when a man appeared in the crowd of tens of thousands of fans. He’d been sent by Matthews to present Brendan with a signed set list, one that included such songs as “One Sweet World” and “So Damn Lucky.”
Brady, a former swimmer for the Havre High Blue Ponies, was an engineer for Burlington Northern Santa Fe based in Whitefish in 2007 when symptoms of the disease first appeared. They came in the form of “skin crawls” or twitches, Jack Brady said, and Brendan can kid his dad about them now.
“He says that’s his exercise program. He tells me I should go on an exercise program. I say something to him, and he says, ‘I’ve already got one.’ ”
Doerner met Brendan just a few weeks ago at an ALS practical solutions workshop at Community Medical Center, where he got his first tutelage in the Eyegaze Edge system. On a tour of reservations last week, Doerner stopped by the Brady house in Havre and helped set him up with one. She invited him to stop by in Missoula for further assistance when he was out this way.
It’s something Brady knows he’ll need as the disease works away at his body.
“With ALS, there’s no treatment and as it progresses you can’t move. So technology becomes your friend,” Brendan explained with help from his mom.
The Eyegaze system uses technology that’s been around for more than a decade but is constantly improving. A video camera mounted below a screen attached to his power chair observes one or both of Brendan’s eyes. Software analyzes the camera’s images 60 times per second to determine where he’s looking on the screen.
Properly calibrated to his eye, the machine presents a variety of keyboards and cells with which Brendan will be able to type commands by looking at a particular key for a half second or so. Doerner said the time period can be adjusted to personal taste.
There will be any number of uses for it as the disease worsens, she said. But on Tuesday, Brady was having problems getting his small screen calibrated. Like so many other things, it’ll take time.
“Í really wanted this to be Eyegaze activated,” Doerner said of her dousing. “We could have had a mechanism that was operated through Bluetooth, and then he would use Eyegaze to mechanically control the dumping of the water.
“It’s a work in progress. We all have experienced technology that doesn’t work.”
The Bradys noted that they’ll be back in town Oct. 4 for a Walk to Defeat ALS at McCormick Park. It comes at a time when the disease that cut short New York Yankees slugger Lou Gehrig’s baseball career in 1939 and killed him two years later is entering the national lexicon.
The ALS Association said Tuesday that funds raised by the YouTube sensation Ice Bucket Challenge had reached $106 million. That compares with a total of $2 million garnered all of last year, Jack Brady said.
“That’s like 10 minutes of the Jerry Lewis Telethon. I mean, (the challenge) is just phenomenal for research and attention.”
At first the Ice Bucket Challenges were “kind of overwhelming” for his son and family, the older Brady said. “He’s a little shy to really be in that kind of limelight, but now that you’re seeing the good of it, it’s easier to do it.”
Indeed, Brendan dropped water on his own head in Havre last month and passed on the challenge to others. That called local attention to the disease and set fundraising in motion for the Missoula walk in October.
On average, roughly two people in every 100,000 come down with ALS, but in the relatively small Hi-Line town of Havre three people have the disease and two others recently died from it, the Havre Daily News reported in August.
The Bradys say Brendan hates it when it’s said he’s “suffering from ALS.”
“He says he’s living with ALS,” Linda Brady said, translating for her son. “ALS suffers from him because he’s so stubborn.”