Former Marine Ed Shawley used to guide anglers to lunker bass, until a rare, terminal disease inflicted a triple whammy on him harder than a largemouth slams into a treble hook.
“It completely changed my life. I can’t drive no more, and I can’t fish no more,” said Captain Ed, an unofficial title that’s a holdover from the 5-year-old Fishfoot Guide Service he had to close last year because of his multiple system atrophy.
The 53-year-old La Crosse man was diagnosed two years ago, after struggles with balance that included tumbles from his boat that he initially blamed on recovery from knee surgery.
“I almost drowned last year, when I was half in and half out of the boat,” he said.
Difficult to diagnose, MSA is so rare that it affects as few as 15,000 Americans, according to the National Institutes of Health. The disease, which advances rapidly over five to 10 years, includes progressive loss of motor skills, eventual confinement to bed and a life expectancy of seven to nine years after diagnosis.
“I plan on living a lot longer than that,” insisted Shawley, who likens the disease to the triple threat of having ALS, MS and Parkinson’s disease at the same time.
Surrounded by family, friends and caregivers in the kitchen of the comfortable North Side home where his wife, Patty, grew up, Ed teared up frequently during an interview.
“It’s a hard thing, dealing with your mortality,” Ed explained. “I wish I was immortal.”
The love between the couple, who have been together 27 years and married for 16, is apparent in Patty’s protective tenderness and his equally gentle response.
“It will start to affect my heartbeat, my breathing and my blood pressure,” Ed said.
“It’s already affecting his blood pressure,” said Patty, who works at ResCare in La Crosse, which provides care to people to help them remain in their homes.
Rhea Anderson, a ResCare colleague who tends to Ed when Patty is working, said this is the first patient she has had with MSA.
Most doctors are unfamiliar with the disease, but Ed has a care team that includes his primary care physician, Dr. Edward Malone, and neurologist Gregory Pupillo, both at Mayo Clinic Health System-Franciscan Healthcare in La Crosse, and specialists at Mayo Clinic in Rochester, Minn.
Anderson and Patty attested to Ed’s courage in confronting the disease, including frequent physical therapy to keep his muscles moving and trips to Rochester for additional treatment.
“He keeps me up,” Anderson said.
“He stays very positive,” Patty said. “He goes day by day, but he definitely stays positive. He’s not giving up, and I love that about him.”
He falls often and struggles when temperatures rise.
“I don’t do good in heat anymore because my body can’t regulate temperature,” he said.
A La Crosse native who attended Logan High School, Ed said he quit school to join the Marines, serving in Hawaii.
After that, he worked as a drywall installer before launching Fishfoot five years ago, a venture frustrated by the fact that his Bass Tracker 175 headed into the jaws of the recession.
He caught the fishing bug from his father, Bob, as they fished the backwaters around French Island, where he grew up.
“He would fish 24/7 if he could,” Patty said. “It was one of the hardest things for him to give up.”
Ed favors bass, and he retains his encyclopedic knowledge of fish habits, suggesting that a bass angler should use jerkbaits this time of year.
While Ed tires easily, he is a hobbyist photographer: “I still take pictures.”
He has two wheelchairs — one motorized to accompany Patty on walks around the neighborhood and one manual that Patty pushes when they are out and about.
Amid the Shawleys’ struggles, family friend Stacy Johnson agreed to Patty’s request to employ her talents as a fundraiser.
“After reading about MSA, I couldn’t say no,” said Johnson, who is organizing two fundraisers:
“This is my biggest goal yet,” Johnson said of the poker run.
Asked what that target is, Johnson said, “We’re hoping to raise enough to get Ed stem-cell research in Germany that isn’t available in the United States. There is a clinical trial there.”
Another objective, she said, “is to help him complete his bucket list.”
Ed acknowledged that the list isn’t long, saying, “I’d like to go fishing down in Texas once, and I’d like to go to Mardi Gras.”
But he said he’s wants to get the word out about the disease.
“It’s not only me it affects,” he said. “It’s everybody around me,” including the couple’s blended family of three children and three grandchildren (and another to arrive soon). “My wife has been great.”
“It’s very hard to watch,” Patty said. “It’s not easy having someone come into your home (while she works). It’s very hard to leave him.”
Ed gets up and has breakfast with Patty, naps intermittently during the day and goes to bed at 6:30, she said.
“It’s frustrating that he has to go to bed so early, but he is so tired. We only have about two hours a day together,” she said.
The message on the Shawleys’ answering machine still tells callers they have reached Captain Ed’s Fishfoot Guide Service, a salutation he said he hasn’t taken the time to change.
“I don’t want him to change it,” Patty interjected. “It’s sentimental to me.”