Leading Milwaukee chef Dan Jacobs confronts Kennedy's Disease diagnosis with quiet grace

Dan Jacobs, who has led the kitchens at some of Milwaukee's top restaurants, loves the everyday tasks — turning apples and potatoes, cutting green onions for garnish, peeling eggs.

Now, there are days the chef has trouble opening cans and jars.

Jacobs, who opened the Chinese-American restaurant Dandan in the Third Ward with chef Dan Van Rite in summer, learned last year that he has Kennedy's disease, a genetic neuromuscular ailment that's often mistaken for ALS, or Lou Gehrig's disease. People who have the rare inherited disease suffer muscle atrophy.

People who have Kennedy's tend to live a normal lifespan, or nearly so. But the disease is progressive. Jacobs, 38, knows it's likely to get worse, although there's nothing to indicate how much or how quickly. No cure or treatment exists for the disease.  

Chefs spend their days and nights standing, chopping and cooking; Jacobs, on some days, must make a concerted effort to simply walk. It can be painful to open and close his hands.  

It also can be difficult for Jacobs, who must taste for his job, to swallow some foods, such as dry bread. It can feel like he's choking. His voice has started to sound scratchy, as if he's been shouting at a football game, he said. Kennedy's affects throat muscles along with muscles in the arms and legs. Some people who have Kennedy's lose the ability to walk in their 40s, some in their 50s, some never, Jacobs said. 

He has organized a fundraiser March 12 with more than 30 restaurants and other businesses at the Italian Community Center to benefit Kennedy's disease research. 

'A good balance'

Jacobs, a native of Chicago, moved to Milwaukee in 2011 and gained recognition for his work first at Roots, then Wolf Peach and Odd Duck restaurants. He left Odd Duck to open his own restaurant with Van Rite, former chef of Hinterland. The two have since opened EsterEv, a second restaurant within their restaurant that serves a tasting menu.

Jacobs learned he had Kennedy's not long after he, Van Rite and their investor began planning the high-profile Dandan. "One and a half months after we signed the lease, we got this news," Jacobs said.

"What am I supposed to do, am I supposed to just give up?" Jacobs said. "I've been in love with this since I was 18 years old, this cooking, working in professional kitchens. And right after I get my own, this happens."

Van Rite, he said, has been supportive.

"It's been a good balance so far," Van Rite said, adding that he prepares for dinner during the day while Jacobs does office work, and the two work together at night, leading the kitchen staff.

"That's the beauty of having two of us," Van Rite said. "We kind of rely on each other."

Early signs

Looking back, Jacobs thinks of incidents that might have been early signs of the disease. When he moved to a new apartment several years ago with hundreds of cookbooks in tow, a chef friend, Paul Zerkel of Goodkind, helped him carry the books upstairs two bags at a time. Jacobs found he was having trouble negotiating the steps.

He was just out of shape, he thought, and started working out with his wife, the artist Kate Riley. Jacobs found that she progressed to do things he couldn't, like lifting a 16-pound dumbbell over her head. If he knelt on one knee with the other leg bent in front of him as if genuflecting, he couldn't stand up without putting his hands on the ground. 

A trainer thought he might have hip trouble; a physical therapist was the first to wonder if it could be neurological. 

In February, Jacobs underwent more than six hours of tests at the University of Chicago, where his brother's wife is a neurologist. That was followed by more aggressive testing. 

It was thought at first he might have ALS, multiple sclerosis or Parkinson's disease. Then came the diagnosis of Kennedy's. Jacobs called it "the best of the worst-case scenarios." 

"It's not nearly as life-threatening," he said.

However, because the disease is inherited, the brother whose wife is a neurologist also was tested. He, too, has the disease, Jacobs said. Jacobs does not have children, and does not want to pass on the disease.

'Wake up and wonder' 

The pain is constant, Jacobs said. Some days he rates it a 4, others an 8 or 9, on a scale of 10. 

"You just wake up and wonder, 'How is this day going to be?' "

He was prescribed a low-level barbiturate for the pain but doesn't take it; he'd rather deal with the pain than develop an addiction, Jacobs said.

Dandan's sous and pastry chefs help him in the kitchen when he needs it. Pastry chef Jaceleen Latin-Kasper is one of the staff who'll open a jar when needed; afterward, she'll be struck by how easy the task was.

Jacobs, she said, only lets on to how he's feeling on the worst days. "He's not moaning and groaning around the kitchen," Latin-Kasper said.

"His attitude about it has helped everyone else keep their spirits up," she said.

Jacobs had hoped that numbness in his right hand was carpal tunnel syndrome, but a doctor in October confirmed that it was the progression of Kennedy's.

"That's when I realized there's a real finality to this," Jacobs said. 

"In five years, I don't know if I'll be able to do this."

DIM SUM + GIVE SOME

More than 30 restaurants and businesses have lined up to donate food and drink for a cocktail-party-style fundraiser for research of Kennedy's disease. The event is called  Dim Sum + Give Some.

"The support that everyone's given us is just crazy, and it really affirms that in general, people are just good," said Dan Jacobs, the Milwaukee chef diagnosed with Kennedy's in 2016.

When: 3 to 6 p.m. March 12

Where: Italian Community Center, 631 E. Chicago St. (Parking lot available.)

How much:Eventbrite.com

Who's taking part: All Purpose, Amilinda, Ardent, Bass Bay Brewhouse, Bavette La Boucherie, Blue's Egg, Braise, Buckley's, c.1880, Cafe Grace, Colour Palate, Dandan, Fein Brothers, Goodkind, Hello Falafel, Hinterland, I.d., Iron Grate BBQ Co., Karl Ratzsch, Lake Park Bistro, Maxie's, Merriment Social, Morel, the National, Odd Duck, Pastiche at the Metro, Sanford, Story Hill BKC, Supper, SURG restaurant group, the Vanguard, Wolf Peach, and Birch and Butcher, a restaurant and butcher shop by chef Miles Borghgraef, expected to open in spring downtown. 

Event sponsors are Badger Liquor, Bartolotta Catering Co., Beechwood Sales & Service, Burnhearts bar, Capitol-Husting Co., Fortune Fish, V. Marchese Inc., Rev Pop, Surly Brewing Co. and Sysco.