‘Brutal disease’ changes a family: Nienows face multiple sclerosis

MIDDLEBURY — Mike Nienow thought the persistent pain in his left leg was simply the result of a bad pair of clogs, the footwear of choice for culinary school students at the Patricia Hannaford Career Center.
“It started with the back of my knee; I felt some weird pressure,” Nienow recalled.
But being a bullet-proof 17-year-old with a busy school schedule and social life, he didn’t think too much of it at first.
Then the pain became persistent enough that he switched to a new pair of shoes.
But his leg kept barking at him.
“It started to get worse, and my leg started to ache really bad,” he said.
Nienow visited a chiropractor, who suggested a pinched nerve was the problem. So he prescribed some stretching exercises designed to bring some relief.
No dice.
“A week goes by, and all of a sudden my elbow starts to get tight,” Nienow said.
So he visited his pediatrician, who advised him to “check this out at the next level.” Nienow made an appointment with a neurologist, who scheduled him for an MRI exam to search for clues inside his body. By this point, he was feeling like his left arm and leg were falling asleep. Walking and other basic body movement had become a major chore.
He vividly recalled receiving the results of his MRI from his physician.
“He was very matter-of-fact,” Nienow said. “He read off a scientific explanation of what was going on … and at the end, wrote the initials ‘MS’ on a piece of paper, circled it, spun it around, and gave it to my mom and I.”
Two small letters with a life changing impact.
Multiple sclerosis.
It’s a chronic and typically disabling disease that attacks the central nervous system — specifically the myelin, a fatty substance that surrounds and protects the nerve fibers of the brain and spinal chord. The damaged myelin forms scar tissue (sclerosis). Nerve impulses traveling from the brain are distorted, thus creating such symptoms as tingling, numbness, pain, slurred speech, muscle weakness and poor balance (see related story).
There are medications and regimens to help MS patients better cope with the disease, but no cure — as of yet.
“My mom kind of broke down, and we talked about what this would mean,” Nienow said. “I was scared; I still am. MS is a brutal disease.”
He stoically elected to take an optimistic approach to the bad news.
“I remember turning to my mom and saying, ‘At least it’s not brain cancer,’” Nienow recalled. “We can deal with this. My reaction was, ‘It could be a lot worse.’”
MAKING PLANS
Now 31, Nienow continues to deal with MS, with the help of his wife, Jessie, 29, and his parents, Jackie and David Nienow. Dealing with the disease will have to mean changes in his life in order to better cope with the constant tingling, disruptive pain and fatigue. One of the biggest changes will involve reinvention of the family’s popular Nino’s Sicilian Pizza restaurant in Middlebury, where the constant standing, exposure to heat and intricate manipulation of dough has been exacerbating Mike’s MS symptoms.
He wants some relief from the pain. And more time with Loretta, his and Jessie’s one-and-a-half-year-old daughter.
“I want to be a dad. I want to be a coach,” Mike said. “The MS is screaming at me to take a moment to chill out.”
With that in mind, the family’s current plan is to close Nino’s in mid-December for an extended holiday, then reopen in early January with a more diverse menu under the moniker, “Nino’s for Lunch.” Nino’s will shift to daytime hours, Monday through Friday.
The move will give Mike, Jessie and their daughter more family time, while continuing to allow them to serve their faithful customers and pursue an additional venture to be headed up by Jessie: a childcare facility. She plans to open a child care service out of their home once they move to Salisbury, after selling their current home on Mead Lane in Middlebury.
“We think we can do both (the restaurant and child care), and to do it the right way is to scale back the restaurant,” Jessie said.
It’s a new game plan aimed at helping the Nienows achieve more balance in the company of an unwelcome visitor, a disease that affects a staggering one in 400 Vermonters — more than twice the national average.
Mike has a “relapse and remitting” form of MS in which his symptoms can hit him hard, then ease up. It’s unpredictable.
“I think I have been pretty fortunate to have the type of MS that I have, compared to other people that have a much more degenerative, short-term diagnosis,” Nienow said.
COPING
Soon after his diagnosis, Mike took medicine, including interferon (a type of protein) shots, to combat his MS symptoms. But he found the side effects of the medication — such as flu-like symptoms — to be an added hassle. So he weaned himself off such meds a decade ago in favor of a diet that is devoid of gluten and flour, but rich in Vitamin D and water.
“It has a lot to do with inflammation of your joints,” he said about his avoidance of certain foods.
Of course the irony is not lost on him of trying to skate clear of gluten and flour in a pizzeria, where dough is king.
“I consume gluten and flour seven days a week just by being in that (kitchen),” Mike lamented.
And in addition to working regularly with some of his greatest food adversaries, he’s also in constant proximity to a screaming hot pizza oven. Most MS patients have a severe intolerance to heat, and Mike is no exception.
“Heat is a huge one,” Mike said. “There’s nothing worse than the heat. I run my elbows and arms under cold water and massage it into my fingers, and I get immediate relief.”
Mike is constantly hydrating, and is a firm believer in the benefits of Vitamin D, a byproduct of sunlight that is unfortunately in short supply in Vermont during the winter.
“I try to keep everything lubricated,” he said. “Every tiny joint in between every tiny bone relies on water. When I don’t get enough water, I notice it immediately.”
A recent study conducted at Maastricht University in the Netherlands suggested that for people who already have MS, vitamin D may lessen the frequency and severity of their symptoms.
Mike’s way of dealing with MS thus far has been to push through it, to force his body to perform motions that were child’s play when he was a teenager — and, by the way, a solid Middlebury Union High School soccer player. But it’s gotten harder for him to put on a brave face.
“One-hundred-and-ten percent is his only gear,” Jessie said. And that’s during a 50-plus-hour work week.
Mike Nienow sees his determination as an asset, but it’s a double-edged sword. There are times when he believes he will feel worse if he doesn’t work at full speed.
“I get up on days like today and feel like crap, and I tell myself it’s not MS, that it’s just exhaustion and that I’m not having an (MS) episode right now,” Mike said.
Mike and Jessie, 29, have always been a great team since they began working together at what was then “Ramunto’s” more than a decade ago. Mike’s dad, David — a legend in the local food service industry — originally launched the pizza business about 13 years ago. Mike and Jessie started working weekends there while they were still in college, then began running the small enterprise around five years ago, ultimately changing its name to Nino’s.
“It’s not only the time that you’re physically there. You’re there emotionally all the time,” Jessie Nienow said of the business activities that take place after hours. “It’s all-consuming.”
FAMILY TIME
And painfully, that has meant fewer hours with Loretta. Mike recalled having to leave the hospital the day after Loretta was born in order to deal with restaurant responsibilities.
“You cannot understand parenting until you’re in it,” Jessie said. “You don’t realize how present you want to be, until you’re not.”
“Food service is a really tough job to have and still be a present parent,” Mike added. “MS is an obvious reminder, when I can’t move or feel my face.”
It’s 10 a.m. on this particular day, and Mike already looks exhausted. You can see it in his young eyes and in the economy of his movements. He and Jessie still have a long day of work ahead of them. By the time they get home, Loretta will tragically have to compete with MS for her dad’s attention.
And MS is currently winning.
“We’ll be at home with Loretta and she’s playing, and I don’t even want to hang out with her. That’s how tired my body is. That is so (screwed) up. I want to want to hang out with her. It’s like you don’t even have enough physical energy to tell your body to do that, that the MS is saying, ‘I am not even going to let you hang out with your daughter,’ which brings me to tears when I think about it. I want to want to hang out with my kids, and I know that I will. I just know my body is just telling me right now that ‘You can’t do that.’”
The Nienows said that paring back on business hours will give them more quality time with Loretta and allow them to become more invested in their community. They want to attend such events at Festival on-the-Green and become bigger players in helping the people to whom they provide food.
“I definitely feel at the end of the day, ‘Wow, I fed several hundred people today,’” Mike said. “That’s great, but it’s not like I built a house or wrote a book. My hard work is gone immediately. It’s not like being a mason. You’re not going to see my hard work during the next 100 years standing there.”
Jessie joked that Nino’s regularly creates community monuments.
“When we drive by on a recycling day and see those Nino’s boxes out, we feel good,” Jessie said.
Mike will continue to hope for lengthy periods of remission from MS. He doesn’t know when and if his condition could take a substantial downturn. He is particularly worried about the lesions on his brain stem, which he fears could ultimately affect his ability to breathe, walk and swallow.
“I try not to think about it too much,” Mike said.
He advises other MS patients to think positive, take care of themselves, and to above all become their own best advocate when it comes to their own health care.
“Everyone knows that without health, you don’t have much,” Nienow said. “When something happens (to your health), all of these other things melt away, and families come together.”
To learn more about MS in Vermont, see related story, “MS is striking Vermont particularly hard.” Reporter John Flowers is at johnf@addisonindependent.com.

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