Staying positive while battling multiple sclerosis

(March 6, 2015) Berlin resident Lori Heinz-Giampa said staying positive has been her secret weapon during her 21-year battle with multiple sclerosis.

Berlin resident Lori Heinz-Giampa will take part in a multiple sclerosis walk in Ocean City on April 11. A fixture of the Berlin Visitor’s Center, Heinz-Giampa has battled the disease for more than 20 years. (JOSH DAVIS/PHOTO)

A fixture of the Berlin Visitor’s Center, Heinz-Giampa was diagnosed with the disease in February 1994.

“It was scary initially,” she said. “I was falling. I was dropping things. I was getting the title, ‘you’re so clumsy.’ I wasn’t feeling things with my hands. I could feel pressure, but I wasn’t feeling weight. I thought, ‘Well, I need to go to the doctor.’”

After describing her symptoms, Heinz-Giampa’s doctor scheduled an MRI. The results came back positive for MS.

“It was pretty relevant that I had lesions on the brain and brain stem, and I had actually two on the spine already,” Heinz-Giampa said. “It was a definite multiple sclerosis.”

Heinz-Giampa was diagnosed just months after marrying her husband, Frank, in October 1993. She was working in an office in Pennsylvania at the time.

“My grandmother was very upset,” Heinz-Giampa said. “She said, ‘Now you’re diagnosed with something where there is no cure.’ I went, ‘there might not be a cure now, but in my lifetime there will be.’”

One of the trickiest aspects of having MS, Heinz-Giampa said, is finding the right balance in selecting a medication.

“I’m on a medication for two years and then I start having relapses,” she said. “Then I change medications.”

When her son was 3 years old, Heinz-Giampa suffered a particularly difficult period of relapse.

“I told my doctor I wanted to try another medication because I was having another relapse and he said no,” Heinz-Giampa said. “He said, ‘Nothing’s going to work, Lori. By the time your son is 5, you’re going to be in a nursing home for 30- and 40-year-olds unable to feed yourself, talk, walk or anything.’

“I said, ‘You know what, if you’re not going to try me on this medication you’re fired as my neurologist,’ and I walked out,” Heinz-Giampa continued. “I found another doctor and I told him I wanted to try this other medication. He said, ‘Well, why not? It can’t hurt.’”

Seven years ago Heinz-Giampa moved from Pennsylvania to Berlin.

“I was a little nervous because I was very happy with the new doctor that I did have,” she said. “I called the MS Society when I got here just to find out where I could go, and I was referred to a doctor, who is no longer here, but he referred me to another doctor who I’m very happy with, so it was a good thing.”

The medical facilities in Maryland have been good to Heinz-Giampa, but the town of Berlin itself has meant nearly as much in her ongoing struggle with MS.

“I have done my falls and I’ve fallen in Pennsylvania and I’ve had people beep their horns at me like, ‘get out of my way,’” she said. “I fell in a parking lot in a supermarket and somebody actually beeped at me because I was in their way and in a hurry.

“Here, I just fell the other day at Bank of Ocean City,” Heinz-Giampa continued. “I will tell you I had four people on me without hesitation. You’re in a whole different environment here.”

Heinz-Giampa enlisted as a volunteer in Berlin seven months ago after seeing a broadcast about the town’s ambassador program.

“I thought, ‘You know what? I can do that,’” she said. “I figured it would get me out of the house and I could talk to people. I wouldn’t be sitting around the house thinking about things too much. I thought if I just got out and moved more it would be great.”

Heinz-Giampa called former Main Street Coordinator Megan Houston and set up a meeting.

“I told her, ‘I’m going to be honest with you: I have MS and I’m not going to be able to sit or stand outside in the heat,” she said. “She goes, ‘Perfect. Not perfect that you have it, but perfect. I can use you in the Visitor’s Center.’”

The experience, Heinz-Giampa said, has been wonderful.

“It’s different in the summer, but we still get a little bit of visitors now,” she said. “Some people ask for directions or what’s to do in the area. And since I’m here, I’ll offer what can I do for [Economic Development Director] Ivy [Wells] and even [Chamber of Commerce Administrator] Jim [Volk]. They’re both wonderful, and it’s nice to see different people come in from different businesses and getting to know people.”

Heinz-Giampa said there has been some progress in multiple sclerosis treatment since her initial diagnosis more than two decades ago.

“I was not walking with a cane, and now I’ve been walking with a cane for a little over a year,” she said. “I try very hard to not mask it as much as I can. I try to be strong. I always say it’s ‘the beast that lies within you.’

“It’s been an up and down battle, but I do believe that when dealing with that you need to be positive,” she continued. “I do believe in a positive attitude and the power of prayer.”

On April 11, Heinz-Giampa will take part in a multiple sclerosis walk in Ocean City with her team, Lori’s Angels.

The team first walked in Pennsylvania when Heinz-Giampa’s son Frank was 5 years old.

“After he completed the first walk he said, ‘OK Mom, I did the walk. Now is your MS gone?’” Heinz-Giampa said. “I will never, ever, ever forget that. I said, ‘Boy I wish it was that easy, Frank.’”

The walk, which will begin at 10 a.m., will be from the Boardwalk at the inlet to 19th Street and back. Registration begins at 9 a.m.

Proceeds from the walk go toward multiple sclerosis research.

For more information, contact Whitney Pogwist at 443-641-1227, by email at Whitney.Pogwist@nmss.org or visit www.walkmdm.nationalmssociety.org/site/TR/Walk/MDMWalkEvents?pg=entry&fr_id=25136.

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