This Mom Won't Let Debilatating Disease Set Her Limits

Bridgewater resident Marci Lotter always enjoyed her workouts—she stayed fit and healthy, keeping in shape by running on a treadmill.

And when she noticed she had a slight limp in her running form while working out in 1995, she didn't think too much about it—but her physical symptoms started escalating, growing worse after she gave birth to her two sons, Zach, 14, and Drew, now 12. 

Unsure of what was happening and unable to find any local diagnosis, she went to the Mayo Clinic, in Rochester, Minn., in 2001 where the doctors discovered she had developed a rare and progressive disease called Chronic Inflammatory DeMyelinating Polyneuropathy.
 
"I felt devastated when I found out about the disease," she said. "The symptoms came on when I started my life as a wife and mom and saw the whole world in front of me. Getting diagnosed was difficult. 

"I was misdiagnosed several times and only after four trips to the Mayo Clinic in Rochester, did I learn I had this rare neurological disease," she added. 

CIDP is an acquired immune-mediated inflammatory disorder of the peripheral nervous system that causes severe drop foot and complete muscle loss from the knee down in both legs—that forced Lotter to have to wear braces. 

The disease has also caused her severe muscle loss in her hands, making simple tasks of doing a button or putting on a necklace next to impossible.

There's no cure for CIDP, although she has been getting weekly IV treatments called IVig (intravenous Immunoglobulin) to keep the disease at bay.

But since she describes herself as "an extremely Type 'A' personality," she still exercises every day to keep her upper body strength.

"Maintaining my rigorous exercise routine was never an option," Lotter said. "First, I love exercising and always have. I was determined to maintain and build strength where the disease does not affect; I eat very healthy and believe that my diet and exercise helps me mentally and physically."

This year, Lotter set a lofty goal: to participate in a 5K event, which she did with her husband and sons at the Lehigh Valley Color Run, a fun-oriented event where many participants wear colorful clothes or costumes.

"It was the most fun getting blasted with color—and that helped mentally to push me along," she said.

Next up for this fighter? A 10K.  

"As long as I'm permitted to walk it...I'll be training for that next!" she said. "I cannot let this disease get in the way of my life!"

Lotter said that even though the disease "can seem invisible," it takes a steep toll on her, physically—but she's not letting it get her down.

"There is pain and grand fatigue that are a part of my every day life," she said. "I go beyond what I feel like I can handle.  It is just who I am."