Old Lyme — Heather Stevens Rumm prefers not to use her handicapped parking permit.

"I would never, ever, ever use a handicapped parking spot unless I needed it," said Rumm, a 46-year-old wife and mother who was diagnosed with multiple sclerosis five years ago.

But MS is a disease that people don't necessarily see, and sometimes, on those "really bad days" when Rumm uses her parking pass, she knows she's being unfairly judged.

"I've gotten snide looks when I've parked in a handicapped parking spot and MS websites have these stickers that say, 'You want to give me a dirty look? You want my parking spot? Well you have to take my MS, too,'" she said.

Rumm doesn't hand out the stickers, but she understands why others with her diagnosis do. Her focus instead is on educating the public about MS and helping to raise funds toward research. Next month, she will be featured in "MS Connection," the quarterly online newsletter of the Connecticut Chapter of the National Multiple Sclerosis Society. And she's been trained as an MS ambassador, a volunteer who can help to spread the word about MS and the programs and services offered by the state chapter.

"My main goal is to get the word out there about what MS is and to promote awareness of the disease," she said. "Yes, of course I want a cure. That is my biggest hope and prayer that there will be a cure for MS, but right now, I just need new medications coming down the line. And I want people to know what MS is, and that it is different for everybody."

According the National Multiple Sclerosis Society, MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms are varied and unpredictable — no two people have exactly the same symptoms, and each person’s symptoms can change or fluctuate over time.

The cause of MS is not known, although experts say it is not contagious or directly inherited. 

It is estimated that 2.3 million people worldwide are affected by MS, but because the Centers for Disease Control and Prevention does not require U.S. physicians to report new cases, and because symptoms can be invisible, the prevalence of MS in the U.S. can only be estimated.

'Go to the doctor'

Rumm, a former elementary school teacher in Montville, attributed her early symptoms to new sandals she was wearing.

It was the last day of school in June 2011, and she was at a staff development day when she noticed her feet were numb and tingling.

Later that evening, at home, her feet were still not right and those numb and tingling sensations moved up her legs. She mentioned what she was feeling to her husband, and they agreed it wasn't cause for concern, and maybe it was a pinched nerve. The next day, she could walk, but felt a prickling, tingling numbness up to her waist, then to her shoulders, and over lunch with a girlfriend, shared what she was experiencing.

"I told her, 'This is crazy,' and she said, 'Go to a doctor.'"

Rumm went to see a general practitioner, and after routine tests, it was recommended she visit a neurologist. For days she tried to get into a neurologist's office, but they were booking months ahead, and with her numbness and tingling sensations persisting, Rumm decided to go to a hospital.

On June 24, 2011, five days after she visited Middlesex Hospital in Middletown for what she thought would be a same-day visit and routine diagnosis of a treatable condition, Rumm was told she had multiple sclerosis.

Since then, she's given up her job and adjusted her once active lifestyle to modest activity; on "really bad days," she can't even get out of bed.

She's been on eight different medications and still is struggling to find a drug that combats her MS without side effects.

"A lot of things have been taken away from me, but losing my job, my career, was the most difficult part of my MS," said Rumm, who spent most of her 16 years teaching at Oakdale Elementary School. "There are other things I can't do, like I can't go skiing anymore, but the lowest point was when I lost my job."

She knows she's in a better position than some patients who have MS, and sees that firsthand when she walks into her doctor's appointments, while others come in wheelchairs, on stretchers or using walkers.

"I have tried unsuccessfully all of the MS drugs that are available and some made me so sick that my life was stopped," she said.

'A message of hope'

Today, Rumm is taking a medication typically used for cancer treatment, and she's had bad reactions to that, too.

Her goal, she said, is to keep her MS "even, with no new lesions."

"It's like a Russian roulette game," Rumm said, "If you don't take your medication, you could go into relapse, and if you relapse, you don't know where your lesions will form. And if they form on your optic nerve, you could go blind. Or on your spine, you could be paralyzed. You have no control where they will form, so you want to be on medication so you don't relapse."

She sees doctors in New York City who are working to find the best medication to control her MS, and back at home she's working to educate friends, neighbors and anyone else she's in contact with about MS.

Every year since 2012, she and her family — husband, Phil, and children Taylor and Noah — and other relatives and friends organize a team of walkers to participate in the region's annual MS walk.

"Heather Rumm is an inspiration to so many," said Lisa Gerrol, president of the Connecticut chapter of the MS Society. "While experiencing the difficult, unpredictable effects of multiple sclerosis, including pain, fatigue and no longer being able to work as a teacher, she shows a remarkable resilience and focus on a message of hope. She actively works to raise awareness about MS and raise funds to support research and programs to assist families affected by the disease. In fact, since her diagnosis in 2011, Heather, with the support of more than 100 friends and family, has raised over $50,000 for Walk MS, our annual spring fundraiser held across Connecticut."

Rumm would like to see more people participate in the walk on April 23, 2017, at Camp Harkness in Waterford. She will lead "Team Heather," and later this year information will be available at CTfightMS@org for people who want to donate or participate.

Rumm also wants the public to learn more about MS, and to be tolerant of others and not assume someone is healthy just because their affliction isn't obvious.

"People look at me and say, 'Well, you look so good,' and that's the worst thing ever, because I feel miserable," she said. "That's why they call it the invisible disease."

On a typical day, Rumm said she feels tingling pain from her toes to her neck and on difficult days, a "fatigue so great it's literally like dragging 1,000-pound weights across the room."

Some days, just the pressure of a watch on her wrist is too painful to bear, she said, and then there's the flushing on her face and chest, when her body feels like it's on fire.

"I'm on a daily basis of feeling pretty miserable," she said, but added, "I'm not giving in to the disease. I just need to set parameters.  ... I push myself every single day."

Does she feel sorry for herself?

"No, I don't," she said. "Because when I was diagnosed, I was like, 'OK, it could be worse.' .... But things are changing. Each year, it seems like one more piece of my life is taken away from me. But that's why we need to educate people and raise money for research. ... I never want to give up on that hope (of a cure and more and better medications). You have to have hope."

a.baldelli@theday.com