Imagine waking up one morning unable to feel anything from the waist down.
That’s what happened to Pegi Bricker of Seymour 19 years ago, unaware of the battle she was about to face with multiple sclerosis, also known as MS.
“I woke up one morning and I couldn’t feel anything from my navel down, so I went to Dr. Pam Snook-Tidd, and she did all kinds of tests,” Bricker, 59, said. “They found a lesion on my brain and thought I’d had a stroke.”
Bricker then went to see Dr. Levi Nehrt at Klaes Chiropractic Clinic, and after he examined her, he suggested she see a neurologist because he suspected multiple sclerosis. She had no idea what that was and thought it was like muscular dystrophy.
She said she is so thankful for Nehrt because he knew exactly what was happening and he saved her because sometimes, people go years without a definitive diagnosis.
“We then went to Dr. (Donald) Harris in Columbus because there weren’t any neurologists in Seymour at that time,” she said. “He’s the one that did the spinal tap, and he’s the one that started me on medicine and confirmed the diagnosis.”
Bricker said prior to that morning when she woke up with a loss of feeling, she had been helping at a booth set up by her church, Cornerstone Community Church in Seymour, at the Jackson County Fair.
It was stressful and very hot, her mother had recently passed away and it was just a horrible time for her, she said.
“Dr. Harris said it was a snowball effect and had probably been there for years, and with the heat and stress and all the busyness with everything I was doing, my body just said, ‘That’s it, I’m done,’ and so I couldn’t walk without a walker or something to hold onto, and it was awful,” she said.
Bricker said MS mimics many different diseases and is individual to the patient, so no two people are exactly the same, sort of like a snowflake.
She was confirmed in all four ways: Clinical, her history, protein in her spinal fluid and lesions. She had a T2 to T8 lesion on her spinal cord, which Harris said was unusual to see.
“I call MS ‘multiple surprises,’ as people of all ages with MS never know if they will be able to walk or have vision when they wake up on any given day,” she said.
Bricker asked Harris what she could do that might help, like eat different, because she knew nothing about it and no one in her family knew much about it, either.
“He told me there’s nothing I did that caused me to have MS and there’s nothing I could do to get rid of it. It’s chronic and permanent. There’s no cure,” she said. “They’re working on a cure, though. He said I wouldn’t die from MS, but I would die with MS, and it will cause things to happen that could kill me.”
Bricker said she was very sick for a long time.
“I couldn’t get out of bed, I couldn’t walk, so I’d just lay on the couch and cry because I had been really active,” Bricker said. “I had homeschooled my kids and had been on the go all of the time, was very involved in our church, in ministries and councils and all kinds of things.”
She said the top three things a person with MS experiences are heat intolerance, fatigue and depression.
“I’d get so depressed in the summer because I couldn’t get outside due to the heat,” she said. “I struggled with depression and suicidal thoughts for many, many years and went to a psychologist at Schneck, and since then, I’ve got it all figured out.”
Bricker also went through a period of frequent falling. She has fallen twice this year so far already but has taught herself how to relax as she falls to make her injuries less severe.
She and her husband, Clarence Bricker, are members at Cornerstone and have been attending for at least 25 years, and the church has been very helpful.
“I recently had spinal surgery, and I couldn’t even walk or take care of myself and had to buy hospital beds, lift chairs and other equipment and everything. It was horrible, but my church helped,” she said. “Clarence took two weeks off, but he couldn’t be off forever, so church members came and brought food, and they walked with me because I couldn’t walk alone.”
She said the church got in touch with contractors Rob and Theresa Schwartz. They donated labor, and the church paid for materials.
“They put a really nice ramp on the front of our house that I could walk up and down and use my wheelchair,” she said. “I just don’t know what we’d do without our church friends. I’m sure it’s God who led us to Seymour and then to Cornerstone.”
Bricker now sees Dr. David Mattson, an MS specialist at Indiana University Health in Indianapolis, who is considered to be a leading voice in clinical trial research.
“I started in some clinical trials with him, but one of the trials I couldn’t finish because my heart rate was so low,” she said. “I was in Schneck Medical Center and Columbus Regional Hospital every other month getting high doses of steroids, but nothing would stop this mess. That was approximately 18 years ago.”
Bricker said the steroids didn’t cause problems then, but she now has very fragile bones due to them.
“I was walking recently and two bones just snapped in my foot, and the next week, my heel shattered,” she said. “I’ve had a knee replacement, broken legs and now, my teeth are breaking.”
“I also seek treatment and advice from Dr. Matt Meyer, Dr. Thomas Smith, Dr. Pam Snook-Tidd and Nurse Practitioner Darlene Kilburn from the Schneck Pain Center along with their PT and OT departments, all many times each year to live, juggling the multiple health problems caused by this neurological monster,” she said.
Bricker’s biggest support system is her family.
“I’m originally from Greencastle and went to nursing school in Terre Haute,” she said. “Clarence and I were pen pals while he was in the Army.”
She said he came home from basic training, they fell in love and got married and then she got pregnant and they moved to Germany.
“After Clarence got out of the Army, he went to Vincennes University and got his degree in printing,” she said. “He then got hired at R.R. Donnelley, which brought us to Seymour around 28 years ago.”
The Brickers have two grown children, Joe and Karen.
Bricker led a busy life, and after she and her husband had their two children, she quit nursing so she could be a stay-at-home mom.
“My son, Joe, lives across the street with his wife, Toni, so they are close by if I need them. My daughter, Karen, lives in Scipio but would help if we needed her, too,” she said.
Bricker and her husband are currently working on getting a pedestrian crossing at the intersection of Dunbar Drive and Burkart Boulevard because it is extremely difficult, especially with a disability, to cross anywhere along Burkart to get to the pedestrian trail, she said.
Bricker’s husband does a lot for her and takes care of her, but he said it’s not easy.
“Most of our vacation time is spent going to see specialists and doctors,” he said. “Her current daily medication is very costly at over $7,000 for a 30-day supply, and our deductible is $6,900 per person.”
Clarence said they have to apply for medical payment assistance from the drug company. When their insurance rolls over in January, they have to max out their credit cards for January’s medication.
“Then the drug company reimburses that for us, but CVS refuses to accept assistance payment directly from the drug company, so I have to pay out of pocket with no payment plans allowed. Then we get reimbursed,” he said.
Clarence said sometimes, it feels like nobody cares, so a support group might be helpful.
March is Multiple Sclerosis Awareness Month, but the Brickers aren’t aware of any local support group for MS patients and their families.
Pegi said she would love to work with another person with MS to get a group going not only for support but to have gentle fun and get-togethers. It wouldn’t have to be just for those with MS, but with other neurological problems, too, she said.
People don’t die from MS, but they do die with MS, and often before that, many lose heart to simply sit up and keep breathing, she said.
“I’ve had it for such a long time now that if I could talk to someone who has been diagnosed within the last year, I’d tell them ‘Read everything you can about it, but don’t believe everything you read,'” Bricker said.
She also would tell them there are cutting-edge medicines coming out now that can maybe reverse what has happened.
“So just take a breath,” she said. “It’s going to be OK, but it’s a long marathon.”