Jeremy Bennett knows what it’s like to live with a chronic, incurable medical condition. Now 42, Jeremy was diagnosed with cerebral palsy when he was 2. CP is a group of disorders that affect a person’s ability to move and maintain balance and posture.
Throughout his life, Jeremy has developed strategies for managing his condition. That began at a young age.
As a child, Jeremy’s parents got him into a program through the Waisman Center at the University of Wisconsin-Madison. The center is dedicated to advancing knowledge about human development, developmental disabilities, and neurodegenerative diseases. Its offerings include providing services for individuals with developmental disabilities as well as their families.
“Early on, my parents — for better or for worse — treated me like a normal kid. And I just functioned to the best of my abilities as a normal kid,” Jeremy says.
Growing up on a horse farm in Platteville, Jeremy spent a lot of time in his youth riding horses and restoring old cars — a family passion. A love of working with computers led him to pursue a degree and career in information technology, and today he works as a health care IT specialist.
Struggling with Symptoms
Jeremy, who lives in Manawa with his wife and two teenage sons, says the discomfort and symptoms of his CP have worsened in recent years.
“As I’ve gotten older in the last few years, the pain has started to really pile up,” he says.
Jeremy had begun to experience severe pain and flailing in his right arm. This type of involuntary movement is not uncommon among people with CP.
“Think of holding a tense muscle for just that little bit too long, and then magnify that through the whole day,” Jeremy says. “You can’t untense that arm or that leg to make it stop aching. It builds up, and it just mentally drains you.”
Perhaps the most disruptive issue for Jeremy, though, was his difficulty sleeping. The pain kept him awake, and at its worst, he was up twice an hour. This began to affect every aspect of his life.
“My sleeping was so stilted and jarred, it was becoming difficult to focus,” he says. “I had zero energy waking up in the morning. It would take me an hour to get out of bed and become functional. It was driving my life, and I had to stop it.”
Jeremy recalls one moment that spurred him to seek care.
“We were getting ready to go down to my mom and dad’s for Christmas, and I woke up and I was just in a snarling bad mood,” he says. “My wife turned around in bed and looked at me and said, ‘You’re not going to go with us. You’re just going to stay here and recover.’ I realized then that I was letting this keep me from my happiness. I decided right there, I have to do something different.”
Connecting to Care
Jeremy knew exactly where to turn to get started: his primary care provider, Tina Bettin, a Nurse Practitioner with ThedaCare Physicians-Manawa.
Bettin treats Jeremy as well as his wife and two sons. That connection is important to Jeremy and his family.
“It’s extremely meaningful to have the clinic and Tina Bettin in our community,” he says. “Tina’s office is literally two blocks from my house. I can walk there to get what I need done and be home in 10 minutes. That presence is so important to this type of community.”
Bettin referred Jeremy to Dr. Mac Weninger, a Physical Medicine and Rehabilitation Physician with ThedaCare Orthopedic Care.
Dr. Weninger recommended a prescription medication, Botox injections, and suprascapular nerve blocks to treat Jeremy’s pain and symptoms.
“The Botox injections essentially reduce the muscle tightness so that he can improve his posture,” Dr. Weninger says.
Finding the right combination of treatments was important to Jeremy and his livelihood.
“I work with my mind,” he says. “If I have a medication that takes my mind from me or affects my ability to quickly work with issues, I can’t have that. With these treatments, I can function with my mind without my body pushing me to do other things anymore.”
Soon, Jeremy began to see positive changes. His muscles were more relaxed, his arm flailing subsided, his mood improved, and he could sleep more soundly.
Jeremy credits Dr. Weninger and this team for the compassionate care they provide.
“Dr. Weninger is very down to earth. I don’t feel like I’m just a number with him,” he says. “He humanized what I was feeling and my situation.”
CP is an irreversible condition. Jeremy says he’s realistic about what he can expect from the treatments he’s undergoing.
“I’m going to have to have it for the rest of my life, and I have to keep going on unless someone can think of something better,” he says. “But for now, it works. And I’ll do what works until it doesn’t work anymore.”
Dr. Weninger says this is key.
“What I hope for Jeremy is that we can keep his pain low so that he can do the things that he enjoys, that he can sleep well at night, and overall just have a better quality of life,” he says.
Jeremy says better symptom control has allowed him to take on more at home and in his family life. In the past, this had been difficult.
“My wife is a wonderful woman, and she bends over backward for me. She’s had to adjust around me a lot,” he says. “She just likes the fact that I can help more. Now I can give my wife some relaxation and time off without having to worry about doing other things.”
Feeling better also has helped Jeremy become more active. He’d like to lose weight to improve his health. With less pain, he’s gotten back to walking more, riding his bike, and doing activities with his sons.
Those joys in life are what keep Jeremy going. “I’m inspired to raise my kids, make my wife happy, and live my life,” he says. “That’s as much as there should be. Keep living my life.”