Dr. Stein is connected with Parkinson’s disease (PD) both professionally and personally. When Dr. Stein was in medical school, he did a rotation in neurology and that’s when he knew where he belonged. “What’s more fascinating than studying what is going on in the human brain?” While in medical school he also started to date his wife Lori. “She is gorgeous and I didn’t think I had a chance with her.” But he did. He also knew that this wife’s mother had been diagnosed with PD when Lori was just 15 years old. She had grown up with PD being part of her life.
After medical school Dr. Stein and his wife moved to Jacksonville, FL so he could set up practice at the Mayo Clinic. When his mother-in-law came to visit them, Dr. Stein noticed PD related problems she was having, like hallucinations. Dr. Stein would call MN to talk to Dr. Silverstein at the Parkinson’s Center in Methodist Hospital to discuss his mother-in-law’s medications. Dr. Stein and his wife moved back to MN in part to spend more time with Lori’s mother. He joined Dr. Silverstein and his partners and started staffing in the Parkinson’s clinic which was in the basement of Methodist hospital. They later moved the clinic in what became the Struther’s Parkinson Center.
“People with PD need to see a neurologist that specializes in PD. There has been so much change in the field since I started. We now know that Lewy Body is not as rare as what was assumed. Medication options continue to change. Everyone with PD is different. They have different symptoms and need a different combination of medications. There can be non-motor symptoms that need to be addressed such as mood, memory, constipation, sleep issues, etc. Each PD patient is a unique puzzle and I try to make all the pieces fit together as best I can.” Dr. Stein said.
“I also have an ongoing relationship with my patients. I see them every 6 months if not more often. I also build relationships with the caregiver and the family members. I look for burn out in the caregiver. It is not unusual for me to see a caregiver come in for the appointment with a smile on his or her face. But the moment I ask them how they are doing, tears may come to their eyes. An appointment can turn out to be half about the PD patient and half about the caregiver and family. This is very different than other specialties.”
One of the hardest parts of my job is dealing with the fact that there is no cure on the immediate horizon. We have a much better understanding of PD. But until we know what causes it, we cannot realistically hope to cure it. We manage the best we can and help people with PD have the best possible quality of life. “
Today Dr. Stein practices at the Minneapolis Clinic of Neurology. He is on the Medical Board of the National Parkinson Foundation MN with PD experts from all over MN. “The ability to interact with local peers in different care systems in our community benefits all of us.”
Story written by Susan Gangsei, author of The Light in the Middle of the Tunnel – Harrowing but Hopeful Stories of Parkinson’s Family Caregivers.
Living well with PD is much more than medication, and the person with PD and their care partner are the decision makers. We need to provide the right information at the right time based on what the patient and care partner tell us are their goals and what needs they have. Those things are different for everyone.
Ruth Hagestuen started preparing for her place in the Parkinson’s professional community when she was a nurse working overseas in Bangladesh and Madagascar. “I gained a different and more global perspective from my time there. I can see the value of different viewpoints and learned to think outside the box,” Ruth explained. This has served her well.
“My company is both a personal and professional thing for me,” said Marcia Cotter. “My father-in-law was diagnosed with Parkinson’s disease (PD) in 2004, and he passed away in 2013 at the age of 85. His journey with PD is the reason my company specializes in caring for people with this disease.”