Neurologist and Medical Director of the Struthers Parkinson’s Center
I completed my training in Neurology and then did a fellowship in Clinical Genetics, because I was interested in genetic disorders of the nervous system. I became an expert in Huntington’s disease, a genetic movement disorder. When I came to Park Nicollet. I began to see patients with Parkinson’s disease, which is similar to Huntington’s disease in some ways, and the opposite of Huntington’s disease in other ways. Three years later, I was named as the Medical Director of the Struthers Parkinson’s Center! I have been involved for a number of years in research on the genetic aspects of Parkinson’s disease, first looking for genetic variants that might be more common in people with Parkinson’s disease, and later, focusing on patients with mutations in a gene called “parkin”.
I enjoy the combination of clinical work, education, and research, and have a high tolerance for involvement with problems that I can’t fix. I can truthfully tell my Parkinson’s patients that I am doing what I can to find better treatments for Parkinson’s disease (and invite them to join me in that search, by participating in research studies.) I enjoy having students, ranging from high school students up to medical fellows, learn about Parkinson’s disease by joining me in the clinic. And although people still die with Parkinson’s disease, and some die of complications of Parkinson’s disease, I take great joy in guiding them through the course of their disease, making sure that at each step along the way, they are functioning as well as possible, and that they understand what their disease is doing, how their medications work, what to do if they have a bad day, etc. It is very rewarding to improve people’s lives even in the midst of a challenging disease process.
People with Parkinson’s disease first need a timely diagnosis and an understanding of what their disease is, and what it isn’t. I spend a lot of time educating people about their medications, side effects, etc, and about the expected course of their disease. As caregivers become more involved, they need to understand more about the disease, and to be supported along the way. I try to stay connected to my patients even in the late stages of their disease, even if they are no longer able to be seen in the clinic. I am greatly helped in these efforts by being at the Struthers Parkinson’s Center, the regional NPF Center of Excellence, where we have a whole team of dedicated professionals to attend to different aspects of the disease, to help with education, support, research, respite, and therapy. As the director of the Center, I am permitted to take pride in all the activities that go on at the Center!
It frustrates all of the Parkinson’s experts in the community that we do not seem to be seeing anything close to all the people in the community who have Parkinson’s disease. If there are a million people in the US with Parkinson’s disease, then there should be on the order of 20,000 people in Minnesota with the disease, but if you add together ALL the patients seen by ALL the PD experts in the state, we don’t think it comes close to 20,000 people. So, we worry that people with Parkinson’s disease are missing out on the opportunity to have the best care, to participate in research studies to help bring us better treatments for Parkinson’s disease, to learn about exercise and healthy eating and other tips that will keep them healthy and maybe even slow the course of the disease or reduce symptoms, to access support groups and educational programs to help them understand and cope with their disease as well as possible.
I am particularly inspired by two kinds of families. There are the patients who attack their disease head-on, who learn about it, ask questions, challenge me, try new things, participate in research, begin an exercise program, quit smoking, inspire the people around them, and end up healthier as a result. And with them come families who help their loved one to attack their disease, by supporting them in many ways, encouraging them on the bad days, helping out with the little things, and so on. And the other sweetly inspiring people are the elderly couples who are so understanding and supportive of each other—“he can’t see well anymore because of his vision trouble, and I can’t walk well because of my Parkinson’s, so we have to walk together…” To see that kind of love and understanding and mutual support makes me believe that there is still hope for the world!
As I mentioned above, I am terribly fortunate to be able to “do Parkinson’s right”, to have the tremendously experienced team of health professionals that I work with at Struthers. Writing prescriptions and watching people tap their fingers and toes (perhaps a slight oversimplification of what the doctor does) is important, but there is so much more to optimizing health in the face of Parkinson’s disease than just taking pills. Education, support, a person to ask if there is a problem or crisis, an exercise program, home safety measures, voice exercises, participating in the National PD Registry, learning to relax through music, learning to get un-frozen through music, learning how to do Nordic walking, meeting other people with PD who like to bicycle, golf, sail, run, play music, write books, etc etc etc.—all these things can help a person to not just live with PARKINSON’S, or even, to live with Parkinson’s, but to LIVE with Parkinson’s, to fully live their lives despite the disease!
“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.
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.
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.