This Nurse Navigator Has ‘All the Time in the World’ for Patients
Nurse Navigator Jennifer Ross, RN, in the Acuity-Adjustable Unit on the neuro floor at the UC Medical Center. Both Jenny and the unit are part of the hospital’s focus on patient- and family-centered care. Photo by Cindy Starr / Mayfield Clinic. It’s OK if you don’t know where to go. Really, it is. It’s OK if you can’t recall what they told you about your incision when you were leaving the hospital. And it’s OK if you don’t really remember whether you were supposed to call for a follow-up appointment or the doctor’s office was going to call you. You were taking medicine and had just had surgery, and looking back, everything that was happening then does seem a little hazy. Jennifer Ross, RN, understands completely, and that’s why she is here to help you, your family and everyone else who undergoes surgery at the UC Neuroscience Institute at University of Cincinnati Medical Center. Mrs. Ross, who prefers to be called Jenny, is a Nurse Navigator for UCNI, one of four institutes of the UC College of Medicine and UC Health. Her job is to help patients navigate their treatment path before their admission to the UC Medical Center, during their hospitalization, and in some cases after they go home. Whether she is answering questions or helping patients and families navigate logistics, she is only too happy to be of service. “I tell patients and families that I have all the time in the world,” she says. Funding for Jenny’s position comes from UC Health and from a generous donation from the Harold C. Schott Foundation. On a typical day, Jenny works with half a dozen surgical patients and their families in the hospital, while coordinating with many more patients who are about to have surgery or have been discharged. During a recent week, she followed more than 20 patients who had been treated for stroke or other neurovascular disorders. In addition, she coordinates with UCNI’s growing volunteer corps, which provides hospital amenities ranging from crossword puzzles to friendly conversation, and she works with the UC Brain Tumor Center’s Patient Advocacy Committee, which oversees Katarina’s Care Bags and the Allies for Hope and Healing mentoring program. Patients who are scheduled for surgery typically come in contact with Jenny the day before, when she gives them a call to ask whether they have any questions or concerns and to make sure they know when they are supposed to arrive and where they are supposed to go. She also confirms that they have a realistic expectation of how long they will be in the hospital. “They may think they’re going to be in the hospital a day, when I know they will be discharged in three,” Jenny says. In some instances, Jenny will meet a patient well before the surgery. If a doctor summons her to the patient’s pre-surgery office visit, she will head over to the UC Physicians Office Building, meet the patient there, and then give the patient a tour of the hospital unit where the patient will recover following surgery. “Sometimes patients from out of town are a bit nervous about being in a big hospital,” she notes. “Seeing the actual unit, with our caring staff at work, can be reassuring.” On the day of surgery, Jenny takes on extra-special duties. While the patient is in the operating room, she goes to the waiting area and meets the patient’s family. She does “a little hand-holding and reassuring,” while updating families about what will likely happen the rest of the day. She tells them how long their loved one will be in the PACU (post-anesthesia care unit) after the surgery is over, what area of the fourth floor the patient will go to next, and how the family is to get there. Jenny also assists certain patients with their transition to after-care. If the patient has suffered a stroke or intracranial hemorrhage, or if the patient is considered at risk of not getting sufficient support at home, she follows up with the patient a week after discharge to ensure that the patient is getting the assistance he or she needs from family members. “There can be a lot of confusion when patients go home,” Jenny says. “They get a lot of information in the hospital, but then they have to go home and digest it. When I make that follow-up call, they start to think of those last-minute questions. They may have a prescription for physical therapy and occupational therapy, and they have no idea what to do with it. I call the patients and touch base to make sure they have a primary care physician and to make sure they are taking their medications and getting the follow-up laboratory tests they need.” Jenny calls those patients again about three months later, making her usual checks but also looking for additional issues. If she notes anything out of the ordinary, she refers the patient to his or her physician. When the position of nurse navigator for patients with stroke and brain tumors became available at the UC Neuroscience Institute, Jenny knew the job was perfect for her. “Talking to patients and helping them understand their care was my favorite part of being a staff nurse,” she says. “This is what I was meant to do. I can talk to anybody.” Jenny knows she is having an impact every time she hears the words, “I’m so glad you checked on me.” She gives patients her phone number and encourages them to call if they have questions or problems. “I’m here to help find the answer for them,” she says. “I’m a link in the treatment chain that patients really need.” — Cindy Starr
For Patients with Brain Tumors, Katarina’s Care Bags Add a Touch of Healing
Katarina Warnick, home for Thanksgiving, assembles special bags that will be given to patients at the UC Brain Tumor Center. Photos by Cindy Starr / Mayfield Clinic. Katarina Warnick was in high school when she realized that she wanted to do something to help the patients her father treated at the Brain Tumor Center at the University of Cincinnati Neuroscience Institute, one of four institutes at the UC College of Medicine and UC Health. “It started a long time ago as an idea,” says Katarina, now a freshman at Colorado State University. “I grew up knowing my dad worked with people who suffered with brain tumors and were hospitalized. I know that doctors and nurses do an amazing job of providing comfort to the patients, but I saw an opportunity to provide comfort on a level different from medicine.” Dr. Ronald Warnick with his daughter, Katarina Katarina’s father, Ronald Warnick, MD, Medical Director of the UC Brain Tumor Center, connected her with the center’s Patient Advocacy Committee, and in the summer of 2011 the concept of “Katarina’s Care Bags” was born. Katarina’s vision was to supply patients with something that they couldn’t find in the gift shop. The committee, headed by Amy Diamond, provided support and guidance for the project. Katarina, who is majoring in art history and minoring in conservation biology, selected the contents of the bags based on her own experience and an artistic eye, mixing blues, greens and pale yellows with aromatherapy. The bag’s contents ranged from an organic stress-soothing balm with tangerine and rosemary to a book of universal wisdom, with sayings such as, “Be an ally to those who are suffering.” Bulk purchases for the bags, which numbered about 150, caught the eye of more than one vendor. When Katarina stood at the checkout at Bed, Bath & Beyond with 30 sleeping masks, the clerk asked, “Are you thinking of hibernating?” A small business in New Hampshire known as Badger called Dr. Warnick, whose credit card had been used, to ask whether the order of 100 canisters of Stress Soother was a mistake. “Are you sure you didn’t mean 10?” the customer service representative asked. Burt’s Bees, touched by the concept of Katarina’s Care Bags, offered to supply lip balm at no charge. The bags were distributed by nurses, by Dr. Warnick and, on several occasions, by Katarina herself. “I gave out five or six bags on Christmas Eve,” Katarina recalls. “It was great seeing the reaction of the patients. They felt that someone other than the doctors and nurses and their family was thinking of them, especially since they weren’t able to spend Christmas at home with their families.” Dr. Warnick is understandably proud of his daughter for her desire to help others. “She really wanted to help brain tumor patients by providing a soothing care package that would help them through the hospitalization,” he says. “I’ve been with her several times when she has handed them out, and I’ve handed out some for her. Usually it brings tears to the eyes of the patient. And I have to admit that it brings tears to my eyes, too. In fact I’m not sure who is crying more, the patient or the proud dad.” “The patients truly appreciate the thoughtfulness and the time and effort put into these special bags,” says Dale Green, RN, a neuro nurse specialist with the UC Brain Tumor Center. “They are grateful for the comforting gesture as they undergo what most perceive to be a daunting healthcare experience.” “The Patient Advocacy Committee is very grateful for Katarina’s idea to create the bags and for the effort she put forth to make them something truly special for the patients,” adds Ms. Diamond. “The patients’ response has been very positive, and they are deeply appreciative of this thoughtful touch!” With Katarina away at college, the torch is being passed. Katarina’s Care Bags will continue in a new iteration and in new UC Health colors, beginning in January 2013. The new bags will be funded by the Brain Tumor Patient Care Fund. Donations to support the purchase of new bags are welcomed and can be made online, by check (made out to the Brain Tumor Patient Care Fund and mailed to 3200 Burnet Avenue Cincinnati, OH 45229), or by contacting Liz Keating at (513) 585-7777 or [email protected]. — Cindy Starr
Study Participant Strides Ahead with His Doctors, His Research Team & the Best Therapy (Dog) Ever
Bob Kehm, center, with two of his doctors, neurosurgeon Norberto Andaluz, MD, left, and neuro-oncologist Richard Curry, III, MD, right, at the kickoff for UC Health Research Week. Photo by Cindy Starr / Mayfield Clinic. Bob Kehm helped kick off UC Health Research Week 2012 on Tuesday at University Hospital with a story that merged coincidence with collaboration and hope. The coincidence involved the 62-year-old West Chester man’s best buddy, “Jake,” a 165-pound Newfoundland and therapy dog that Mr. Kehm had trained for duty. The collaboration involved Mr. Kehm’s multidisciplinary team of physicians at the Brain Tumor Center at the UC Neuroscience Institute, one of four institutes of the UC College of Medicine and UC Health. And the hope comes in the form of a novel brain cancer vaccine study for which Mr. Kehm qualified. Mr. Kehm, a trim, athletic man who last month zipped through the Walk Ahead for a Brain Tumor Cure 5k in 23 minutes and 13 seconds, began training with Jake two years ago, and the pair soon qualified as a therapy team. Bob Kehm and “Jake,” the therapy dog he helped train “About half-way through our experience, eight or nine months ago, we qualified to come to University Hospital,” Mr. Kehm said. “We’d been here three or four times as a therapy team when I myself had to come here as a patient, with a glioblastoma multiforme — it’s called a stage 4 brain cancer in my language. And by a shared coincidence, this is the only hospital where Jake and I go into the neurosurgery area, because Jake’s a big enough dog that people who aren’t real mobile can just reach their arm out to pet him. And very coincidentally, I ended up in the neurosurgery area myself.” Norberto Andaluz, MD, a neurosurgeon with the UC Neuroscience Institute and Mayfield Clinic, removed as much of the glioblastoma as possible. Unlike solid tumors that have clear borders, the glioblastoma tumor is diffuse and infiltrative and therefore difficult to remove. Following surgery, Mr. Kehm underwent radiation treatment under the guidance of the UC Brain Tumor Center’s Luke Pater, MD, at the Precision Radiotherapy Center in West Chester, Ohio. And almost simultaneously, Mr. Kehm said, he was enrolled in a research study at the UC Brain Tumor Center under the care of Richard Curry III, MD, a medical neuro-oncologist. As a study participant, Mr. Kehm is helping scientists investigate the potential benefits of a vaccine designed to help the immune system inhibit the growth of cancer cells that contain the EGFRvIII protein. “In addition to surgery and radiation, they poke me in the leg six times once a month for the experimental vaccine,” he said. “I’m not sure what’s helping me, but something’s doing it and I give credit to the docs and everyone else. This vaccine may have made an impact on how well I’m doing right now.” Because the vaccine study is “blinded,” however, Mr. Kehm does not know whether he is receiving the actual vaccine or a placebo. Serving as master of ceremonies for the Research Week kickoff, Stephen Strakowski, MD, Vice President of Research for UC Health and the Dr. Stanley and Mickey Kaplan Professor and Chair of the Department of Psychiatry and Behavioral Neuroscience, praised Mr. Kehm and other study participants as the “real heroes” of clinical research. “We work with them at a time that is the most difficult in their lives,” Dr. Strakowski said. “They realize that even if this research doesn’t help them, it hopefully will help the next person. It’s just not possible to say enough about the courage of our patients who participate in research and how thankful we are that they do. Because without them, we couldn’t make the advances in healthcare that really change how people get better.” Mr. Kehm praised all who have cared for him within the UC Brain Tumor Center and UC Health. “Considering it’s cancer, it’s been a very good experience,” he said. “I almost have no symptoms, although I do have some memory loss.” And, he added, he was “not happy” with his 7:29 pace in the Walk Ahead 5k. Still, it was good enough to beat his neuro-oncologist, Dr. Curry, by 13 seconds. UC Health Research Week, “Collaborate to Innovate,” concludes today. –Cindy Starr
As HPV-Related Throat Cancer Rises, Dr. Wilson Calls on New Robotic Skills
Keith Wilson, MD, Asso. Professor of Otolaryngology-Head & Neck Surgery at UC and Chief of Staff at UC Health University Hospital. Photo by Cindy Starr / Mayfield Clinic. For Keith Wilson, MD, watching the emergence throat cancers related to the human papilloma virus (HPV) has been almost like watching the emergence of a new disease. In the past, oropharyngeal cancers (of the tonsils and base of tongue) were typically related to smoking and/or excessive alcohol consumption. Today they are frequently caused by HPV, and they are showing up in younger people. Fortunately for Dr. Wilson and his patients, the cancers are highly treatable, and a new robot is giving surgeons at the UC Neuroscience Institute more dexterity in the confined spaces of the mouth and throat than they have ever had before. “Oropharyngeal cancers now have reached an epidemic proportion, and the main culprit, the main reason for the epidemic, is human papilloma virus,” said Dr. Wilson, Director of the Head & Neck Division in UC’s Department of Otolaryngology and a member of the UC Brain Tumor Center at the UC Neuroscience Institute, one of four institutes of the UC College of Medicine and UC Health. “We have an influx of patients who smoked only briefly or didn’t smoke at all, and now they have cancers of the base of the tongue and the tonsils. Men outnumber females in the distribution, but we’re seeing a younger distribution, a younger population. Where the average smoker-drinker patient we saw was in their 50’s, the average patients with HPV-related oropharyngeal cancers are in their 40’s.” Dr. Wilson said that individuals newly diagnosed were probably exposed to HPV 20 to 30 years earlier, when they were in their early 20s or late teens. He attributes the rise to changes in sexual practices. The rise is occurring in the United States and Europe, for example, but not in India or the Middle East. The majority of people exposed to HPV do not go on to develop tonsil or base-of-tongue cancer, Dr. Wilson said. “Much like women and cervical cancer, there’s a significant percentage who will be exposed and may have limited infection and then clear it.” In a minority of cases, the tumors will metastasize and behave aggressively. Dr. Wilson is seeing three to four new patients a month with the condition, while his partners, Keith Casper, MD, and Yash Patil, MD, are treating a similar number of patients. The majority of patients with HPV-related cancers undergo radiotherapy (radiation treatment) and chemotherapy because their lymph nodes are already involved. The most common symptom of cancer of the throat is not a sore throat but rather an enlarged lymph node, the result of metastasis from the throat. Those who do not have lymph node involvement, or who have only one affected lymph node, will undergo robotic surgery and, occasionally, radiotherapy. “The patients whose cancer is discovered in its earlier stages are the ones we tend to treat with the robot,” Dr. Wilson said. “If we can get clear margins on the primary cancers, we can often save the patients any additional treatment.” The robot, a Da Vinci Surgical System manufactured by Intuitive Medical, provides 3-dimensional viewing that is superior to what surgeons normally see through a microscope or the naked eye, Dr. Wilson said, and it facilitates surgical maneuvering in the back of the mouth and the throat. “It’s hard to get your hands in there to be able to work. The robot has wristed arms, which move in the same way your wrists move, and they’re holding smaller instruments. So your ability to cut, your ability to sew, your ability to dissect is so much better working with the robot in small places. It’s the reason why the colorectal surgeons, the urologists, and the gynecologists, who are all working down in the pelvis, are finding the robot to have such a tremendous advantage for them as well. With this wristed instrumentation you can do things as if you’re working in a wide open space.” Dr. Wilson, who did his training with the robot in March 2012, is using it not only to remove cancers of the tonsils and base-of-tongue, but also to treat some lesions on the voice box. Robots are not yet being used to treat vocal cords. Whether HPV-related cancers are treated surgically or with radiation and chemotherapy, the outcomes are mostly positive. “If you are a non-smoker and don’t have a significant tobacco history and you have an HPV-related cancer, your cure rates are in excess of 90 percent, probably on the order of 93 percent, which for cancer is outstanding,” Dr. Wilson said. “And even with advanced-stage cancer, you have a 90-percent-plus chance of being cured. If you smoke and have an HPV-related cancer, the cure rates drop down into the 71-percent range.” The big surprise is that smokers with oropharyngeal cancer and HPV have a better prognosis than smokers with oropharyngeal cancer who do not have HPV. The cure rates for smokers with throat cancer who do not have HPV hover around 50 percent. Dr. Wilson describes the phenomenon as “very bizarre,” but very interesting. “What is it about this virus that seems to render the tumor more susceptible to treatment or makes it less hearty?” Dr. Wilson asked. “That’s the question that a lot of researchers are looking at. I don’t know the answer myself, but there are some really smart people looking into it.” — Cindy Starr Related: Head and Neck Surgeons See Rise in Oropharyngeal Cancers Caused by HPV >>
2nd Annual Rick King Memorial Serves Up Fitting Tribute
From left: Colleen King and husband Keith King; Kristen King and husband Tony King; Paulette King; and Jessica and Craig Rodenberg. Photo by Cindy Starr / Mayfield Clinic. The 2nd Annual Rick King Memorial Fundraiser Saturday night in Fairfield fulfilled its goal: it served as a heart-warming remembrance of a cherished husband, father and grandfather, and it raised $1,706 for research at the Brain Tumor Center at the UC Neuroscience Institute, one of four institutes of the UC College of Medicine and UC Health. Rick King passed away in June at age 56 after a brave battle against glioblastoma multiforme, an aggressive form of brain cancer. The memorial fundraiser was held at J. Gumbo’s, in Fairfield, which is managed by Rick King’s son Tony. The event served up an all-you-can-eat buffet that included a New Orleans-style shrimp boil and an enticing table auction with baskets donated by local businesses. Paulette King and her late husband, Rick. Photo by Tony King. “My family and I were very pleased with the turnout and how smoothly everything went,” said Paulette King, who had been married to Rick for 36 years. “I think it helps all of us feel that we are helping, in our own little way, to fight this deadly disease. Of course, Rick’s courageous fight is our motivation and inspiration to do our little share. Maybe it will also help us through our grieving process. There isn’t a day that goes by that we do not talk about him and how very much he is missed.” The King Team will be walking in Rick King’s memory on Oct. 28 in the Walk Ahead for a Brian Tumor Cure. The team’s co-captains are Rick’s two other adult children: son Keith and daughter Jessica Rodenberg. All are invited to join or support their team. – Cindy Starr
Former Executive Moves ‘Pedal for Parkinson’s’ Into High Gear
Ben Contra, diagnosed with Parkinson’s disease at age 46, is working hard to raise money for research at the Gardner Center. Photo by Cindy Starr / Mayfield Clinic. In the summer of 2011, Ben Contra went public. At age 49, after hiding a major health condition for two and a half years from everyone except his doctor and his wife, he came out with the secret that he had Parkinson’s disease. Over the course of a weekend, he told his children, his mother, his mother-in-law and the Chairman of the Board of the company that he had so ably served and nurtured for the previous nine years. As Executive Vice President, he also told the chairman that he would be retiring from the company and that plans for succession should begin. Mr. Contra then went to work on the business of living with Parkinson’s. Already a fitness enthusiast who exercised every day of the week, he ratcheted up the quality of his diet and developed a focused workout routine that included spinning at the Cincinnati Sports Club. “Ironically, my spinning instructor asked whether I could help him with a Parkinson’s event,” Mr. Contra recalls. “He had no idea I had Parkinson’s.” The event raised an impressive $10,000. This year, channeling his inner Type A, Mr. Contra is thinking bigger. As a member of the Community Advisory Board for the James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders, he is hoping the Pedal for Parkinson’s on Feb. 9, 2013 brings in even more money for research. “We’ve made it much larger,” Mr. Contra says. “We’re trying to get four times as much participation.” The fundraiser, which Mr. Contra is chairing, benefits the Gardner Center at the UC Neuroscience Institute, one of four institutes of the UC College of Medicine and UC Health. The event features spinning classes at the Cincinnati Sports Club, with heavy appetizers by La Petite Pierre and a party with Pete Wimberg’s Band. Pedal for Parkinson’s is another in a growing series of events that benefit the Gardner Center and that embody the Gardner Center’s theme, “Move to Live, Live to Move.” Other activity-oriented events feature cycling (Sunflower Revolution) and golfing (the Jerry Wuest-Pete Hershberger Golf Classic and Putting for Parkinson’s). Mr. Contra’s story of Parkinson’s, a progressive neurodegenerative condition, is at once typical and very much his own. Looking back, he sees no hereditary connection but does note two potential environmental risk factors: spraying trees on his family’s property with a potent pesticide and participating in boxing and other contact sports as a youth. “I don’t think I ever had a concussion per se, but I did have some good hits,” he says. His first symptoms emerged as restless leg syndrome. Mr. Contra had never been one to sleep much, getting by on 4 to 5 hours a night, and Parkinson’s would reduce that even more. “With Parkinson’s disease you get up at 2 a.m. and organize your closet or paint the garage,” he says. “You do a lot of those things. A partner or spouse of someone with Parkinson’s has to struggle with this. What is he doing? Why is he up at 3 a.m. washing cars? That’s one of those traits that goes along with the disease. If I sleep 3 to 4 hours, that’s a good night. I don’t wake up in pain, but I wake up.” Additional symptoms – stiffness and tremors – eventually led to a diagnosis of early-onset Parkinson’s disease. Only 46, Mr. Contra was among the 10 to 20 percent of people with Parkinson’s who fall into the category of early-onset. Mr. Contra kept the news to himself, not wanting to show any signs of weakness. Eventually, however, he realized he could not remain silent. He had bothersome tremors in the morning, couldn’t type quickly, and had to ask his assistant to take dictation. What he normally accomplished in a day was taking him a day and a half. With Mr. Contra’s blessing, his company, Trivantis, issued a news release about his retirement. “My personal struggle with Parkinson’s disease has just begun, but I know the support of those around me will help me persevere,” he said in the release. “I know I am not alone and will make it my mission to raise awareness and help find a cure for the millions that are affected by this disease.” He added that support from family and community enabled him to “weather the initial shock and denial of his condition.” Still, the transition from successful executive to Parkinson’s advocate has not been easy. “You have retirement and your typical mid-life crisis, and then you have Parkinson’s on top of it,” he says. “You have to deal with those issues at the same time. It was difficult. A year and a half after retirement, and I’m still searching. Was it like being in mourning? Oh yeah. Yeah. My passion was my work. I had to basically give that up.” Mr. Contra has good days and bad, with moods that ebb and flow. “Sometimes you fight depression. And people with early-onset Parkinson’s tend to be affected the most of any Parkinson’s group with depression. You think of people who are using canes and can’t get around. And when you’re young and you start developing those symptoms, you think, ‘oh my gosh, my life is coming to an end.’ “Knowing that, there’s a message to try to do as much as you can to fight off the disease by being strong mentally, physically and spiritually. Exercise is so important. You have to make sure you get up and get moving. Eating a good diet is critical, as is taking your medication as prescribed.” He adds that having the Gardner Center “In our own backyard” provides access to informed opinions and care, educational symposia and clinical trials. “The folks around me have state-of-the-art knowledge of where we are with Parkinson’s today. Having a community like the Gardner Center,
From the Trenches of Huntington’s Disease, Charles Sabine Delivers Message of Hope
Meeting his family history head-on, Charles Sabine, center, participates in a clinical trial to shed light on Huntington’s disease. Mr. Sabine’s father, at left, suffered from the disease, as does Mr. Sabine’s older brother, shown with Charles at right. Photos courtesy of Charles Sabine. In 2005 the NBC war correspondent Charles Sabine made the life-altering decision to face up to his family history of Huntington’s disease and undergo genetic testing. The odds, he knew, were 50-50 that he, too, had the gene and would eventually develop the progressive neurological condition. When the neurologist gave Mr. Sabine the chilling results, he said there was “nothing” Mr. Sabine could do. But Mr. Sabine has been proving him wrong ever since. “The reality is that there is everything I can do,” he said at the University of Cincinnati last week. “The problem is finding the time to do it all.” In a presentation that soared from heartbreak to hope, Mr. Sabine put a face on Huntington’s disease that will not likely be forgotten by those in attendance at the Medical Sciences Building’s Kresge Auditorium. Mr. Sabine, who has emerged as the global spokesman for Huntington’s disease, challenged his listeners to banish the word “incurable” from their vocabularies when speaking or thinking about disease in general and Huntington’s in particular. It is within the reach of scientists, he said, “to change what is perceived as unchangeable, because the human spirit is capable of anything.” Watch a podcast of Charles Sabine’s Sept. 27, 2012 lecture >> Mr. Sabine’s visit was initiated by Peter Stambrook, PhD, Professor in the Department of Molecular Genetics, and sponsored by the Fellows of the Graduate School and Center for Clinical and Translational Science and Training (CCTST). His presentation held special resonance for patients, clinicians and researchers affiliated with the James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders at the UC Neuroscience Institute, one of four institutes of the UC College of Medicine and UC Health. Peter Stambrook, PhD, left, and Charles Sabine Huntington’s disease affects an estimated three to seven of every 100,000 people of European ancestry, according to the National Institutes of Health. Its unforgiving genetic component means that a child of a parent with Huntington’s has a 50 percent chance of inheriting the gene and, ultimately, the disease. Mr. Sabine (pronounced SAB-BINE), 52, who lives in England, survived dozens of missions as an award-winning correspondent in war-torn nations including Bosnia and Iraq and once had an AK-45 pointed at his heart and a grenade held to his head. “My profession exposed me to an unnaturally large number of dead and injured people,” he reflected. “More than a dozen wars, five revolutions, four earthquakes, and more suicide bombings than I could count left me with more visions of death than anyone would wish for.” His journalistic experience prepared him for Huntington’s by illuminating not only the fragility and cruelty of life but also mankind’s potential for hope and heroism. Mr. Sabine was in the heart of his career in 1994 when he received the news that his father had a disease that he, Charles, had never heard of. “From that moment, every single action, performed by every one of us in my family, would be colored by that news,” he said. “The words that seemed most often applied to it were incurable, untreatable.” Years later, Mr. Sabine’s brother, an Oxford-trained lawyer, developed the disease. Whereas his brother once practiced at a prestigious law firm, Mr. Sabine said, “now, before meeting his neurologist, he practices walking in a straight line, because he knows she will ask him to do it, and it is very difficult for him.” Although Charles Sabine thus far has shown no symptoms of the disease, a part of him lives in fear. “Every time I take the dogs for a walk I wonder if this will be the time I realize my coordination has started to fade,” he said. But self-knowledge has also meant power. While approximately 90 percent of Americans at risk of Huntington’s choose not to undergo testing, Mr. Sabine’s awareness has spurred a global call to action in which he speaks out against the prejudice and stigma surrounding HD; helps explain scientific research to lay audiences; rallies Huntington’s families to engage in clinical trials and to raise their voice in support of research; and urges doctors and scientists to adopt the language and attitude of hope and to eliminate a word — incurable – that he calls “utterly irrelevant, serving no purpose other than to induce despair.” Mr. Sabine himself is among 200 volunteers worldwide who are participating in “Track HD” an ongoing international study led by University College London that aims to establish the best possible outcome measures for clinical trials in Huntington’s. Mr. Sabine also assisted with the drafting of the 2008 Genetic Information Non-Discrimination Act (GINA), which protects the rights of Americans with genetic predispositions from discrimination by employers or insurance agencies. In short, hope is the message that Mr. Sabine strives to convey. He pointed to the dramatic strides in the management of HIV/AIDS, and he offered an anecdote from his reporting days in the Middle East. “In 1991, after the Gulf War that did not remove Saddam, I went to the Iranian Border with Iraq after rumors that Kurdish refugees were spilling across it,” Mr. Sabine said. “What we found was a sea of humanity pouring over the mountains: a million people, mostly women and children, running from Saddam’s chemical attacks in the north of Iraq. “It was winter, bitterly cold. And the sights would never have been believed had there not been a cameraman with me to record them. But the image imprinted in my mind until the day I die was one particular girl of about 12. She was clambering over the rocks, focused on survival, her face dripping with freezing mud. On her back was her younger sister, two or three years old, unconscious and barely alive. She
UC Health Team Haiti Gives a Hand Up to Haitian Doctor
Dr. Linda Théodor, a visiting doctor from Port-au-Prince, Haiti, with Drs. Jordan Bonomo, left, and John M. Tew in the Neuroscience Intensive Care Unit at UC Health University Hospital. Photo by Cindy Starr / Mayfield Clinic. The commitment by UC Health Team Haiti to Bernard Mevs Hospital/Project Medishare, Haiti’s only hospital dedicated to intensive care and trauma, continued this week not with another visit to Haiti but with a special visit to Cincinnati. Dr. Linda Théodor, one of two full-time physicians at the Port-au-Prince hospital, came to UC Health University Hospital to, in her words, “see how an ICU really works.” She is also learning to use technologies that could help her save more lives at Bernard Mevs. The intensive care unit at Bernard Mevs, the only one in Haiti, has only four beds. It also lacks many amenities that are standard in the United States, including continuous cardiac monitoring equipment, ultrasound machines and a sufficient number of experienced clinical staff members. When foreign volunteers are not at the hospital helping out, Dr. Théodor finds herself working up to 90 hours a week, caring for babies, children and adults in the ICU and 12-bed general ward. The medical landscape she covers is almost infinite, challenging her with everything from neurotrauma to abdominal typhoid. She also instructs Haitian medical students in their clinical rotations. Jordan Bonomo, MD, a specialist in emergency medicine and neurocritical care at the UC Neuroscience Institute and Mission Director for UC Health Team Haiti,* is helping to equip Dr. Théodor with new knowledge during her two-week visit as an academic guest of the UC Department of Emergency Medicine. He also hopes to help Bernard Mevs acquire some important equipment during the team’s third annual visit to Haiti in early 2013. The first big news came this Tuesday. Turning to Dr. Théodor during a break, Dr. Bonomo announced that he had just received word that Cheetah Medical, manufacturer of an advanced, non-invasive cardiac output monitor, will be donating a machine to Bernard Mevs. Cheetah Medical sent a portable loaner with UC Health Team Haiti last year and has increased its commitment to the team as a result of its developing relationship with University Hospital. “They’re giving us a machine that we can take to Haiti and leave there,” Dr. Bonomo said. “They’re also donating enough pads (sensors) to take care of patients for a year.” Dr. Bonomo said that the heart monitor made a difference during the team’s visit in 2012 and that Dr. Théodor has learned how to use it. His goal for the remainder of her visit, he said, is to ensure that when she goes back she can not only practice what she does now but also teach the technology and some of the fundamental concepts of resuscitation, such as volume-loading in the management of critically ill patients. The concept is a vital component of emergency medicine and critical care, Dr. Bonomo continued. “When people come in to the emergency department with low blood pressure (hypotension), it’s usually because of one of two things: either they need more fluid, or their heart needs to squeeze harder. The two problems are managed in vastly different ways, and the Cheetah machine makes it a lot easier to determine which of those two problems you’re dealing with. The hope is that with the change in management, so comes a change in mortality and morbidity. When you augment that with the ability to look at a heart with ultrasound, the next big step in Dr. Théodor’s training, then she can answer all the questions.” UC Health Team Haiti again hopes to take ultrasound equipment to Bernard Mevs next year, and Sarah Winston, MD, a fourth-year resident in the Department of Emergency Medicine, is working with Sonosite to make a permanent donation of an ultrasound machine to the hospital. The team is also hoping to connect UC Health’s emerging telemedicine program to a telemedicine robot that another institution recently donated to Bernard Mevs, allowing for remote ICU rounding, telemedicine conferencing and the ability to remain engaged even from a distance. Dr. Théodor’s visit has been enriched by the behind-the-scenes contributions of Jessica Wiles, RN, BSN, Clinical Education Program Developer in the Emergency Department and Team Coordinator for UC Health Team Haiti. Ms. Wiles has enabled Dr. Théodor to spend time in the operating room, on the helicopter with AirCare & Mobile Care and at social events in her honor. Although Dr. Théodor’s native language is French, she communicates effectively in English. She has been a doctor for seven years, the fulfillment of a childhood dream. “It is difficult in my country to have a dream, because after high school it is difficult to enter to the university,” she said. A strong, slim young woman, she appears more determined than daunted by the chasm between her resources in Haiti and those she sees at University Hospital. “The first thing I learned is there is a big difference between their ICU and ours,” she said, laughing. “I can’t find the words to say the difference between my country and here: the size, the structure, the equipment. I learned that there are many things to do in Haiti.” “When Linda came here, she said something on rounds that everybody in the hospital has heard now,” Dr. Bonomo said. “When we started ordering labs every four hours, she said, ‘What? Why? Can’t you just examine the patient?’ It gave us a chance to see our own practice through different eyes as well.” At Bernard Mevs, some labs are done twice a day, others not at all. Dr. Bonomo said that Dr. Théodor “will take some of this” experience back to Haiti, and Dr. Théodor is determined to make it so. “I take care of patients and I want to have the competence,” she said. “Coming here was a surprise for me. I thought at first that Jordan was maybe joking. But it’s really real. Some people before Jordan told me that they would
Dr. Richard Curry is Catalyst for New Neuro-Oncology Clinics
In his new clinics, Dr. Richard Curry, above, is helping patients who suffer neurologic side-effects of cancer. Richard Curry, MD, was a medical resident when he realized he had a mind for neurology and a heart for people who had cancer. That duality of thought and feeling led him to pursue a unique fellowship, one that wedded neurology and oncology. More recently, Dr. Curry’s hybrid training has led to the establishment of two new clinics at the UC Neuroscience Institute and the UC Cancer Institute, two of the four institutes of the UC College of Medicine and UC Health. The two new clinics are: A Neuro-Oncology Clinic for patients with primary or metastatic brain cancer A Neurological Complications of Cancer Clinic for patients with all types of cancer who are suffering neurological side-effects Dr. Curry, an Assistant Professor of Medicine in the Division of Hematology-Oncology and an Assistant Professor of Neurology, is seeing patients in these clinics at the Barrett Center at the UC Medical Center. He is seeing patients with primary and metastatic brain cancer on Wednesdays (1-4:30 p.m.), and he is seeing patients with all other types of cancer who are experiencing neurologic symptoms on Thursdays (8 a.m.-12 p.m.). Dr. Curry notes that of all patients who develop cancer, 15 percent will develop neurologic complications, many of which are treatable. Those complications include: headaches seizures stroke neuropathy spasticity increased intracranial pressure leptomeningial disease, which occurs when cancer cells spread to the cerebrospinal fluid that bathes the brain and spinal cord In his Neuro-Oncology Clinic, Dr. Curry is evaluating and treating two groups of patients: those whose tumors started in the brain and those whose cancer started elsewhere in the body and has metastasized to the brain. “An important focus of this Neuro-Oncology Clinic involves offering early-phase clinical trials to patients with all types of brain tumors,” Dr. Curry says. “The clinic creates a unique opportunity by providing traditional medical oncology treatments for patients with complicated neurologic disease.” Through the Neurological Complications of Cancer Clinic, Dr. Curry will work closely with patients and their oncologists to develop or fine-tune a treatment plan that takes neurological side-effects into account. He will spend the rest of his time seeing patients at the UC Medical Center and in his neurology practice, which covers conditions ranging from cerebrovascular disease (stroke) to multiple sclerosis. Dr. Curry, a graduate of Miami University and the University of Toledo College of Medicine, developed his hybrid approach to cancer and the brain during his neurology residency at UC. A two-month rotation in hematology/oncology awakened him to the rewards of working with cancer patients and their families. And as his residency training continued, his understanding of “the overlap between neurology and cancer” gained clarity and began to crystallize as a vision for his future. While working with Ronald Warnick, MD, Medical Director of the UC Brain Tumor Center, and the center’s radiation oncologists, Dr. Curry determined that he might be able to develop a special niche at the intersection of neurology and cancer, and he began to investigate fellowships that offered training in that specialized area. Dr. Curry found the fellowship he was looking for at the Memorial Sloan-Kettering Cancer Center in New York. Dr. Curry says he has been drawn to people with cancer because they share an outlook that is informed by the urgency of their disease. “They are the most loving patients that you could have,” Dr. Curry says. “They appreciate everything, anything, that you can offer them. “Usually, in my experience, the patient is the strongest person within his or her family. I’ve always found it inspiring to have patients like that. My patients are one of the main reasons why I enjoy coming to work in the morning. “It’s refreshing to see patients in my clinic with all kinds of cancer and to be able to say, ‘This is the plan that we designed, and together, we are seeing results.”
Dr. Revilla Awarded the James J. and Joan A. Gardner Family Center Chair for Excellence in Parkinson’s
From left, James J. and Joan A. Gardner with Fredy J. Revilla, MD, at the Cincinnati ShakeUp for Parkinson’s fundraiser in April 2012. Photo by UC Academic Health Center Communications Services. Fredy J. Revilla, MD, Director of the James J. and Joan A. Gardner Family Center at the University of Cincinnati Neuroscience Institute, one of four institutes affiliated with the UC College of Medicine and UC Health, has been awarded the James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders Chair. The chair, established by the Gardner family with a generous donation, is not something in which Dr. Revilla will recline. Rather, it is an endowment whose proceeds are intended to fuel creativity and new directions in research. The endowment is housed within the UC Department of Neurology, which manages the principal (the original sum) and distributes proceeds (from dividends, capital gains or interest) to researchers. Funds are not withdrawn to cover operating expenses. “This is a tremendous honor,” said Dr. Revilla. “We are privileged to be stewards of this generous gift from Joan and James Gardner. It is a gift that will continue giving, as we use proceeds to explore new avenues of research.” Best of all, endowment funding like the Gardner Family Chair will persist during periods when government-funded research grants are difficult to acquire. Academic health centers are currently in such a period, with funding from the National Institutes of Health (NIH) relatively stagnant and, with inflation, actually below what it was a decade ago. At the same time, the costs of running research labs has been rising, and the numbers of scientists who submit grant proposals are at record highs. In January 2012 the NIH announced that the success rate for research grants in 2011 fell to an all-time low of 18 percent. Dr. Revilla, who also serves as Associate Professor of Neurology at the UC College of Medicine, has personal research interests in Parkinson’s disease, Huntington’s disease and essential tremor. His most significant Parkinson’s research involves balance and gait. Read about Dr. Revilla’s upcoming attempt to summit Mount Sajama, the highest mountain in Bolivia, in honor of his patients >> The Parkinson’s program at UC and UC Health has undergone a significant transformation since Dr. Revilla was recruited from Washington University in St. Louis to become the center’s director in 2003. On the clinical front, the number of neurologists with fellowship training in movement disorders has doubled, from two to four, and two neurosurgeons with expertise in deep brain stimulation have been added. The center’s basic science efforts began to grow in 2002 with a major gift from the James E. and Anne R. Bever family, and in 2003 Saul Schottenstein established the Selma Schottenstein Harris Laboratory for Research in Parkinson’s, a research laboratory that has furthered the study of growth-factor therapies and novel genetic models in Parkinson’s. The Gardners’ landmark gift in 2007 established the James J. and Joan A. Gardner Family Center. “Slowly but steadily, our center has gained momentum,” Dr. Revilla said. “We have cemented our collaborations not only with NIH but also with the Michael J. Fox Foundation, the Davis Phinney Foundation and the Brian Grant Foundation. We have become integral to the Parkinson’s community through local fundraisers and our role as the American Parkinson’s Disease Association’s official Information and Referral Center for Ohio for our region. “The Gardner Family Chair builds on our success,” Dr. Revilla continued. “In return we pledge to the Gardners – and to our patients – to continue to provide the best clinical care available, to pursue laboratory research to the best of our ability, and to bring new hope to our patients by offering the most promising clinical trials.” – Cindy Starr