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After the Ice Buckets Are Empty: A Penn State Professor Living and Working with ALS

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Brian Curran in Rome.

In the summer of 2014, Brian Curran, Penn State Department of Art History Professor of Italian Renaissance Art, was officially diagnosed with ALS (Amyotrophic Lateral Sclerosis) at Johns Hopkins Hospital. His diagnosis came after a long process of uncertainty and provisional diagnoses, and in that sense, he says, it almost came as a relief. In the wake of the diagnosis, however, he has struggled with a combination of uncertainty, fear, sadness and acceptance. But it has also become a saga of perseverance, for himself as well as for his wife and caregiver, Mary Curran, who is the coordinator of the Biomarker Core Lab in Biobehavioral Health in the College of Health and Human Development at Penn State. Despite his condition, Curran has continued to teach a full course load, advise graduate students, participate in conferences and lead healthcare reform campaigns on campus. He also recently helped to reestablish and preside over the Penn State chapter of the American Association of University Professors (AAUP), and participate in an ALS research study.

“Overall, it’s been a good year,” said Curran. “Now we know. I don’t want to say it’s a relief, but I had been diagnosed with PLS [Primary Lateral Sclerosis] for so long, and it is so rare that no one has heard of it. Now, ALS, that’s something people will recognize and understand.”

Brian and Mary Curran

After several years of balance issues and falls, and testing for everything from Multiple Sclerosis to Parkinson’s to Lyme Disease and even a brain tumor, he is at peace with his diagnosis.

“It seems counterintuitive, but it is true that people find relief in diagnosis even when the condition is degenerative,” said Dr. Zachary Simmons, Professor of Neurology and Humanities and Director of the Neuromuscular Program & ALS Center at Penn State Hershey Medical Center. “It allows them to move forward, understand what they have, and plan their lives better. The biggest positive aspect with as early of a diagnosis as possible is the ability to assist the patient with the management of the limitations of the disease and the symptoms that it causes as well as what the future holds and how to prepare them for it.”

Curran’s diagnosis happened at an unusual time – it coincided with the ALS Ice Bucket Challenge, which raised awareness about ALS and much needed funding for ALS research. Since July 29, 2014, The ALS Association has received $115 million in donations.

“It certainly raised awareness,” agreed Simmons, whose clinic focuses on three areas of ALS research – clinical trials, patient care, and scientific knowledge. “From a research point of view, it has the potential to be enormously helpful because ALS is a rare disease. There are only about 20,000 people in the US with ALS at a given time, so there is less research funding than for more common disorders.”

“I think the Ice Bucket Challenge made me feel less alone,” said Curran. “I didn’t feel like I was the only person with it. It’s now something that is talked about. Before, it was simply known as Lou Gehrig’s Disease, and it was a death sentence.”

Curran’s colleagues in the Department of Art History and Dean Barbara Korner of the College of Arts and Architecture also participated, raising $1,135 and drenching themselves with ice water on the steps of Borland Building, as Curran counted to three.

The Department of Art History takes the Ice Bucket Challenge

“It was very moving,” recalled Curran. “That they would do that for me meant a lot. ”

Curran is one of 350 participants in a research study at ALS TDI (ALS Therapy Development Institute) in Cambridge, MA (a research institute that was founded in 1999 in his hometown of Newton, MA). He recently traveled to Boston to donate skin cells for stem cell research and blood to map his genome in the search for genetic markers and mutations common to the disease. Another aspect of the study is an activity monitoring element that he must complete six days each month, which consists of wearing motion trackers on both wrists and ankles, completing three sets of exercises, and recording his vocal performance via phone by repeating a phrase, all of which might become more difficult to manage once the semester begins.

With a twelve-page curriculum vitae of publications, lectures, awards, and fellowships, Curran has more than proven his academic merit. Still, he continues to work on new projects. He plans to participate in a conference in Verona, Italy in November 2015 and another in Leiden, Netherlands in January 2016. He also plans to resume his regular teaching and advising duties this fall. Curran explains that his reason for keeping such a busy schedule is a simple one. 

“Because I love what I do. It keeps me going,” he said. “Teaching provides human contact, and I’d rather be in the world. My mother says, ‘I’m not as worried [about you] as I might be because you have so many interests in things – that keeps you engaged.’ I think it is important to be active as long as you can and stay engaged with what challenges and amuses you in this world – music, art, movies, and politics, in my case. In a way it’s work to try to keep up with it all, but it keeps you busy, and connected.”

“Being able to make adjustments in order to remain active is important,” said Steven Zarit, Distinguished Professor in the Department of Human Development and Family Studies at Penn State. “There is nothing more depressing than being isolated with nothing to do, and having emotionally satisfying things that one identifies with will help both Brian and Mary cope with the disease.”

Curran and his student award winners

This year alone, one of Curran’s Ph.D. students received a Fulbright to study in Sweden, and another completed her Ph.D. and will begin a faculty position in Nevada this fall. Former doctoral advisee, Douglas N. Dow, who recently finished his first book and earned tenure at Kansas State University was Penn State’s College of Arts and Architecture Art History Alumni Achievement Award recipient, an accolade that Curran describes as seeing his teaching career come “full circle.” 

Curran’s desire to keep teaching and mentoring students has met with certain physical challenges.

“I think the hardest part has been losing at least partial control over my speech. So much of my teaching is about the inflection and dramatic emphasis of important points,” said Curran, who lectures without notes and will be teaching an undergraduate writing seminar in the fall, and graduate seminar in the spring. “I have to conserve my energy these days. I have also had to get used to the fact that I have to speak more slowly and deliberately. That changes your style and your lesson plan. One strategy that I am trying to employ is to take a more interactive approach and let my students do more of the talking. Sometimes that even works!”

Accessing classrooms and restrooms, enduring winter weather, and carrying books and other objects while using a rolling walker are just some of the physical challenges he has had to face in the past few years. 

“I wouldn’t be able to do much of anything without assistance from my wife, Mary. She has to deal with a lot. She takes me to work and comes with me to P.T. My decreasing mobility is what we have to think about now. We’re trying to find out what services there are to help us, and there is plenty of research involved. Mary has taken on a large part of that burden. Dealing with a condition like this changes not only your life but also the life of your family day-to-day.”

Brian and Mary

 “There are barriers (physical and financial) to staying in your house, and insurance doesn’t necessarily pay for in-home care,” said Zarit, who has researched family caregiving and stress and emphasized the importance of maintaining a sense of normalcy and balance. “We’re set up poorly to help the caregiver, and what happens to people with limited means is that the caregiver gets overwhelmed, and then we have two people who are sick. The more support they get from neighbors, family, and friends, the better they both will do.”

Curran also mentioned the stress and cost of traveling to specialists for treatment – everything from hotel rooms and gas to having to buy a car that accommodates his physical limitations (as well as carry his rolling walker). They have installed railings and a chair lift to modify their home; however, those costs are considered home renovations and are not covered by insurance.

Dr. Simmons hopes that a pilot program that will begin at Penn State Hershey will help lower costs and travel time for ALS patients through tele-medicine initiatives.

“It is hard to make the trips to the clinic, and once patients are here, the visits are hours-long. It is exhausting. We are working with our information technologists to conduct the visits with the health care professionals online through a tool similar to Skype, but with the confidentiality required to meet HIPPA guidelines. My hope is to get the pilot program up and running in August,” explained Simmons.

Curran is confident that long-term developments in ALS research, combined with the increased awareness and funding for both research and support that followed in the wake of the Ice Bucket Challenge, will make it easier for patients like himself to continue working and maintain their quality of life. An avid social media user, he tries to make the most of contemporary technology to keep in touch with his global network of friends, collaborators, and colleagues (including many of his former and current students) and help him to maintain a work/life balance.

As for the work portion, Curran wants to concentrate on finishing his current book projects – Past, Present, and Place in Italian Renaissance Art and The Social Life of Statues: Case Studies from Antiquity to the Present Day.

“Brian has been one of our most accomplished scholars and has become a leading figure in his field, as he rose through the ranks at Penn State from an assistant to a full professor,” said Craig Zabel, Chair of the Department of Art History. “He has also been an excellent citizen as far as service contributions to the university. Clearly he thrives on all aspects of being a professor and is one of the most knowledgeable people I have ever met, from the art of the Italian Renaissance to classic horror films. He can verbally take you on a walk past every stone in Rome, which has inspired generations of art history students, and we want to make every effort to keep him active in all of those areas.”

Brian Curran in Rome

Zabel also attributes Curran’s ability to continue doing what he loves to his positive attitude. The way that he has handled the entire process has been an inspiration to his colleagues and students. During his tenure at Penn State, Curran has overseen six completed dissertations as principal advisor and is currently overseeing six dissertations in progress. He also served in the past as the Graduate Officer for the Department of Art History, and has advised numerous Ph.D, M.A. and undergraduate research thesis projects

“I’m just doing my job,” said Curran. “And I’m going to do it as long as I can.”

For more information about ALS research, please visit The ALS Association and ALS TDI websites: http://www.alsa.org/  and http://www.alstdi.org/

_____________________

Brian Curran received his Ph.D. from Princeton University in 1997. He worked at the Museum of Fine Arts, Boston and taught at University of Massachusetts, Amherst and Columbia University before joining the faculty at Penn State  in 1997. Curran is the author of The Egyptian Renaissance: The Afterlife of Ancient Egypt and Egyptian Antiquities in Early Modern Italy (University of Chicago Press, 2007) and the co-author of Obelisk: A History (Cambridge, MA: Dibner Institute/MIT Press, 2009).

A fellow of the American Academy in Rome and Villa I Tatti in Florence, Curran is also the recipient of the Faculty Award for Outstanding Teaching from the College of Arts and Architecture, the George W. Atherton Award for Excellence in Teaching, from Penn State, and the President’s Award for Engagement with Students, also from Penn State. In addition to his book projects, he is currently working on several articles, an online bibliography, and some book chapters. He is serving his final year as editor of the publication, Memoirs of the American Academy in Rome.