
美高梅官网 CAHS student hopes her experience as a patient helps her as a researcher
Her experience with Friedreich's ataxia provides a unique perspective for her research
When Caroline Spencer was diagnosed with Friedreich鈥檚 ataxia (FA) just before her 24th birthday, she unfortunately knew what was ahead for her. Spencer, now 31 and in her fourth year as a doctoral student in the (CSD) at the 美高梅官网 (美高梅官网) , was familiar with FA from her studies in neuroscience as a 美高梅官网 undergrad and while getting her master鈥檚 degree in speech pathology from Purdue University.
鈥淚t was pretty tough to take because, even though I knew something was wrong and the answers I鈥檇 been getting weren鈥檛 right, I didn鈥檛 want FA to be the answer,鈥 she says.
FA is a genetic condition that affects the nervous system and causes movement problems. People with this condition develop impaired muscle coordination, gradual loss of strength and sensation in the arms and legs and impaired speech, hearing and vision.
Spencer says it was when she was around the age of 20 that she first went to the doctor because of problems she was having with her balance.
鈥淚 was never very athletic or coordinated, and it took me a long time to learn to ride a bike,鈥 she says of what she now sees as her earliest symptoms. 鈥淚 have two brothers and they don鈥檛 have it, and neither of my parents are symptomatic, but they are both carriers, so I鈥檓 the lucky one who got both recessive traits.鈥
Spencer says the last part of that sentence with a smile and quick laugh, something she does a lot during a conversation. That鈥檚 a bit unexpected coming from someone who knows that her mobility, which is already challenged, is most likely only going to become more limited in the coming years. She says she doesn鈥檛 have any other choice but to maintain a positive attitude.
鈥淧sychological and emotional states have a big impact my physical states,鈥 Spencer says. 鈥淚f I鈥檓 sad or worried or tired or stressed or anxious, that all then has a domino effect. I鈥檒l be more fatigued and less coordinated. For anyone, psychological or emotional factors influence their physical factors, but I think it鈥檚 even more obvious for me. That鈥檚 not to say I haven鈥檛 struggled with those things, too.鈥
Spencer speaks haltingly and it takes some effort to get her words out. Her steps are slow but determined, and she gets around with the help of her service dog, Clark, a 4-year-old white and black Great Dane who she has had for three years.
鈥淔or three or four years after I was diagnosed I didn鈥檛 use any assistive device at all. Whether or not it was a good choice, I don鈥檛 know,鈥 says Spencer.
Her fear was that once she started using an assistive device, there would be no turning back. She finally got to the point where she needed to use a walker, something that only lasted about four or five months. That鈥檚 when she got Clark. The two of them are familiar figures in the hallways of the Health Sciences, Medical Sciences and CARE/Crawley buildings. Spencer is still able to drive and Clark hops into the backseat of her SUV whenever it鈥檚 time to go somewhere.
Spencer is currently working on a National Institutes of Health fellowship grant to fund her dissertation and training in neuroimaging analysis, using data related to speech language pathology research conducted by Suzanne Boyce, PhD, professor in CSD and Spencer鈥檚 advisor. Spencer says the outcome of this project will provide further knowledge about the interaction between phonological and motor networks for speech production in children who fail to acquire all the sounds of their language.
鈥淗opefully, my experience of being a patient will help my research be better, more focused and meaningful,鈥 she says. 鈥淗opefully I can help identify the problems that really need to be focused on. I really enjoy being the bridge between talking to patients and talking to other researchers so I feel like sometimes I can translate that gap a little bit.鈥
Featured photo: Colleen Kelley/美高梅官网 Creative Services
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