Lewy Body Disease Research Impacts Real Lives

The research happening at Florida Atlantic University touches families and friends near and far. Time and again, the results of our scientists’ work positively impacts our lives. Here we share an example that’s close to home. Miriam Alam Campo is the director of the Office of Sponsored Programs. She’s worked with researchers throughout her professional life. Now, the work of one FAU researcher gives her family hope for a better future. We asked her to write about her experience. Here’s what she had to say:

My parents are amazing people who, in 1970, left their homeland of Cuba to ensure that their three daughters would have a better life than they did. They worked hard their entire life. My dad was always the provider; my mom, the glue that holds our family together. Dad will tell you his greatest triumphs are the college degrees that his three girls earned.

Not long ago, my personal and professional lives came together in a way that was never expected. Research has been an integral part of my career. As a research administrator, I’ve seen many research projects make a difference. However, research has never been as relevant to me as it is now.

About four years ago, my dad, Pedro Alam, was diagnosed with Lewy Body Disease (LBD). I had never heard of it and rushed to read about this disease impacting my dad’s life. What I learned was scary. And for a while, it felt like my family and I were alone in this new struggle. There was no doubt that we would do everything we could to help him as he faced this degenerative disease.

According to the Lewy Body Dementia Association, “LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with either diagnoses develop similar cognitive, physical, sleep and behavioral symptoms.”

My dad has already experienced these symptoms plus hallucinations, another common indicator of LBD. The disease eventually robs people of their dignity, independence and quality of life. As things with dad became increasingly challenging, I searched for a support group for help and guidance.

Shortly after I began working at FAU, I met James Galvin, M.D., associate dean for clinical research in the Charles E. Schmidt College of Medicine and a world-renowned LBD expert. To my surprise, Galvin had worked with the past president of the local chapter of the National Parkinson Foundation, Bonnie Austin, to launch a LBD Caregivers Support Group.

The meetings, led by Austin and Keri Greenfield, an adult/geriatric nurse practitioner, are held monthly at FAU and are guided by group members. Although I’m not the primary caregiver for my dad — my mom is — I find solace, comfort, information and care by attending this support group. We share personal stories, strategies, products and services available to assist with the challenges of LBD. Sometimes we laugh. Other times, we cry as the pressures of being a caregiver become overwhelming. This is where we find some peace.

Though he may no longer have a spring in his step, with Dr. Galvin’s research, I am confident that help for LBD patients is around the corner. Although it may not be soon enough for my 85-year-old dad, I remain hopeful that others will benefit from the advances that will come from FAU research.