I have accomplished something I am very proud of—I received my Master’s of Science in communication and information from the University of Tennessee with a 4.0 grade point average!! It was an effort I initiated over three and a half years ago and one that involved tackling the curriculum one course per semester since I still worked full-time as a communications and marketing specialist. Not only did this require a long-term commitment from both me and the family members who supported me, but it also involved many long nights reading or writing a paper when I had just spent the entire workday drafting and proofing content for my employer. Talk about brain draining! Nonetheless, I managed the entire academic process (from enrollment to graduation), conducted original research that benefited my profession, and ultimately completed my degree with honors. Despite all this, what is probably most significant is that I achieved this after having been off the PKU low-protein diet for more than 18 years.
When reflecting back on all that was accomplished, what occurs to me is that graduation means more than just a degree—it is a demonstration, though be it an elaborate one, of my ability to engage in executive function.
What is executive function and why does it matter to PKU patients?
Executive function is defined by WebMD as “a set of mental skills that are coordinated in the brain’s frontal lobe” and “work together to help a person achieve goals” such as focus, time management, organization and planning. A person who has a lack of control on the PKU diet, especially those with more severe cases, might experience a breakdown in executive function. As a result, those critical aspects of the diet, such as remembering to do blood levels or making sure you take all of your formula, just don’t get done. To be fair, this absence of executive function does not mean that people with a lack of control on the PKU diet are lazy, but rather it is a symptom of the genetic disorder.
When I think about returning to a low-protein diet, I have often wondered if I would do well or fail miserably. But upon graduating from the University of Tennessee, I can say with certainty that, “yes, I do have the ability to engage in executive function,” and “yes, I am pretty good at focusing on a goal and planning long-term to achieve it.” No doubt, this self-awareness is imperative to my confidence as I continue to work through the notion of returning to the PKU diet in anticipation of a pregnancy. On a larger scale, however, I hope that PKU research continues to look at the variance between patients and ultimately determines why it is that some folks are more affected by high-phe levels than others. Whether it can be attributed to the effectiveness of a person’s blood-brain barrier or the ability to compensate by using other areas of the brain, perhaps more understanding can be gained by looking at those of us who are off-diet but also still high-functioning.