Lifting the Fog: Sharp Thinking with PKU

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Many people with PKU describe being on a well-managed diet and treatment plan as feeling like a “fog has been lifted.” Whether it is trouble concentrating or difficulty with planning, cognitive issues may not even be noticeable until after a successful PKU routine begins. In this podcast, our expert panel explores:

  • What does being in a “fog” feel like? How can you and your loved ones recognize the signs and symptoms?
  • How cognitive problems can affect your life and relationships.
  • The role of elevated Phe levels and Phe variability in maintaining cognitive function.
  • Strategies and tools for getting control and feeling your best.

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Let's get started.  So we know about if Phe levels related to PKU for yourself or a loved one, and we know that you want to get those down, and there are targets that your healthcare provider has discussed and you want to work on that and you know how important that is.  But what goes along with it?  If Phe levels are higher can you have foggy thinking?  And if it's you the patient do you even know it or do other people notice it who are around you, or if you get those levels down can you see a difference?  Well, we're going to hear about that from our guests. 

Let's start with Laura Jeffers.  Laura is a metabolic dietician.  She's at the world-famous Cleveland Clinic, everybody has heard about that, and Laura has been a dietician for eight years, and she certainly helps a lot of people, children and adults with PKU.  Laura, first let me ask you, what do people tell you about this fog?  How do they describe it? 

Hunter, so in your own life how have you noticed what we're calling here foggy thinking?  How has it been for you, and when have you noticed it? 

And then I've noticed too, for example my mother will point out, she says she knows me best, that I will get irritable and just really kind of take things personally and over-think situations and overreact.  So for me it's really just a drained energy, lack of motivation and irritability.

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