Buffy Boger, the parent of a 16-year-old Pompe disease patient talks about the speech and respiratory exercises often used by Pompe patients.
Pompe disease is a rare lysosomal storage disorder that impacts muscle strength. Weak muscles of the airways and tongue can affect their ability to talk, breath, and swallow.
As Buffy explains in this interview, her daughter Shaylee had a lot of weakness in her tongue that made it difficult to move food and keep her airway clear. She also had articulation problems and slurred speech. Shaylee also undergoes respiratory muscle strength training (RMST) to help her long-term breathing abilities.
This interview took place during Duke's Pompe Disease Patient Clinic and Meeting held April 7-8, 2017.