Question:
Male, 40 years old, Deletion subtype
My son turned 40 in Dec 2025. I feel his memory is getting shorter. Forgetting a lot. Also, talking to himself. He never really did this, but it seems to be doing it a lot lately. Is this normal for adults. We are going to his primary soon. Should he have any test done?
Nurse Lynn’s Response:
New forgetfulness and increased or new self-talking in a 40-year-old with Prader-Willi syndrome should be evaluated promptly, as they may signal medical, psychiatric, or neurological issues rather than normal aging. Possible causes could include thyroid or vitamin deficiencies, metabolic changes, medication effects, mood disorders, seizure activity, or early dementia.
At his upcoming visit, consider requesting lab work (CBC, CMP, thyroid, B12, folate, vitamin D, HbA1c, lipid profile, cortisol, IGF-1), neurological evaluation and/or cognitive testing, psychiatric assessment, and review of sleep health/BIPAP data. Early assessment can help identify and treat reversible causes. Because cognitive decline and psychiatric changes can develop earlier in adults with PWS, early evaluation is critical to identify treatable causes and slow or prevent progression. While this may seem like a long list, it’s important to bring these questions to the provider’s attention so nothing is overlooked—covering these areas now can make a real difference in long-term outcomes.
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Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.