Dr. Stanley White is no stranger to research. First as a PhD student at Purdue University, then throughout his more than 50-year career as an aerospace engineer and scientist. So it’s no surprise that when he started experiencing difficulty walking, poor coordination, and some troubling cognitive problems, he approached it like any other research project.
After a string of misdiagnoses by neurologists and other medical professionals, he took matters into his own hands and began researching his symptoms online and in the medical literature. As a result of his thorough research, he self-diagnosed himself as having normal pressure hydrocephalus (NPH).
“I’d seen several internists and neurologists who provided a variety of opinions, everything from Alzheimer’s and vascular dementia to Parkinson’s, MS and old age, none of which were NPH. But one day I found a notation on a radiologist’s report that mentioned NPH. The neurologist discounted it. I didn’t and I continued digging deeper,” White explained.
That digging helped save him years of pain and discomfort. After his eureka moment, he contacted neurosurgeon Dr. Marvin Bergsneider, who heads the NPH Research Group at the University of California Los Angeles (UCLA.) White volunteered to participate in a clinical trial and in a 40-minute surgical procedure, Dr. Bergsneider and his team installed a ventriculoatrial (VA) shunt with a magnetically programmable 20-200 mm Hakim-Codman shunt in July 2007. Shortly after, he required a revision to address deflating issues, so a 70mm regulator valve was added. Since then, White has remained largely symptom-free.
Sadly, White’s experience is not uncommon. Today, more than 700,000 Americans are estimated to have NPH, but fewer than 20 percent receive an appropriate diagnosis; consequently, the condition often goes undiagnosed and untreated. Without appropriate diagnostic testing, NPH is often misdiagnosed as Alzheimer’s disease or Parkinson’s disease, or the symptoms are attributed to the aging process. In fact, of the estimated 5.2 million individuals diagnosed with dementia, 10-15 percent are believed to actually have NPH, which is treatable.
“At the hospital where I volunteer, I was unable to find anyone with knowledge of NPH, other than what one might glean from a news article. We really have a lot of educating to do,” White said. “The lack of awareness of NPH is having a terrible impact on families because it’s hard for people to find someone knowledgeable to talk to and ask for advice.”
That’s why the 87-year-old retiree now dedicates much of his time to raising awareness about NPH, particularly among medical providers.
Currently, he is a Clinical Volunteer for Mission Hospital Medical Center in southern California where he assists nurses, trains and supervises more than 30 volunteers, and serves as a VA “Vet-2-Vet Weekly in-Home Visitor” who checks on and reports on patients’ wellbeing to their families. He is also a HydrocephalusCONNECT Peer Support Volunteer for the Hydrocephalus Association where he shares his experience and offers advice to patients recently diagnosed with NPH.
White gives presentations on NPH and will speak to whomever will listen. His most recent endeavor is trying to educate staff at senior centers since they are often the first ones to notice the telltale signs of NPH.
“It isn’t just members of the medical community who need more education on NPH, the general public needs more awareness too,” White said. “When I’m giving a talk, I discovered that the most attention-grabbing statement is when I say to people that NPH is a condition that comes late in life and can steal your brain, but if caught early the symptoms are reversible! That usually gets people’s attention.”
White has held several positions at major companies in the engineering and aerospace field, most notably he spent 31 years at North American Aviation/North American Rockwell/Rockwell International developing guidance, navigation and control and communications systems for aircraft, missile and space systems. He has also served as an engineering professor, an inventor (82 U.S. patents) and is the co-author of three engineering textbooks and dozens of research articles.