Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus

“Learning to Live with It” was Not an Option

Joyce Schwartz did not have any symptoms of Normal Pressure Hydrocephalus (NPH) that she was aware of until the age of 50 when occasional incontinence began. She thought that maybe it was just taking her too long to get to the bathroom. Even though she was only 50, she was aging, she reasoned to herself. But it worried her enough that she did schedule an appointment with her primary care physician. After an examination, the doctor could not find anything wrong. So Joyce returned to work and her routine.

Then at the age of 55 she fell down a couple of times at work for no reason. This was concerning but she kept going, dismissing the falls as clumsiness, for the most part. Despite the rationalization, she decided to return to her doctor. The doctor could not find a reason for the falls, but this time her doctor sent her to see a neurologist. The neurologist did an MRI and called her in to share the results. Joyce was told that her brain had shrunk but she shouldn’t worry about it. The neurologist never mentioned hydrocephalus or NPH. Joyce never went to see that neurologist again.

Instead, Joyce started searching the internet for information. She found the University of California at San Francisco (UCSF) Neurology Department and made an appointment. After testing with their team, Joyce finally received the diagnosis of NPH. She was 57 at the time.

The relief of having a diagnosis was short-lived when they informed her that they felt there was nothing they could do to help her. The doctors did not want to place a shunt because her ventricles were so enlarged that they felt the surgery was too risky and that she might not make it. As an alternative, one neurosurgeon suggested a shunt at the bottom of her spine. The procedure was performed but this did not help. Joyce was back to square one. She resigned herself to accepting that she would gradually deteriorate until she passed away.

Joyce returned home and just lived with it for a while. At the age of 59, she retired from work. Over time, the symptoms continued to worsen, especially with regard to her balance. She started using a cane, then moved to a walker, and eventually to a wheelchair. She was also experiencing short-term memory loss, though there was no one to confirm this except her husband because she was so removed from her previous life. In a last-ditch effort, she decided to get one more medical opinion. She was now 60 years old.

Joyce called the Hydrocephalus Association (HA) and asked if they had a referral list of neurosurgeons who specialized in NPH. HA gave her the name of Dr. Brian Andrews in San Francisco, California. He explained the risks associated with the surgery and recommended she be treated with a ventriculoperitoneal shunt (VP) . When presented with the surgical placement of a shunt, Joyce felt like she was left with no other option. She knew the symptoms would continue to worsen and that the possible benefits of the shunt far outweighed the way she was currently living her life with the NPH. She opted to do the surgery. She was 73 when the shunt was placed and the surgery went well.

Joyce is now 75. Since her shunt placement surgery two years ago, Joyce has been very happy with the results. and feels that everything has gradually improved. She has seen gains in her memory and while her incontinence has not disappeared altogether, it has also gotten better. She started doing physical therapy after the surgery and began walking by herself again, though a knee replacement has slowed her down a little. The most important thing, Joyce feels like she is living again.

Joyce is now a volunteer for HA. She offers to talk to individuals as they are newly diagnosed. And she has one powerful message to share with others who have symptoms that just don’t seem right: “Keep researching and keep searching for the answer for you and don’t give up.”