Treatable dementia: how one patient’s early NPH diagnosis restored hope

When Ken Robertson stepped out of his Airstream travel trailer, a wave of disorientation and dizziness hit him. During his five-week vacation with his wife, he started experiencing unusual symptoms, including bouts of incontinence, sudden incontinence, and a strange heaviness in his legs that made it difficult to pick up his feet.

But when he returned home and found himself struggling to recall friends' names, navigate his computer, or recognize familiar places, Robertson knew something was seriously wrong.

"My dad had dementia, and I've always been afraid of going down that path," Robertson said of his rapid cognitive decline. "When my mind suddenly shut down, I was terrified that's exactly where I was headed."

After completing cognitive tests and undergoing several scans, he was diagnosed with Normal Pressure Hydrocephalus (NPH) - a condition where spinal fluid, which is produced in the brain's ventricles and absorbed into the bloodstream, builds up due to impaired reabsorption. This excess fluid causes the ventricles to enlarge, putting pressure on surrounding brain tissue and disrupting normal brain function.

When left untreated, NPH can cause a steady decline in memory, cognition, and mobility, and can ultimately lead to dementia. However, it is the only treatable form of dementia.

Read: I've been diagnosed with Normal Pressure Hydrocephalus. Now what?

Fortunately for Robertson, his diagnosis happened in the early stages and was successfully treated by Warren Boling, MD, Chair of Neurosurgery at Loma Linda University Health. The success of his surgery left Robertson not only grateful for catching the condition early, but he is now committed to encouraging others to get evaluated if they notice similar symptoms.

Ken, and his wife, Winnie.

Before NPH, Robertson and his wife, both in their mid-80s, lived an active lifestyle, filled with golfing and travel. But as the symptoms of NPH crept in, Robertson's life shifted to focus on his disease.

Boling, his operating surgeon, emphasized that when signs of NPH become apparent, the goal is to treat the condition before cognitive symptoms develop. This is done through a minimally invasive surgery by inserting a ventriculoperitoneal shunt -- a small, mechanical tube that diverts excess spinal fluid from the brain to the abdomen, where it can be absorbed into the body -- through a tiny opening in the skull.

"For most people, the shunt system is a permanent solution," Boling says of the surgery's effectiveness. "It's connected to a programmable valve that controls how much cerebrospinal fluid is drained, allowing physicians to fine-tune fluid drainage without additional surgery."

The programmable shunt allows for noninvasive adjustments, a vast improvement over older models that require additional surgery. This reduces the risk of complications and improves long-term outcomes. Robertson could hardly wait for surgery.

"It's scary when you think about putting something in your brain cavity, but I was far more scared of where I was headed."

After the surgery, Robertson's recovery was smooth, relatively pain-free, and his symptoms started to ease. The incontinence improved first, followed by an improvement in being able to lift his feet to walk at a more normal pace. While his balance did improve, he is still undergoing physical therapy to strengthen his muscles and address lingering unsteadiness.

However, his cognitive improvement has been dramatic.

"Before the surgery, I flunked the first two cognitive tests," Robertson recalled. "After the surgery, I took another cognitive test, and it was an amazing difference."

Robertson estimates he has regained about 80% of his mental sharpness and credits the surgery with likely preventing the progression of dementia. He also actively exercises his mind to ensure sharpness. His daily routine includes reading an article, writing down what he remembers, and then reviewing for accuracy.

Looking back, Robertson feels fortunate to have received a timely and accurate diagnosis.

"There are thousands of people out there who have NPH and don't know it," he said.

For those facing similar symptoms, especially unexplained balance issues, incontinence, or memory decline, Robertson encourages them to get a medical evaluation. "Push for answers. You may have something treatable, like I did."

Although he still has days when his balance is a little unsteady, he can still play golf once a week and has resumed traveling with his wife.

If you or a loved one shows symptoms of NPH, call us to learn how to get a referral 909-558-6388 or visit our website here.