A Dementia That Can Be Cured

“I couldn’t even sign my name,” says an ex-teacher. It took years for doctors to spot the real cause.

At first, Dorothy Sorlie thought she was just getting old, though not as gracefully as she’d hoped. Retired from teaching English at a local college near her home in Eau Claire, Wisconsin, Sorlie, then 74, began losing interest in things she’d enjoyed, including reading and cooking. “I thought, Where are the good authors these days? Well, it wasn’t the authors, it was me,” she said. She couldn’t concentrate. Her handwriting changed. The symptoms occurred so gradually that initially she wasn’t aware anything was

happening. “It wasn’t like when you get a pain in your knee and know you need to see a doctor,” says Sorlie.

Things kept getting worse. Her neat teacher’s handwriting went from sloppy to illegible. “When you have to sign over power of attorney to your husband because you can’t even sign your name—that’s a terrible feeling,” she says. She started worrying that she might be developing early dementia.

The physical symptoms progressed too. Despite having been a good swimmer, she found she could no longer even stay afloat in a pool. More worrisome, she began having trouble walking and started falling. She also experienced urinary incontinence.

Through it all, her doctors struggled to explain what was happening.

“My decreased mobility was blamed on my arthritis and my right foot, which needed surgery,” Sorlie told the Eau Claire Leader-telegram. “My lack of interest ... I blamed on pain. The reality was I was unable to concentrate.”

Despite having surgery on her foot, Sorlie soon couldn’t walk on her own. She and her husband, Jim Urness, were desperate for answers. It would take years before they got them.

The doctors’ diagnoses, all incorrect, could account for one or two of Sorlie’s symptoms but not all of them,

and none of the treatments seemed to help. “I think I was tested for Parkinson’s disease maybe 2,700 times,” Sorlie says. It wasn’t Parkinson’s. It wasn’t Alzheimer’s.

The couple traveled across the country looking for someone who could tell them what was wrong, or at least treat the symptoms. “Native American healing in northwestern Alabama. Diagnostic chiropractic in Michigan. Eastern medicine, natural medicine, and Western medicine, of course,” says Sorlie. She also visited the famed Mayo Clinic in Rochester, Minnesota, for a consultation. One possible explanation for her symptoms after another proved incorrect.

Throughout the ordeal, Sorlie’s primary care doctor, Kevin Wergeland, an internal medicine physician at Mayo Clinic Health System in Eau Claire, refused to give up. “I’m blessed with a marvelous primary care doctor,” Sorlie says. “Never once did he say to me, ‘Dorothy, you’re getting older—adjust.’ ”

Dr. Wergeland sent her to a physical medicine and rehabilitation expert, who in turn referred her to neurosurgeon Jonathan Bledsoe, also part of Mayo in Eau Claire. Dr. Bledsoe ordered a CT scan, and Sorlie had barely returned home from her appointment when he called her. “He said, ‘We’ve got it, and we can fix it.’”

When Sorlie returned to the office the next day, Dr. Bledsoe told her that the ailment responsible for all her symptoms was a little-known condition called normal pressure hydrocephalus (NPH). Throughout her two years of medical visits and tests, Sorlie had never heard NPH mentioned. Although her condition was detected at an advanced state, having progressed during the years she was searching for a diagnosis, it was treatable.

In fact, NPH is sometimes referred to as “treatable dementia.” It is an insidious and mysterious disorder that can mimic many more common problems, including Alzheimer’s and Parkinson’s. An estimated 700,000 people in the United States have NPH, although it’s believed that fewer than 20 percent of them are correctly diagnosed.

NPH typically affects people 60 and older. Because the three main symptoms—difficulty walking, cognitive

problems, and urinary incontinence— can occur in people for other reasons, doctors can overlook or misinterpret them, explains Abhay Moghekar, MD, associate professor of neurology at Johns Hopkins University.

Older women often have bladder issues, for instance, and men may suffer from prostate disorders that cause incontinence. Walking can be compromised by arthritis, diabetes, or foot problems as well as by Parkinson’s disease. And while Alzheimer’s disease is the most common form of dementia, other conditions such as vascular problems, Lewy body dementia (which often occurs with Parkinson’s disease), Lyme disease, thyroid disorders, and even depression can all cause cognitive changes. “But if you see the three symptoms together, your suspicion [of NPH] needs to be raised,” says Dr. Moghekar.

The brain is surrounded by fluid, which helps to cushion and protect it. Sometimes too much of this cerebrospinal fluid accumulates, a condition called hydrocephalus. The excess fluid causes a rise in intracranial pressure and can damage brain tissues. Most cases of hydrocephalus occur either in newborns as a birth defect or later in life after a brain injury. When the condition occurs with no identifiable cause, it’s dubbed idiopathic NPH. The “normal pressure” part of the name is misleading. While NPH can occur with little or no increase in intracranial pressure, often the pressure fluctuates. Regardless, the excess fluid damages brain tissue and causes NPH’S trio of major symptoms.

The preferred treatment is to surgically implant a shunt to divert excess fluid away from the brain to elsewhere in the body—typically the abdomen— where it can be harmlessly absorbed.

Sorlie’s memories from the period after her shunt surgery are hazy, but she recalls her recovery as slow. She checked into a rehab facility and worked hard at physical, speech, and occupational therapy. She does remember lots of support from family, friends, and Mocha Joe, a rescued golden retriever therapy dog. “That dear dog,” says Sorlie. “When I was at my worst, he would sit by my side.”

Urness says that his wife recovered a lot faster than she thinks. “Dorothy sometimes doesn’t give herself enough credit for her recovery from the most serious aspects of the condition,” he says. “The major changes happened very quickly. I was greatly relieved within two weeks. And she continued to improve for a long time.”

Sorlie is now free of NPH symptoms and walks five miles a day. According to Urness, she’s at 120 percent. “And I’d just as soon you take off the 20 percent—i can’t keep up!” he tells her.

“I know that there’s no cure for this and that shunts can have problems,” Sorlie says. “I realize that I’m getting older. But I’m feeling very healthy.”

Sorlie is taking advantage of her

good health and using her dramatic recovery to inform others about NPH. She gives presentations to local organizations and senior centers and works with the Hydrocephalus Association as an outreach volunteer, a role that comes naturally to the longtime educator. Her goal is to help others avoid the long journey she endured before finally getting a correct diagnosis and effective treatment. “If this awareness can help one person avoid what my husband and I endured,” Sorlie says, “then my efforts are worth it.”