Maybe you don't have Alzheimer's after all
She was 65 years old. "And I was a young 65, believe it or not," says Jeanne Folmer. "Oh, I did everything. I just did everything." Retired from real estate and sales, she kept busy playing golf with her sister, antiquing and dating. Now things were going downhill. Fast.
Sometimes she couldn't find the words she wanted to say. And she kept falling down.
"Oh, I just fell everywhere," she says. "It was awful."
She fell getting out of a chair at the beauty salon and hurt her back. She fell going down the steps and broke her nose. She fell on her son's stone steps and broke her glasses.
"I mean, I really did some good ones."
Once when she was in a McDonald's parking lot heading to her car with her 5-year-old twin grandchildren, the kids had to run back inside the restaurant to ask customers to come out and help her get off the ground.
"It didn't matter what I was doing or where. If I bent over to pick up a piece of mail, I fell."
She didn't sound the alarms to her four grown kids though, telling them she was just getting klutzy.
"I was afraid," she says. That maybe it was Alzheimer's. Or dementia. Or God knows what.
"I just didn't want to know because I thought it was going to lead to a lot of problems. And it did, believe me."
So instead of confiding her fears, she hunkered down in her apartment at the senior community Harmony Creek in Orange, Calif. She gave up golf and started canceling plans, turning down dates to spend her nights with Bill O'Reilly on Fox News instead.
Her kids weren't fooled though.
"She was starting to look like she had just gotten off a carnival ride," says her daughter Rhonda Wozniak, who is 40 and lives in Westminster, Calif. "Her walking just became really bizarre, almost like she couldn't stop herself."
And conversations became guessing games. Jeanne might call her daughter and say: "Can you bring over ... um, um, um." And her daughter would throw words out, trying to guess what she wanted.
She pestered her mom to go to a doctor. And her mom kept saying that she would. "But she's always been very independent," Rhonda says. So her mom was going to go to the doctor when her mom saw fit to go to the doctor.
It wasn't until after more than a year of falling down that Jeanne finally made an appointment to find out whether she was just getting old or there was something wrong with her.
The doctors did an MRI. It showed she had enlarged ventricles in her brain. But that can mean many things. It can mean Alzheimer's. It can also mean that the brain is simply getting old and atrophying. Or it can mean she had some other condition. One of those other conditions is normal pressure hydrocephalus, commonly called NPH, or water on the brain.
There are three hallmarks of NPH. The first to surface is usually imbalance. People with NPH are less steady on their feet, fall a lot and sometimes shuffle when they walk. The second symptom is urinary incontinence. And the third is dementia or memory problems.
Jeanne had it all.
But still the diagnosis isn't easy. Those three symptoms also fit with other conditions, like Alzheimer's. Many primary care doctors simply aren't on the lookout for NPH. Luckily, Jeanne's was.
"Thank goodness," she says.
Her doctor sent her to UCI. There, doctors drained some spinal fluid over a three-day period to see if her symptoms would improve, the only sure way to know if a patient has NPH.
Jeanne's symptoms improved and the diagnosis was made. UCI neurosurgeon Dr. Laura Pare did surgery on Jeanne, implanting a shunt in her brain to drain the fluid back into her abdominal cavity where it is reabsorbed into the body. The procedure gives NPH patients an 86 percent chance of recovery.
Now if only the word spread.
"We think there are a lot of people out there who are undiagnosed and going untreated," says Pare. "A lot of primary care physicians don't know much about it." And a lot of seniors don't seek help because they think they're "just getting old."
Pare lectures to community physicians and retirement home communities about the condition, the cause of which is unknown.
According to Pare, 7.5 million Americans are estimated to have some form of dementia and NPH is believed to account for 5 percent of those cases, which means about 375,000 people have it. But the number of people being treated for NPH is only around 11,000.
Jeanne is one of the lucky ones. Now 71, her walking is "pretty much" back to normal. She can find the words to say what she wants to say. And she's dating again, antiquing and socializing.
"Isn't that something?" she says. "Oh, what a relief it wasn't Alzheimer's and that they can help me. I just can't get over the difference. I'm out and about now. I'm just so glad. Oh, I can't tell you."
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(c) 2009, The Orange County Register (Santa Ana, Calif.).
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