Alzheimer’s disease is the thing most aging men and women fear most. As the disease progresses and mental impairment grows worse, sufferers often retreat into resigned depression. So, imagine how you would feel if, after enduring eight years of worsening symptoms you feared were due to Alzheimer’s disease, you discovered that the condition actually causing your deterioration was something else entirely – and that there was a treatment that could make your life better.
Because NPH Mimics Alzheimer’s, This Canadian Man Feared the Worst
That’s the gist of this important article that we just came across from the BBC. It describes a 69-year-old Canadian who began experiencing frightening symptoms, and was virtually sure he knew the cause. “When John Searle started to fall down and lose his memory, he thought it was the early signs of dementia,” writes the BBC. “His body had slowly stopped working. He had trouble walking, he was falling down, he had bad short-term memory and, at 69, he was incontinent.” Because his sister had died of Alzheimer’s in her 50s and his father had died of dementia in his early 80s, Searle recognized the seriousness of his condition. As he told the BBC, “You kind of wonder where you’re going. You start thinking, is this it?” Along with his wife, he started planning for a future filled with steady decline and, ultimately, incapacity.
But something was different about John Searle’s case. When he went in for a definitive diagnosis, doctors concluded his trouble walking and his impaired mental state were not due to Alzheimer’s disease after all. They then tried to treat him for Parkinson’s disease, but that, too, was ineffective. By 2018, Searle, who had first experienced symptoms in 2010, could only get around by wheelchair and walker, and he began to grow “infuriated” at the lack of a clear diagnosis. But finally, he was seen by a Toronto neurologist, Dr. Alfonso Fasano, who at last arrived at a definitive answer: Searle had “a rare – and often undiagnosed – condition called normal pressure hydrocephalus,” or NPH. And although the condition is serious, for many patients it is treatable, and some symptoms can actually be reversed over time.
Because NPH Mimics Alzheimer’s, Most Sufferers are Improperly Diagnosed
In preparing this article for the AgingOptions Blog, we looked up NPH on the website of the Alzheimer’s Association. The article there describes the condition as a brain disorder in which excess cerebrospinal fluid accumulates in the body and affects the brain. The most common symptoms include just what John Searle experienced: problems with thinking and reasoning, difficulty walking, and loss of bladder control. NPH, or normal pressure hydrocephalus, is called “normal pressure” because, during testing, spinal fluid pressure often shows up as normal. The most common age group affected by NPH are people in their 60s and 70s, and estimates are that about 700,000 U.S. adults have the condition. “It is often misdiagnosed as Alzheimer’s or Parkinson’s disease” says the Alzheimer’s Association. “In fact, less than 20 percent of people with the disease are properly diagnosed” – a staggering statistic.
Fortunately, some physicians are determined to change that situation. “NPH is a condition that is not well understood yet,” Dr. Alfonso Fasano told the BBC. Today, he said, those who go untreated or improperly diagnosed may wind up in a nursing home, or die from complications. “That’s what we don’t want to see, people just dismissed.” John Searle could have been similarly ignored: he had seen a specialist in 2003 to be treated for migraines, and an MRI at the time showed evidence of excess fluid in parts of his brain, but because he had none of the symptoms of NPH he was never diagnosed. More than a decade later, after his condition had worsened, doctors once again suspected NPH but treatment resulted in no improvement and the diagnosis was inconclusive. Not until 2018 did Dr. Fasano finally provide the definitive answer.
NPH Mimics Alzheimer’s – Except that It Is Actually Treatable
In treating Searle, the BBC reports, Fasano inserted a shunt to drain away excess fluid, a procedure which has shown to be effective in recent studies. “More than a year later, and Mr. Searle says he is beginning to get his life back,” the article says. “His gait has improved as well as his memory. He regularly works out with a personal trainer at the gym and goes on walks to help build his strength back up.” He and his wife have started to travel again although Searle remains unable to drive. His wife says the biggest change is her husband’s mood. “The apathy that plagued him is gone,” she told the BBC. “He’s his cheery self again.” As Dr. Fasano stated, “This is a disease that is probably more common than we think it is, and this is a disease that can be treated very well, with a huge dramatic change of quality of life for these people.”
If you or a loved one is experiencing difficulty moving and thinking, your doctor may order a test for NPH, including an MRI or other scan which can help show whether it’s NPH or Alzheimer’s disease. “Several brain disorders, including Alzheimer’s disease, can cause overall brain tissue shrinkage,” says the Alzheimer’s Association, which “makes the ventricles look larger than normal.” But in NPH, even though the ventricles are enlarged, the tissue of the brain often does not appear shrunken. Other tests include neurological examination and testing of the cerebrospinal fluid. If it is NPH, the treatment described in the BBC news story may provide a significant ray of hope.
Facing the Future with the Right Retirement Plan
As you prepare for your retirement future, you’ve probably put some careful thought into getting the right health insurance. Maybe you’ve put together a basic financial plan or thought about whether you might want to age in place in your own home. But chances are that you’ve never been shown how essential it is that all the pieces of your retirement puzzle actually fit together. That’s the genius of a LifePlan from AgingOptions. Imagine that your family relationships, your legal protection, your financial plans, your medical coverage and your housing strategy were all like gears meshing seamlessly. That’s how a LifePlan works, giving you a sense of security and peace of mind that you never thought possible.
We would love to show you more, and to answer your many retirement-related questions, without cost or obligation. You’re cordially invited to join Rajiv Nagaich at a free LifePlanning Seminar, at a location that works for you. For a complete calendar of upcoming seminars, visit our Live Events page and sign up online (or give us a call this week). We’ll see y0u soon – and meanwhile, age on!
(originally reported at www.bbc.com)