When John Searle began to fall and lose his memory, he thought they were the first signs of dementia. But it turns out he has a rare – and often undiagnosed – condition called normal pressure hydrocephalus. The good news is that it is treatable.
A few years ago, John Searle thought about his life knowing that it was over.
His body had slowly stopped working. He had trouble walking, he was falling, he had a bad short-term memory and, at 69, he was incontinent.
It was a model of decline that Brantford's retired Canadian engineer, Ontario, knew all too well. His sister had died of Alzheimer's in his 50s. His father had died of dementia in his early years & # 39; 80. So he started planning a future he could not attend.
"You wonder where you're going. You start thinking, don't you?" he says.
The doctors could not give him a definitive diagnosis, which only infuriated the retired engineer the most. The treatment of Parkinson's had no effect, it had no Alzheimer's but clearly something was wrong. By 2018, he needed a wheelchair to get out and a walker inside his home.
"There was no hope, I was sitting at the window watching the life go by."
"He was angry – he was extremely angry," says his wife Barbara. "There were nights when I lay in bed thinking that maybe I should sell the house … because I had to do everything."
But it changed when he met Dr. Alfonso Fasano, a neurologist at the Clinic for Movement Disorders at the Toronto Western Hospital, who diagnosed him with a condition called hydrocephalus at normal pressure or NPH.
The disorder is caused when excess cerebrospinal fluid accumulates in the ventricles of the brain, which are the communication center of the mind.
This accumulation of fluids can cause movement difficulties, memory problems and cognition and incontinence, symptoms that are often associated with more common degenerative diseases, such as Alzheimer's, Parkinson's or dementia.
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Hydrocephalus Canada estimates that at least 1 in 200 Canadians over the age of 55, or more than 57,000 people, have NPH. In the United States, the Hydrocephalus Association estimates that 700,000 Americans are afflicted, but that only about 20% of people living with this condition have been properly diagnosed.
"NPH is a condition that is not yet well understood," says Dr. Fasano. Untreated, people can end up in a nursing home or die from complications. "This is what we don't want to see, people have simply liquidated," he says.
Mr. Searle first heard of NPH when he saw a specialist in the treatment of migraine in 2003. An MRI revealed some fluid in the ventricles of his brain, but since he had no none of the telltale symptoms were diagnosed.
In 2014, after several years of symptoms such as memory loss and mobility difficulties, doctors made a lumbar puncture to drain some fluid from the brain to see if its symptoms improved, a common test for 39; NPH.
Because Mr. Searle's symptoms have not improved, his doctors have determined that the NPH should not be the culprit.
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Eight years later, with his rapid healthy deterioration, he met Dr. Fasano and agreed to try the test again.
This time, his wife Barbara noticed small improvements – so small that not even her husband noticed them.
"He wouldn't believe it," he said. "It was almost like & # 39; if I believe it and they are wrong, it will be too big a disappointment & # 39;".
Dr. Fasano suggested inserting a shunt into his brain to drain the fluid, the first-line treatment for NPH, with a high success rate according to recent studies.
More than a year later, and Mr. Searle says he is starting to recover his life. His gait has improved as well as his memory. He trains regularly with a personal trainer in the gym and walks to help strengthen his strength.
"The operation is only 50%, the rest is your mindset," he says.
Although he does not have a driver's license yet, Mr. Searle and his wife started traveling again. They went to Florida last winter and are planning trips to Las Vegas and Jamaica.
Barbara says the biggest change is her husband's mood:
"The apathy that afflicted him has disappeared. It is his cheerful ego again."
Dr. Fasano states that since Mr. Searle's story was shared with the media, the clinic has been overwhelmed by requests from patients who believe they have been misdiagnosed and who have NPH.
Although the misdiagnosis of NPH is a very real problem, Dr. Fasano warns that most people who have been diagnosed with Parkinson's or Alzheimer's have the correct diagnosis, especially if they have been seen by a neurologist.
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According to a recent Japanese study, up to 3% of the population over the age of 65 may have NPH. The World Health Organization estimates that dementia, including Alzheimer's, affects between 5-8% of the population over the age of 60.
"This is a disease that is probably more common than we think, and this is a disease that can be treated very well, with a huge change in the quality of life for these people," says the doctor.
"At the same time, people now believe that if they have Parkinson's, they have been misdiagnosed.
"Everyone hopes the doctor made a mistake."