I didn’t know anything about NPH until I read this article about Billy Joel’s diagnosis. I’m so sorry for him to be going through this - but I’m also wondering how it’s differentiated from dementia in practice. I can imagine a lot of people could have it but are misdiagnosed. If it can sometimes be cured, it seems like a missed opportunity if it’s not properly diagnosed. Does anyone have experience with NPH?
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Billy Joel is my all-time favorite musician. Glad I got to see him in concert last year!
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This news makes me sad. I have long been a fan and have had the privilege of seeing of seeing him in concert.
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My father had NPH. My mother was convinced that he had Alzheimer’s and talked the doctor into giving him Aricept. I believed that he had run-of-the-mill, age-related dementia and didn’t need that medication, and neither did he.
The NPH diagnosis came after he had a fall while alone away from home. He didn’t tell anyone for a couple of days. He definitely had the shuffling feet issue, which likely is why he fell. He only told us something was up when a couple days after the fall his behavior was odd and my mom and sister freaked and got him to the ER, I think. He just froze midstep. They thought that he was having a stroke. Anyway, eventually a neurologist diagnosed him with NPH and implanted a shunt in his brain. The shunt takes some follow-up and fine-tuning to get the flow right, but that plus rehab really improved his quality of life. This was a great excuse to take away the car keys – after the fall that he told no one about, it took him two hours to drive himself home from a place that was about 10 minutes away.
I knew about NPH vaguely because of a commercial I had seen. I’ve linked it below. My dad didn’t improve to the point of this guy, but his shuffle definitely got better.
I definitely think it’s something to look out for. I’m glad I have familiarity with it so that I can ask a doctor to look at it for loved ones who present with those symptoms.
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NPH is very treatable. They usually just put in a V-P shunt.
It’s pretty easily diagnosed with a scan. They will see the enlarged ventricles.
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My friend was diagnosed with “normal hydrocephalus and has trouble with balance and keeping the right amount of fluid (has had to get the brain shunt adjusted several times. She gets continuous splitting headaches when the pressure from the fluid via brain shut is “off.” They have annual meetings about hydrocephalus that she has found helpful and supportive. She now uses a cane regularly to minimize falls.
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My fil had NPH. It did take awhile to diagnose. My mil thought he had Parkinson’s. Had the shunt put in and was having marked improvement with his shuffling/stability. They did a diagnostic test ahead of time to make sure the shunt would help him. It was obvious it would.
Unfortunately, he did not get up and move around much at all after his surgery as he had been instructed to do. Preferred lolling in the bed. Died from a pulmonary embolism about six weeks after the surgery. Really unfortunate
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One of the awful things about NPH is the frequency of brain shunt failure—they fail fairly often and then they need to be adjusted and that’s not great for patients.
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I have a friend in her 40s with it. She’s had since her 20s I think. She has the shunt. Found that going gluten free really helps her with inflammation. She has plenty of energy and doesn’t shuffle. She gardens, drives (mom taxi), teaches, does all the things.
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Billy Joel is 76 with a new diagnosis. I don’t blame him for not wanting to start a new tour that he’d have to rehearse and prepare for while deciding on what medical treatment to start, to getting medications adjusted if he decides on that route, to spending a year traveling.
I know he loves to perform, but really this is a lot to take on. Why not hang out with your family or if you want to perform, do it at a nice Las Vegas residency where you can sleep in your own bed every night? If he’s adjusted in a year, go on tour then.
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My mother had a brain tumor described to us as the kind that causes hydrocephalus in children. She had successful surgery in 1976 and then radiation. Friends with some medical background said she may have been overradiated. She weakened over the next years until she died in 1983. She was 63 years old.
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Hmmm, my friend said her treatment option was the brain shunt—no radiation. It mostly seems to have helped but she needs to walk with a cane—previously was pretty steady on her feet.
My mom had at least one shunt as well.