The singer canceled his summer tour dates and revealed he has a brain condition called normal pressure hydrocephalus. It's treatable but tricky to diagnose, doctors say.
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The problem is our healthcare system keeps providers from taking the time to diagnose difficult cases. We need universal healthcare and get profit out of it.
I have actually been present for the surgical fix of this issue in a former partner. Once on Medicaid and then again after the Medicare activated. (Cancer choked off the first shunt).
Both covered. But that was before when the ACA was still fully functional. And it was in Massachusetts.
Your point stands but I will say the person I know who had this was a low income woman on Medicare. It takes family members willing to push for more testing and trying to get in to see dementia specialists who can recognize types of dementia based on behaviors.
You should read the article. Its not a problem of having advocates or a problem with the healthcare system. It's an issue that it overlaps with normal aging. From the article: "Doctors who spoke with NPR said they haven't had difficulty getting insurance to pay for the testing.".
In the person I know who had it, it initially seemed like some very minor strokes, so you go through those tests first, then other stuff, then take a break, etc. Then you're like, he's almost 80, maybe he's just struggling. His knee has been bothering him for years so maybe its just strength there..
This take is a clinical dodge pretending to be insight. The issue isn't just overlap with aging—it’s how that overlap excuses diagnostic delay unless someone has wealth, persistence, or backup.
Diagnostic delay has nothing to do with wealth. Its that they go through GP tests for more common ailments first before referring to a neurologist, and neurologists are booked months ahead. And they don't want to do spinal taps until they're pretty sure of the cause instead of guessing.
Funny you say that because, while they aren’t a government program, there are places that will help people (the ones I know were through Livestrong and were specific to cancer patients). They aren’t enough but they’re better than nothing
Usually these are cancelled because of some contract disagreement, and a health scare is an easy way out. But it sounds like he has the real deal. All the best to Billy and his family.
No they're not. Concerts are virtually NEVER canceled for a contract disagreement. They're all pretty standard touring contracts and venues would not rebook the performer.
When concerts are canceled, its always either low ticket sales or actual voice or health issues.
Saw a different kind of hydrocephalus in action in my caregiving time. The cognitive effects it can cause can be straight up terrifying.
Saw someone go from reasonably sane to peeing in a dog bed and going to bed in a bath tub bc he thought they were a toilet and a bed. Took less than 48 hours.
I actually know someone who had this. Her cognitive decline was bizarre. Fortunately she was properly diagnosed and the shunt helped her symptoms enormously. She went from having no idea who I was to laughing about old memories.
Dude. I am pretty sure I follow you but imma make sure. I saw this exact dynamic in my former partner. It wasn’t this kind of hydrocephalus, it was a blockage of the spinal fluid natural drain process by a tumor.
Shunt fixed it until the tumor grew back and choked it. Second shunt is better.
But yeah, he went from coherent and stable with TBI from the cancer to not being capable of cognitively differentiating a bathtub from a Queen sized bed. Or a dog bed from a toilet. Few lucid moments, all spent preparing me for his own death.
It worked out as best as it could for him in the end, but holy crap seeing that happen to a person in under 48 hours is terrifying and surreal. If I had waited 96 hours or even 72, he’d have died.
It’s a good reminder for anyone that sudden cognitive decline is usually a severe medical emergency.
Then again, I usually get a good reminder of why I don’t bother talking to most people about this story outside of circumstances like this.
Because the last thing any of them want to hear is stuff I know because I was the medical proxy during those emergencies. Demoralizing American nonsense, lol
The person I was referring to was a close family friend. From my perspective her decline was slow but I did not see her every day. Most were ready to write her off but her boyfriend at the time took one last shot and took her to the University of Utah where the diagnosed her a put the shunt it.
UU has a great hospital system I hear! What I find interesting is that it was a slow burn condition. Because in our case it was a sudden onset emergency.
So I can see how hard NPH would be to identify when it builds up slowly.
I saw the change starkly because it was nearly instantaneous.
Her response was remarkable. One unfortunate outcome was that once she was coherent she figured out the boyfriend had been ripping her off, even having the home her mother left her switched to his name. Her son ended up having to come rescue her from that situation.
Seeing him sing this live is pretty much my biggest musical bucket list item. I hope (for his sake, but also mine) that he recovers and can return to touring.
My husband was diagnosed with NPH at age 66 when he could not stop when he was walking or jogging without purposefully falling on the ground. Had the lumber puncture done and improved immediately. Shunt placed and has been working beautifully for 15 years.
Yup. NPH detected early can be pretty much cured with a routine relatively minor surgery. What a world we live in where I can say "minor brain surgery" and mean it.
Yup. That was a person who came from Los Angeles and the care team had given up. So I will always sing the praises of @brighamandwomens.bsky.social and @danafarber.bsky.social
Was extra fun doing that in a pandemic amid bomb threats from fans of TikTok famous Upstate NY Nazis lol
There is no cure and only one option for managing the condition. The shunt helps to drain the fluid but doesn’t help all patients. Within two years my husband went from Popeye to a frail,sick old man at 61. Some have good outcomes,many more do not. Hoping for the best for Mr.Joel.
You're right. If the blockage is due to a transient mechanical issue caught early shunts are as good as cures. When the blockage is the result of other processes, outcomes are much more uncertain. Here's wishing peace for you and your husband and a good outcome for the piano man.
Thanks for the kind words.We discovered his NPH via a scan for a neck lump. Grateful for the lump that was nothing because so many things made sense after diagnosis. All the best to you and yours.💐
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But what if he’d been on Medicaid?
Both covered. But that was before when the ACA was still fully functional. And it was in Massachusetts.
Good luck Piano Man!
This take is a clinical dodge pretending to be insight. The issue isn't just overlap with aging—it’s how that overlap excuses diagnostic delay unless someone has wealth, persistence, or backup.
When concerts are canceled, its always either low ticket sales or actual voice or health issues.
I am glad he is getting help
Saw someone go from reasonably sane to peeing in a dog bed and going to bed in a bath tub bc he thought they were a toilet and a bed. Took less than 48 hours.
Shunt fixed it until the tumor grew back and choked it. Second shunt is better.
Then woosh, right back to dementia level decline.
It’s a good reminder for anyone that sudden cognitive decline is usually a severe medical emergency.
Because the last thing any of them want to hear is stuff I know because I was the medical proxy during those emergencies. Demoralizing American nonsense, lol
So I can see how hard NPH would be to identify when it builds up slowly.
I saw the change starkly because it was nearly instantaneous.
The effects on him were not minor but the surgery itself was definitely routine, as much as it can be on an emergency basis.
I am glad we went to Brigham and Women’s Hospital. ❤️🫡
Was extra fun doing that in a pandemic amid bomb threats from fans of TikTok famous Upstate NY Nazis lol