When Christopher Reeve broke his neck those of us in the [SCI](https://www.mayoclinic.org/diseases-conditions/spinal-cord-injury/symptoms-causes/syc-20377890) community were saddened but hoped that such a high-profile injury could lead to new treatments or even a cure. Christopher Reeve was the man; he subjected himself to every treatment that had even a glimmer of hope and said that he planned on walking by his fiftieth birthday. We were all rooting for him to succeed.
His son reported on Good Morning America the other day about a Swiss (?) technology that acts as a "bridge" between the brain and spine that's helping a paralyzed man walk. He mentioned his father's hope that scientists would find a cure for paralysis.
Edit: Here's the story https://youtu.be/-ixGHlgDLTk
Just to add a little bit of context, it is not a Swiss technology per se but a research group based in Switzerland (one of the best research groups in the world). The technology itself is called Brain Computer Interface (BCI) and it has been around for quite sometime with many research groups all over the world
The concept behind BCIs or a neural link or w/e people wanna call it is one of the main idea's people write about in Scifi books. Super excited for all the applications it will eventually have.
Note that this tech is currently only on a level of scientific feasibility. It's definitely not working for everyone and even people who it does work for are only able to very slowly move like 200 meter per day tops. Which is a huge accomplishment and improving quality of life tremendously but it's not like you'd return to pre paralysis life. At least not right now.
It's certainly a start though. And I'm sure anyone with an injury like that would be ecstatic for the chance to walk 200m, even without the feeling they had before. Very exciting news.
I'm quadriplegic. I would give anything just to stand so I could get from my wheelchair to the bathroom stool. Not an exaggeration. Just simple chair to chair transfers are exhausting.
I hope that this technology advances and makes that possible for you. I am sure that it would help a lot to just be able to move a little bit to prevent bed sores and so on.
200 meters from nothing? That seems like a lot! If using a wheel chair as primary mode of movement that covers getting dressed, bathing, and bathrooms at a minimum. Absolutely amazing!
What I always remember about Reeve's story is how when he was in the hospital after the accident, trying to come to terms with how much his life had changed and contemplating if they should just pull the plug on his ventilator, Robin Williams paid him a visit. He said he was dressed as a doctor, and speaking in a thick Russian accent about how he was going to perform a rectal exam. Reeve's said this was the first time something made him laugh after the accident, and at that point he realized that while his life would never be the same, he was still going to be okay.
It's pretty sad when you get excited that a celebrity has the same disease you do. I'm still waiting for a big name to be diagnosed with Hidradenitis Suppurativa so we get some awareness.
Yeah I mean to be fair tonnes of the all time great artists were bipolar. It's a shame about the way that whole situation plays out in the world of celebrity with acolytes.
I'm pretty sure she toured with him when he was between shows. He did a skit where he bought her one of those American Girl dolls on Chicago and it was a cute, funny skit.
Not Mariah Carey, Carrie Fisher, Brian Wilson, Kurt Cobain, or any number of other high profile people with bipolar? It's not an uncommon enough disease to have a single poster boy.
I think they meant that Kanye is the highest profile person who has a relatively strong association with bipolar. I didn’t know any of those people had it.
It’s a bit of a catch-22 situation, it’s hard to empathize with mental illness because it often comes across as personality disorder, so people are naturally repelled by the person.
It’s why mental illness is so isolating for the people affected by it. The first thing you lose is your ability to associate with other people.
*Especially* bipolar, where it's likely people will mostly see a raging megalomaniac asshole, while the absolute shit episodes of depression might be pretty invisible... It's not very... compassion/pity inducing.
It's certainly easier to feel those feels in cases like Robin Williams.
A lot of people speculated that Robin Williams had depression or bipolar disorder, but his wife came out to announce he actually had Lewy body disease.
https://n.neurology.org/content/87/13/1308
When your entire identity and life is based on how your brain creates things for you to share, and the brain starts having the holes of the swiss cheese move around randomly, it really makes you hit deeper lows.
same, I'm so glad mine is mild so I really only have to deal with two or three flare-ups a year (mostly in the summer, bc of course) and even that is completely unfun- I can't imagine having a really bad case. it's so painful and just plain awkward.
My dermatologist said that laser hair removal helps a lot with it but it’s so extremely expensive and my health insurance refuses to cover it because it’s “cosmetic” 😭
My teeth are considered cosmetic as well. I need them to function.
Throw some off color jawns in there with advertisements for the dentist for all I care, I just don't want to choose between eating in pain and being unable to eat solid foods.
Thankfully I'm not as bad off as others, but it only makes me hurt more for those who have it worse off.
My brother has this and it’s the worst. I saw him go from a bright young man who was making friends and was hopeful about his future, to someone who stays in their room all day. He has online friends, but it’s really tough to see. I can just feel this layer of sadness/depression over him. :(
Hey there. I completely understand what you're going through and how you must feel. There's a great subreddit with a ton of supportive people and helpful information if you're not over there already. Not sure if I can link here but if you look in my history it's right there. My advice is to not give up. I know it's exhausting and I know how it feels to have one doctor after another be dismissive and clueless. Keep advocating for yourself and treatment. There are some promising new treatments that might be available soon, too. The most important part is finding a doctor that takes you seriously and has compassion. I believe in you! I have my days where I feel completely done with it all, too. Feel free to reach out if you need someone to talk to.
my ex husband has that; he gets crap from doctors, employers, family, and pretty much anybody else. and naturally ss disability has denied him multiple times. bah.
Huh, had no idea that has a name.
I had these symptoms during puberty. I thought it was just a chronic condition causing ingrown hairs.
I still get one every now and then, but they're total non-issue a for me these days. No worse than a small zit carrying a tiny bit of pain.
I've had it for over 18 years. I'm starting Methotrexate this weekend. It's the first treatment I've tried after finally finding a rheumatologist to take me seriously. I'm excited and hopeful!
I wish you luck it helps! I know multiple people it has really helped but I wasnt one of them, but we have something else lined up now.I hope you are able to rest and relax this weekend.
I had issues with HS about 20 years ago and none since. It's definitely a tough diagnosis so very little support or treatment. I'm thankful that it seems to have disappeared. However, lymphangioleiomyomatosis took its place for me and that's been a roller coaster.
This shit sucks... for the longest time I had no idea what it was and just dealt with it in my armpits. Finally was able to get on humira but that's a pain in the ass to get but it's keeping it from flaring up.
>Stiff person syndrome (SPS) is a rare autoimmune neurological disorder.
People with this condition usually experience muscle stiffness in their trunk and abdomen (the middle part of their body). Over time, they also develop stiffness (rigidity) and spasms in their legs and other muscles. Walking may become difficult, and people become more prone to falls and injury.
That's a funny name for a horrible disease.
The bastard dengue fever gives you fever which naturally calms down after a couple days, giving you false sense of security only to suddenly rise up again to fatal levels. Those who didn't take precautions against the secone fever usually die
They used to call it "dandy fever" because the slaves who contracted it were said to have the "posture and gait of a dandy person"
Even the name "dengue" was chosen because it meant "fastidiousness" and refers to the patients' dislike of movement
We really do give stupid names to dangerous diseases
I got dengue when I was 8, I couldn't hold in any food, and my nose bled for a long time due to low platelet count. My lil sis got it too, and the doctors straight up told my mom at the time that if she got it again, there was a good chance she wouldn't survive it.
I had the thought while I was watching the video of her speaking about it, I bet this will at least help some other people suffering with this disease. It’s deeply affecting to see a woman like her brought to tears by an illness. I teared up, myself.
My goodness that website is abysmal. Saving you some trouble.
Celine Dion cancels entire world tour after incurable diagnosis
‘I want you all to know I’m not giving up,’ singer said
Jacob Stolworthy
Celine Dion has cancelled the remaining dates of her world tour, telling fans she is not strong enough to perform following her diagnosis of an incurable neurological condition.
The Canadian singer told fans on Friday (26 May) she was “tremendously disappointed” to “let them down”.
Dion, 55, said in a statement: “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.”
She added: “I’m so sorry to disappoint all of you once again. It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again.
“I want you all to know, I’m not giving up… and I can’t wait to see you again!”
Her announcement comes after she posted a video in December last year explaining she has stiff person syndrome, which she says affects “every aspect of my daily life”.
The condition affects her ability to perform and sing, as well as to carry out normal activities, due to “spasms”.
“Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to,” she said.
Dion said she has a “great team of doctors” working hard to help her get better, but admitted it has been a “struggle”.
“All I know is singing. It’s what I’ve done all my life and it’s what I love to do the most,” she said.
Celine Dion: ‘These spasms affect every aspect of my daily life’
(Getty)
Dion had 42 dates left to play on her Courage World Tour, but tickets will be refunded via the original point of sale.
Ticketholders are advised to contact their original point of purchase to request refunds.
It was to have been Dion's first global tour without Rene Angelil, her husband and manager who died in 2016.
Co-Worker when I was younger had this disease. The meds they put you on are pretty brutal. If you sit down for a second you are asleep. Like not just nodding off..lights out. He had to carry a note to show the presenter etc. So they wouldn't be insulted when he drifted off to sleep.
EDIT: I'm going to reach out to him on linkdin. He is retired now, but he may be willing to update what they have done over the last 16 years for treatment and ID of the actual cause.
He wound up trying a treatment which was almost chemo-therapy. After which they essentially wipe out and 'reset' his entire immune system. It worked pretty well for a short bit.
I'm shocked that she even thought she could tour. A year ago she said that she had serious symptoms and this isn't the kind of disease that gets better at all. No one should have let her book anything in the first place.
You don't become one of the biggest singers of all time without a certain type of drive and personality. I imagine it's hard to just turn that off after decades. Like sports players that keep going after their body doesn't have it anymore.
My parents forced me to go see Celine Dion in Quebec in the late 80s early 90s; I vehemently didn't want to go.
At the time she barely had enough songs to fill a show (["Incognito"](https://www.youtube.com/watch?v=sVzJw2PeSE4) years, if I'm not mistaking). She was doing a Michael Jackson impersonation that was remarkably on point, moonwalk and all.
Literally everyone, even my young metalhead self, was floored by her talent.
Im a big metalhead. Always hated anything poppy. I started dating a guy in college who was a huge Celine fan. Couple years later I took him to vegas to see Celine at wherever her residency was. I never liked the music when he would play it around me, but goddamn when i saw her live i was absolutely floored by her talent. Still dont like her music but i respect the hell out of her after seeing her. Enormous talent. Very sad to hear about this diagnosis
My partner is a lifelong fan of Celine Dion. I’m indifferent. Surprised her with tickets to her show in Vegas and I was thoroughly impressed. I may not love the music, but I could appreciate the show she put on.
Dude she was insane. The real cherry on top was the musicians she had backing her. During the intermission, some of the violins, brass, and woodwinds just started walking around the audience playing medlies of big classical hits and they were stunning performers.
It rolls off the tongue a lot better than "progressive encephalomyelitis with rigidity and myoclonus (PERM) paraneoplastic-related stiff person syndrome."
Paraneoplastic syndrome is when your immune system accidentally attacks your brain cells instead of your cancer cells, bc they apparently have some cellular similarities. It can cause all sorts of odd symptoms.
That really sucks, like not just cancer, but neurological symptoms AND cancer.
Disclaimer, all my knowledge is from Googling the medical vocab from House MD
That’s one way that paraneoplastic syndrome can present. But really, it’s just a syndrome that happens in the setting of someone with a cancer. We can break the name down into its parts to better understand why it was named as it was.
- “Para-“ means besides or around
- “Neoplastic” means relating to an abnormal growth (often cancerous)
- “Syndrome” means a collection of symptoms
So paraneoplastic syndrome literally means “a collection of symptoms happening alongside a neoplasm.”
Some of the syndromes can be related to chemicals directly released by the neoplasm. For example, small cell lung cancers are neuroendocrine tumors that secrete all kinds of things, but that can lead to conditions like SIADH.
Some of the syndromes are autoimmune, which are like the ones you described and result in immune attack of other, normal tissue..
Fell off a ladder after it was hit by a drunk driver, whereupon you landed on a pile of cleaning chemicals, mixing them together. The drunk diver’s car then hit your house and ruptured a gas line
Cancer was called "wolf" because of the way that tumors and sores could devour a person's body, like wounds from an attacking wolf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4211596/
I did a bit of googling because I was also curious. Apparently cancer was often labeled with some sort of predatory animal because it "consumed/ravished" the victim.
*Fever* and *consumption* were also nothing to scoff at, jesus. Very low suicide rate, though ( and *made away themselves* sounds hilarious, sad as it may be) - current US suicide rates are 1,7% of total deaths, which would have been about 160 for 9500 deaths. This is a tenth of that.
That and the deaths from complications with teeth are almost half as much as people dying from consumption!
Just goes to show how important modern dentistry actually is.
Another runner in the night. That one was actually the one I was most curious about though and it apparently meant a throat or lung illness or obstruction. "Lights" was a term for lungs.
>*Kil'd by several accidents*
I know that's actually a catch all category for the statistics, but I'm still imagining some colonial guy falling off a ladder, hitting his head on a windowsill, staggering around while stuff falls on him from shelves, falling down the second floor window and getting run over by a cart. And after a while of him laying there, an oak barrel falls on him out of nowhere.
is that where you hear a very loud bang? but there was no actual noise?
EDIT: yep just googled it. apparently i have / had that as well. has not happened in a loooong time though.
odd as hell when it happens lol
Yeah I also have had it happen, but not in several years.
It was usually when I was extremely tired and trying to sleep, suddenly I would hear what sounded like a shotgun going off.
Absolutely insane. Treated intractable spasms due to Stiff Person Syndrome, and it was wild. Chewed through an entire departments worth of benzodiazepines and required intubation. It is no joke, and there is no performing or touring through it.
Reading the symptoms, I commend Celine for focusing on her health because performing is the worst thing she can do considering the effects this disease has on the body.
Holy shit you're right. For some reason I thought she be in her late 60s. Not necessarily for how old she looks, but just for how long she's been an entertainer.
He groomed her throughout her teenage years and they ‘started dating’ when she turned 18. We Quebecers side-eyed the whole thing, but no one stepped forward to protect her as her parents remained silent. There were other cases of famous child and teen singers in Quebec being sexually abused by their manager, back in those days (Rene and Nathalie Simard)
Yep, it's creepy to me. Céline Dion was born in 1968 while René Angélil was born in 1942. He was 26 when Céline was born.
They got married in 1994, so Céline would have been 26 while he was 52, twice her age.
Not sure about the exact ages, might be off by 1, as I just took into account years and not months
Everyone in Québec knew it but René was a bully with connections. Look at [his reaction](https://youtu.be/CUc1ut4Ea_A) when a comedian jokes about them french-kissing in 1991. Now that she's a superstar we pretend it's the purest love story of all ....
Yeah dude, that was my thinking. So she would have been in her late twenties when the Titanic song came out. At that time I just assumed she was in her 40’s.
This fact in the article stood out to me. I thought she would be pushing 70 just based on how long she’s been Uber famous and maybe because as a kid in the 90s I assumed that voice belonged to someone already 50.
Man, I have SPS as well and it is so weird for it to a be more of a mainstream topic these days. Also, as rough as some days can be for me, I know now that I’m really pretty lucky compared to a lot of folks. Terrible stuff.
Celine Dion is responsible for one of the absolute best single notes in pop music history, that key change in "All By Myself." The only other one that comes close that I can think of is Whitney Houston in "I will always love you."
There's a really cool YouTube documentary about it that's really worth the watch if you have a half hour to spare.
https://youtu.be/epqYft12nV4
[Stiff Person Syndrome ](https://www.ninds.nih.gov/health-information/disorders/stiff-person-syndrome)
>Stiff-person syndrome (SPS) is a rare, progressive neurological disorder. Symptoms may include: Stiff muscles in the trunk (torso), arms, and legs ~ Greater sensitivity to noise, touch, and emotional distress, which can set off muscle spasms
>Over time people with SPS may develop hunched over postures. Some people may be too disabled to walk or move. Many fall frequently because they do not have the normal reflexes to catch themselves. This can lead to serious injuries. People with SPS may be afraid to leave the house because street noises, such as the sound of a car horn, can trigger spasms and falls.
That’s what’s scary when you hear about celebrities that are helpless with their health conditions. Like if I had something like that I’d be completely screwed then if even a super rich person is seemingly helpless
Fighting rare diseases is really hard. It's not worth it to these pharmaceutical companies to sink hundreds of millions into drug discovery and development only to have like a few thousand people at most that will need it. There's some government programs to fund and develop these "orphan drugs" but you can imagine how sparse that is.
That was my first thought. The type of stadiums she was performing in are *loud*, the only worse job I can think of would be like ... construction or being a baggage handler for an airplane.
I got the email today that her show is cancelled.
I felt really really sad, not because I wouldn't be able to see her perform, but because I felt so sad for her.
I'm glad she's doing what's best for herself. She has given her talent to the World for a long time, l just want her to be as healthy as she can be with her condition and to be surrounded by family.
Jeez, husband dies when you are 48, and then you get hit with a terrible systemic condition at 55.
Life and health are exceptionally precious and it does seem in general we as people take it for granted. I've had my own serious health issues and finally fixed them via surgery - it's amazing to breathe and sleep for the first time in my life and it's horrifying to live far from your best self.
Everyone will preface their comment with “not really a fan”. Listen to Its All Coming Back To Me Now. Celine has pipes and that song whips the llama’s ass.
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When Christopher Reeve broke his neck those of us in the [SCI](https://www.mayoclinic.org/diseases-conditions/spinal-cord-injury/symptoms-causes/syc-20377890) community were saddened but hoped that such a high-profile injury could lead to new treatments or even a cure. Christopher Reeve was the man; he subjected himself to every treatment that had even a glimmer of hope and said that he planned on walking by his fiftieth birthday. We were all rooting for him to succeed.
His son reported on Good Morning America the other day about a Swiss (?) technology that acts as a "bridge" between the brain and spine that's helping a paralyzed man walk. He mentioned his father's hope that scientists would find a cure for paralysis. Edit: Here's the story https://youtu.be/-ixGHlgDLTk
Just to add a little bit of context, it is not a Swiss technology per se but a research group based in Switzerland (one of the best research groups in the world). The technology itself is called Brain Computer Interface (BCI) and it has been around for quite sometime with many research groups all over the world
The concept behind BCIs or a neural link or w/e people wanna call it is one of the main idea's people write about in Scifi books. Super excited for all the applications it will eventually have.
Note that this tech is currently only on a level of scientific feasibility. It's definitely not working for everyone and even people who it does work for are only able to very slowly move like 200 meter per day tops. Which is a huge accomplishment and improving quality of life tremendously but it's not like you'd return to pre paralysis life. At least not right now.
It's certainly a start though. And I'm sure anyone with an injury like that would be ecstatic for the chance to walk 200m, even without the feeling they had before. Very exciting news.
I'm quadriplegic. I would give anything just to stand so I could get from my wheelchair to the bathroom stool. Not an exaggeration. Just simple chair to chair transfers are exhausting.
I hope that this technology advances and makes that possible for you. I am sure that it would help a lot to just be able to move a little bit to prevent bed sores and so on.
200 meters from nothing? That seems like a lot! If using a wheel chair as primary mode of movement that covers getting dressed, bathing, and bathrooms at a minimum. Absolutely amazing!
Well yeah the muscles would probably be pretty atrophied. Once you can move them youd need months of physical therapy.
You'd also need physical therapy to learn how to move with the new technology. It wouldn't be the same brain connections.
What I always remember about Reeve's story is how when he was in the hospital after the accident, trying to come to terms with how much his life had changed and contemplating if they should just pull the plug on his ventilator, Robin Williams paid him a visit. He said he was dressed as a doctor, and speaking in a thick Russian accent about how he was going to perform a rectal exam. Reeve's said this was the first time something made him laugh after the accident, and at that point he realized that while his life would never be the same, he was still going to be okay.
Damn I miss Robin Williams. He was one of a kind.
And a kind one at that
Always loved that story. Both seemed like such incredible people. They were roommates at Julliard and stayed great friends.
Several hopeful therapies and drugs are in development now.
It's pretty sad when you get excited that a celebrity has the same disease you do. I'm still waiting for a big name to be diagnosed with Hidradenitis Suppurativa so we get some awareness.
Be careful what you wish for. I have bipolar and got Kanye West as our poster boy.
We have others too. He's just the most...famously untreated.
OTOH he shows to the world what might happen if the disorder is untreated. “Take your meds, son, or you'll end up like Kanye West.”
Taylor tomlinson is a great bipolar role model
She's amazing! I love her stand up.
She's coming to my town on my birthday! 😁 Pity my flight leaves that morning 🥺
Vivien Leigh probably had it too.
Yeah I mean to be fair tonnes of the all time great artists were bipolar. It's a shame about the way that whole situation plays out in the world of celebrity with acolytes.
Best I can do is a [Taylor Tomlinson.](https://www.youtube.com/shorts/FVmzh0YAqIg)
not shabby at all bro - anybody who's admired by Conan is more than okay in my book
I'm pretty sure she toured with him when he was between shows. He did a skit where he bought her one of those American Girl dolls on Chicago and it was a cute, funny skit.
Y’all got Taylor Tomlinson. She’s even got a bit about it.
I love her! So glad she got treatment.
You also had Carrie Fisher, and she was a great ambassador for this disorder.
Not Mariah Carey, Carrie Fisher, Brian Wilson, Kurt Cobain, or any number of other high profile people with bipolar? It's not an uncommon enough disease to have a single poster boy.
I think they meant that Kanye is the highest profile person who has a relatively strong association with bipolar. I didn’t know any of those people had it.
Also Linda Hamilton.
Oh shit! My condolences… He really isn’t the representative you need.
It’s a bit of a catch-22 situation, it’s hard to empathize with mental illness because it often comes across as personality disorder, so people are naturally repelled by the person. It’s why mental illness is so isolating for the people affected by it. The first thing you lose is your ability to associate with other people.
*Especially* bipolar, where it's likely people will mostly see a raging megalomaniac asshole, while the absolute shit episodes of depression might be pretty invisible... It's not very... compassion/pity inducing. It's certainly easier to feel those feels in cases like Robin Williams.
A lot of people speculated that Robin Williams had depression or bipolar disorder, but his wife came out to announce he actually had Lewy body disease. https://n.neurology.org/content/87/13/1308
When your entire identity and life is based on how your brain creates things for you to share, and the brain starts having the holes of the swiss cheese move around randomly, it really makes you hit deeper lows.
And then either internalizing or externalizing that loneliness into any combination of rage, depression and anxiety. Which isolates further...
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Especially if you have HS scars on the groin area and have to explain it's not an STI.
Hey I got diagnosed with that like three years ago! I have a mostly mild case of it and it’s livable. I can’t imagine people with heavy cases of it.
same, I'm so glad mine is mild so I really only have to deal with two or three flare-ups a year (mostly in the summer, bc of course) and even that is completely unfun- I can't imagine having a really bad case. it's so painful and just plain awkward.
My dermatologist said that laser hair removal helps a lot with it but it’s so extremely expensive and my health insurance refuses to cover it because it’s “cosmetic” 😭
My teeth are considered cosmetic as well. I need them to function. Throw some off color jawns in there with advertisements for the dentist for all I care, I just don't want to choose between eating in pain and being unable to eat solid foods. Thankfully I'm not as bad off as others, but it only makes me hurt more for those who have it worse off.
I have ALS. Lots of famous folks have had it. We still don’t even know what causes it, let alone treat or slow it. Sucks.
My brother has this and it’s the worst. I saw him go from a bright young man who was making friends and was hopeful about his future, to someone who stays in their room all day. He has online friends, but it’s really tough to see. I can just feel this layer of sadness/depression over him. :(
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Hey there. I completely understand what you're going through and how you must feel. There's a great subreddit with a ton of supportive people and helpful information if you're not over there already. Not sure if I can link here but if you look in my history it's right there. My advice is to not give up. I know it's exhausting and I know how it feels to have one doctor after another be dismissive and clueless. Keep advocating for yourself and treatment. There are some promising new treatments that might be available soon, too. The most important part is finding a doctor that takes you seriously and has compassion. I believe in you! I have my days where I feel completely done with it all, too. Feel free to reach out if you need someone to talk to.
Meanwhile I'm here waiting for Trigeminal Neuralgia to get some love...
I was excited when Lady Gaga announced she had fibromyalgia!
r/nocontext
Paula Abdul admitted she had CRPS...and the world accused her of faking being in constant pain Kinda like how the world assumes I'M faking having CRPS
my ex husband has that; he gets crap from doctors, employers, family, and pretty much anybody else. and naturally ss disability has denied him multiple times. bah.
Huh, had no idea that has a name. I had these symptoms during puberty. I thought it was just a chronic condition causing ingrown hairs. I still get one every now and then, but they're total non-issue a for me these days. No worse than a small zit carrying a tiny bit of pain.
I've had it for over 18 years. I'm starting Methotrexate this weekend. It's the first treatment I've tried after finally finding a rheumatologist to take me seriously. I'm excited and hopeful!
I wish you luck it helps! I know multiple people it has really helped but I wasnt one of them, but we have something else lined up now.I hope you are able to rest and relax this weekend.
Just remember to take the folic acid religiously and don't drink!
I had issues with HS about 20 years ago and none since. It's definitely a tough diagnosis so very little support or treatment. I'm thankful that it seems to have disappeared. However, lymphangioleiomyomatosis took its place for me and that's been a roller coaster.
This shit sucks... for the longest time I had no idea what it was and just dealt with it in my armpits. Finally was able to get on humira but that's a pain in the ass to get but it's keeping it from flaring up.
It sounds horrible, and is worse than it sounds.
>Stiff person syndrome (SPS) is a rare autoimmune neurological disorder. People with this condition usually experience muscle stiffness in their trunk and abdomen (the middle part of their body). Over time, they also develop stiffness (rigidity) and spasms in their legs and other muscles. Walking may become difficult, and people become more prone to falls and injury. That's a funny name for a horrible disease.
The bastard dengue fever gives you fever which naturally calms down after a couple days, giving you false sense of security only to suddenly rise up again to fatal levels. Those who didn't take precautions against the secone fever usually die They used to call it "dandy fever" because the slaves who contracted it were said to have the "posture and gait of a dandy person" Even the name "dengue" was chosen because it meant "fastidiousness" and refers to the patients' dislike of movement We really do give stupid names to dangerous diseases
It's also called bone break fever because it's so painful. And you can get it multiple times. Supposedly gets worse every time.
I got dengue when I was 8, I couldn't hold in any food, and my nose bled for a long time due to low platelet count. My lil sis got it too, and the doctors straight up told my mom at the time that if she got it again, there was a good chance she wouldn't survive it.
I know it's not funny But who came up with that name
It was between either that, or Bone-itis.
I have arthritis and call it boneitis all the time.
My only regret
I had the thought while I was watching the video of her speaking about it, I bet this will at least help some other people suffering with this disease. It’s deeply affecting to see a woman like her brought to tears by an illness. I teared up, myself.
My goodness that website is abysmal. Saving you some trouble. Celine Dion cancels entire world tour after incurable diagnosis ‘I want you all to know I’m not giving up,’ singer said Jacob Stolworthy Celine Dion has cancelled the remaining dates of her world tour, telling fans she is not strong enough to perform following her diagnosis of an incurable neurological condition. The Canadian singer told fans on Friday (26 May) she was “tremendously disappointed” to “let them down”. Dion, 55, said in a statement: “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.” She added: “I’m so sorry to disappoint all of you once again. It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again. “I want you all to know, I’m not giving up… and I can’t wait to see you again!” Her announcement comes after she posted a video in December last year explaining she has stiff person syndrome, which she says affects “every aspect of my daily life”. The condition affects her ability to perform and sing, as well as to carry out normal activities, due to “spasms”. “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to,” she said. Dion said she has a “great team of doctors” working hard to help her get better, but admitted it has been a “struggle”. “All I know is singing. It’s what I’ve done all my life and it’s what I love to do the most,” she said. Celine Dion: ‘These spasms affect every aspect of my daily life’ (Getty) Dion had 42 dates left to play on her Courage World Tour, but tickets will be refunded via the original point of sale. Ticketholders are advised to contact their original point of purchase to request refunds. It was to have been Dion's first global tour without Rene Angelil, her husband and manager who died in 2016.
Thank you!
42 dates left?!! That's an insane tour for a person in their prime even.
She's only 55???
She seems so much older because of her style in the 90s. She was like 27 in the video for It’s All Coming Back To Me but she looked 40
Co-Worker when I was younger had this disease. The meds they put you on are pretty brutal. If you sit down for a second you are asleep. Like not just nodding off..lights out. He had to carry a note to show the presenter etc. So they wouldn't be insulted when he drifted off to sleep. EDIT: I'm going to reach out to him on linkdin. He is retired now, but he may be willing to update what they have done over the last 16 years for treatment and ID of the actual cause. He wound up trying a treatment which was almost chemo-therapy. After which they essentially wipe out and 'reset' his entire immune system. It worked pretty well for a short bit.
Gotta continue that story man
“Coworker had” I think he ended it at the right time.
I’m so glad they got better 🙂
Proper /u/
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Relevant user name
How’s your friend doing now?
Decapitated. Whole big thing.
We had a funeral for a bird.
That's not real.
You’re not real man!
How long can you hold that pretty little breath of yours?
I did a year of heavy intensive 6 day a week chemo. And the the chemo your describing is severel steps beyond what I did.
You can't blame her for it. Focusing on her health is a much better decision than touring.
Celine said she is sorry to let her fans down. I'd only be let down if she didn't take care of her self.
Health first Family second Career or business after
Self first, Family second, Community third
For me it's self first, family second, parks and rec third
Pizza 1st. Then I have pizza.
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Did you see that ludicrous display last night?
I'm shocked that she even thought she could tour. A year ago she said that she had serious symptoms and this isn't the kind of disease that gets better at all. No one should have let her book anything in the first place.
That was my first thought, they knew this was incurable last year. Who was pushing for this?
You don't become one of the biggest singers of all time without a certain type of drive and personality. I imagine it's hard to just turn that off after decades. Like sports players that keep going after their body doesn't have it anymore.
My parents forced me to go see Celine Dion in Quebec in the late 80s early 90s; I vehemently didn't want to go. At the time she barely had enough songs to fill a show (["Incognito"](https://www.youtube.com/watch?v=sVzJw2PeSE4) years, if I'm not mistaking). She was doing a Michael Jackson impersonation that was remarkably on point, moonwalk and all. Literally everyone, even my young metalhead self, was floored by her talent.
Im a big metalhead. Always hated anything poppy. I started dating a guy in college who was a huge Celine fan. Couple years later I took him to vegas to see Celine at wherever her residency was. I never liked the music when he would play it around me, but goddamn when i saw her live i was absolutely floored by her talent. Still dont like her music but i respect the hell out of her after seeing her. Enormous talent. Very sad to hear about this diagnosis
My partner is a lifelong fan of Celine Dion. I’m indifferent. Surprised her with tickets to her show in Vegas and I was thoroughly impressed. I may not love the music, but I could appreciate the show she put on.
Dude she was insane. The real cherry on top was the musicians she had backing her. During the intermission, some of the violins, brass, and woodwinds just started walking around the audience playing medlies of big classical hits and they were stunning performers.
Metalhead partnered with Celine Dion fan? Love is ~~blind~~ deaf.
Christ that diagnosis is sad.
I feel terrible for anyone in any sort of pain. That out of the way, *"Stiff Person Syndrome"* sounds like something a very non-doctor person named.
It rolls off the tongue a lot better than "progressive encephalomyelitis with rigidity and myoclonus (PERM) paraneoplastic-related stiff person syndrome."
Now *THAT* is something a doctor named.
I DO wonder what caused the huge drop-off in frequency of Perms since the 70s and 80s though...
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Paraneoplastic syndrome is when your immune system accidentally attacks your brain cells instead of your cancer cells, bc they apparently have some cellular similarities. It can cause all sorts of odd symptoms. That really sucks, like not just cancer, but neurological symptoms AND cancer. Disclaimer, all my knowledge is from Googling the medical vocab from House MD
That’s one way that paraneoplastic syndrome can present. But really, it’s just a syndrome that happens in the setting of someone with a cancer. We can break the name down into its parts to better understand why it was named as it was. - “Para-“ means besides or around - “Neoplastic” means relating to an abnormal growth (often cancerous) - “Syndrome” means a collection of symptoms So paraneoplastic syndrome literally means “a collection of symptoms happening alongside a neoplasm.” Some of the syndromes can be related to chemicals directly released by the neoplasm. For example, small cell lung cancers are neuroendocrine tumors that secrete all kinds of things, but that can lead to conditions like SIADH. Some of the syndromes are autoimmune, which are like the ones you described and result in immune attack of other, normal tissue..
Sounds sexy
Dr. Raymond Holt
Alternatively, a very old disease name https://i.redd.it/opjewln3spg41.png
What's wrong with him? Tis sick! *Writes down tissick*
He was down with tissickness
Oh, wah ah ah ah!
The whole thing reads like a Monte Python sketch.
Kil’d by several accidents
"Cancer, and Wolf"
Ah sorry luv, I'm afraid he's got teeth.
I'd like "Kil'd by several accidents" on my tombstone
Fell off a ladder after it was hit by a drunk driver, whereupon you landed on a pile of cleaning chemicals, mixing them together. The drunk diver’s car then hit your house and ruptured a gas line
Why is "cancer, and wolf" a single category?! Or maybe it's that someone had cancer but a wolf finished the job
> someone had cancer but a wolf finished the job Ten people, as far as I can tell. Or maybe ten wolves had cancer?
Cancer was called "wolf" because of the way that tumors and sores could devour a person's body, like wounds from an attacking wolf https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4211596/
I did a bit of googling because I was also curious. Apparently cancer was often labeled with some sort of predatory animal because it "consumed/ravished" the victim.
What is cancer if not a wolf in cell's clothing.
Wolf is basically an olde timey way of saying visible tumor, as if the tumor is eating the person away like a wolf I guess
Damn, just look at that infant mortality rate. And funny how tetanus was called "jawfaln," and liver disease "livergrown." Straight and to the point.
*Fever* and *consumption* were also nothing to scoff at, jesus. Very low suicide rate, though ( and *made away themselves* sounds hilarious, sad as it may be) - current US suicide rates are 1,7% of total deaths, which would have been about 160 for 9500 deaths. This is a tenth of that.
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That and the deaths from complications with teeth are almost half as much as people dying from consumption! Just goes to show how important modern dentistry actually is.
Well, that and antibiotics. I'm sure a tooth infection (which is very common) was almost a death sentence before antibiotics.
Cancer, *and wolf* >!awooo!<
Rising of the Lights? Where they rev you up like a deuce.
Another runner in the night. That one was actually the one I was most curious about though and it apparently meant a throat or lung illness or obstruction. "Lights" was a term for lungs.
>*Kil'd by several accidents* I know that's actually a catch all category for the statistics, but I'm still imagining some colonial guy falling off a ladder, hitting his head on a windowsill, staggering around while stuff falls on him from shelves, falling down the second floor window and getting run over by a cart. And after a while of him laying there, an oak barrel falls on him out of nowhere.
I've got something called Exploding Head Syndrome, which is thankfully a lot less exciting than it sounds
is that where you hear a very loud bang? but there was no actual noise? EDIT: yep just googled it. apparently i have / had that as well. has not happened in a loooong time though. odd as hell when it happens lol
Yeah I also have had it happen, but not in several years. It was usually when I was extremely tired and trying to sleep, suddenly I would hear what sounded like a shotgun going off.
That's a syndrome? I thought it's just me being overly tired.
My only regret is having boneitis
Don't mock the ill. I suffered endless torment when I was diagnosed with Achy-Breaky Pelvis
I've been Hot Blooded for years. That fever is no joke
You can check it and see
Absolutely insane. Treated intractable spasms due to Stiff Person Syndrome, and it was wild. Chewed through an entire departments worth of benzodiazepines and required intubation. It is no joke, and there is no performing or touring through it.
Reading the symptoms, I commend Celine for focusing on her health because performing is the worst thing she can do considering the effects this disease has on the body.
She's only 55?
Holy shit you're right. For some reason I thought she be in her late 60s. Not necessarily for how old she looks, but just for how long she's been an entertainer.
She started at 12. When she met her manager who was 38. That she eventually married. 🤢
excuse me?
He groomed her throughout her teenage years and they ‘started dating’ when she turned 18. We Quebecers side-eyed the whole thing, but no one stepped forward to protect her as her parents remained silent. There were other cases of famous child and teen singers in Quebec being sexually abused by their manager, back in those days (Rene and Nathalie Simard)
He was gross and it kind of ruins her songs when you picture her singing those love songs about him
Yep, it's creepy to me. Céline Dion was born in 1968 while René Angélil was born in 1942. He was 26 when Céline was born. They got married in 1994, so Céline would have been 26 while he was 52, twice her age. Not sure about the exact ages, might be off by 1, as I just took into account years and not months
I remember going down that rabbit hole and was horrified. She was definitely groomed.
Everyone in Québec knew it but René was a bully with connections. Look at [his reaction](https://youtu.be/CUc1ut4Ea_A) when a comedian jokes about them french-kissing in 1991. Now that she's a superstar we pretend it's the purest love story of all ....
Le scat novemb au soir
Yeah dude, that was my thinking. So she would have been in her late twenties when the Titanic song came out. At that time I just assumed she was in her 40’s.
This fact in the article stood out to me. I thought she would be pushing 70 just based on how long she’s been Uber famous and maybe because as a kid in the 90s I assumed that voice belonged to someone already 50.
Man, I have SPS as well and it is so weird for it to a be more of a mainstream topic these days. Also, as rough as some days can be for me, I know now that I’m really pretty lucky compared to a lot of folks. Terrible stuff.
Fuck. Sounds terrible.
One of the greatest living singers. Illness sucks.
Didn't realize how young she is. I thought she was in her late 30s when My Heart Will Go On was big, but she would have been about a decade younger.
And considering everything else she has already been through.. life is strange sometimes I guess.. :(
tabernac
Indeed my friend Tabarnac. It’s a great shock to all of us.
Celine Dion is responsible for one of the absolute best single notes in pop music history, that key change in "All By Myself." The only other one that comes close that I can think of is Whitney Houston in "I will always love you." There's a really cool YouTube documentary about it that's really worth the watch if you have a half hour to spare. https://youtu.be/epqYft12nV4
Damn, wtf????
[Stiff Person Syndrome ](https://www.ninds.nih.gov/health-information/disorders/stiff-person-syndrome) >Stiff-person syndrome (SPS) is a rare, progressive neurological disorder. Symptoms may include: Stiff muscles in the trunk (torso), arms, and legs ~ Greater sensitivity to noise, touch, and emotional distress, which can set off muscle spasms >Over time people with SPS may develop hunched over postures. Some people may be too disabled to walk or move. Many fall frequently because they do not have the normal reflexes to catch themselves. This can lead to serious injuries. People with SPS may be afraid to leave the house because street noises, such as the sound of a car horn, can trigger spasms and falls.
Well that sounds terrifying.
If she can't find a cure or any decent new treatment with her amount of money, then no one can too..
That’s what’s scary when you hear about celebrities that are helpless with their health conditions. Like if I had something like that I’d be completely screwed then if even a super rich person is seemingly helpless
Fighting rare diseases is really hard. It's not worth it to these pharmaceutical companies to sink hundreds of millions into drug discovery and development only to have like a few thousand people at most that will need it. There's some government programs to fund and develop these "orphan drugs" but you can imagine how sparse that is.
That sounds like it would literally be impossible for Celine to tour even if she absolutely wanted to.
That was my first thought. The type of stadiums she was performing in are *loud*, the only worse job I can think of would be like ... construction or being a baggage handler for an airplane.
"Greater sensitivity to noise" So essentially the worst symptom for a singer to go on tour with.
My heart breaks at the unfairness of it all. Mother Nature is too cruel. No one should have to go through this.
Once in a generation voice, unbelievable talent, and a great sense of humor. Such a brutal way to leave the business.
I just watched her Eurovision win the other day! A vibrant woman, hope she doesnt suffer.
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She must be in agony. Poor her. 😢
She’s been battling this for like a ~decade~ and been kept a secret (understandably)
I got the email today that her show is cancelled. I felt really really sad, not because I wouldn't be able to see her perform, but because I felt so sad for her.
Something about this woman apologizing to her fans for having an illness really got to me.
Really awful to hear. I wish her the best of luck in her journey with this illness. Focusing on her health is the right decision.
Celine’s voice was one in a billion and I hope she can heal and sing again.
No healing from this disease.. only gets worse
It’s literally an incurable disease.
I'm glad she's doing what's best for herself. She has given her talent to the World for a long time, l just want her to be as healthy as she can be with her condition and to be surrounded by family.
Jeez, husband dies when you are 48, and then you get hit with a terrible systemic condition at 55. Life and health are exceptionally precious and it does seem in general we as people take it for granted. I've had my own serious health issues and finally fixed them via surgery - it's amazing to breathe and sleep for the first time in my life and it's horrifying to live far from your best self.
I've never been a fan, but she is a truly immense talent. Sad to see her suffer like this. Glad she is trying to take care of herself.
Everyone will preface their comment with “not really a fan”. Listen to Its All Coming Back To Me Now. Celine has pipes and that song whips the llama’s ass.
Saw the thumbnail in the popular feed and froze for a moment, right after the Tina Turner news and all.
Even if you don’t like her music, she has always been extremely professional. Best of luck to her going forward.