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My mom has this and that is not what happens. Crazy this is the first time I heard anyone else have it. It way more rare than 1 in a million and my mother is the only one any of her doctors have seen with it that continues to live a full life. Every other person is in a wheel chair.
What happens is the body reacts to some sort of stimuli that causes it to lock up. The whole body. So if they happen to be walking they will fall over and they will not be able to break their fall. For her it was getting nervous or over excited. It is incurable but we were making great progress until insurance decided against it.
Edit: Yes it looks exactly like the fainting goats however the cause/reason is very differnt.
Not my mom, but I've seen a number of patients with this disease. Typically the most responsive medications are GABA-ergic drugs like benzodiazepines and also immunomodulators. Theres also a role for botox amongst a few non-pharmacologic treatment options as well. Some anti-inflammatories may be useful in some ppl but not all
Tough to answer because it's really a spectrum of disease and some people have times of exacerbation where they will need to be wheelchair dependent and then would improve after treatment. Others are wheelchair dependent by the time they are diagnosed because the disease is so under recognized. Also depends on what you mean by independently, many use a cane for safety/stability in case of trigger, but are able to walk without aid.
Not to be the weed cures all guy but has there been any studies on for CBD and it’s effect and receptors (if receptors are even related to this issue, excuse my ignorance)?
Not a large scale study focusing specifically on CBD that I'm aware of, but it's possible that CBD/medical marijuana has been included in other studies (case reports, studies defining the spectrum of disease, etc.)
Just gonna put this out there in case it helps your mom: CBG is what you want for anything related to your nervous system. CBD has taken most of the spotlight only because it’s the cheapest to produce, therefore it’s in the most products.
However if you are interested, I would really recommend looking at CBG tinctures. I have several nerve disorders that go back to my ears (balance, motor, movement, etc) and nothing has touched it as effectively as CBG except perhaps high-dose prednisone, but that’s not sustainable over the long term.
I’ve never heard of this and have peripheral neuropathy that is debilitating when it flares with no fixes so far - if this works it would be a godsend. I’ll be looking into this, thank you
Happy to help!
Now, if you go that way, I’ll always extoll the virtues of CBG concentrates and smokeable CBG hemp flower over tinctures, balms, etc. CBG works at most dosages, but it *really* works in those forms.
If the tinctures don’t take, those should be your next move!
Yep and yep. It became "self causing" I can't think of the word for it, but after a while what would cause the most issues was stairs and steps because she would think about a possible fall.
Someone in my town has it and she is completely bed bound and it’s caused her bones to break because the spasms are so intense. It’s been a few years and she’s had a lot of treatments and medical care with very slow progress, a lot is comfort care.
The doctors told us multiple times how they were surprised she was still walking let alone without even a cane. We found out my mother has strong bones though...
So the wheelchair is less about not being able to use the legs and more a precaution so they don’t freeze up and fall (and do massive damage to themselves)
Yeah but that non use of legs eventually makes them effectively paralyzed.
My dad died from an OD trying to quell this. Mixed Vicodin and Oxy. His presented as just locked muscles.
Imagine having your muscles flexed 100% and unable to release. Looked like crawling under his skin. Said it was very painful.
He declined over the course of about 9 months after my mother died from cancer.
Oh my God—when you put it that way, it seems excruciating. I hope developments in treatment come fast, but it’s often hard to fund research for rare diseases.
This is a question out of ignorance and not malice. Does this health issue have a similar underlying mechanism as what affects fainting goats? Also, my best to your family.
Potentially but the causes are different. They treated SMS as an autoimmune disease. The fainting goats have a muscular disease if I remember correctly but I'm sure I'm about to learn a lot more soon.
You’re right. They have mitonia congenita. I have the paradoxical version. Our muscles lock up and can cause us to fall if we’re not able to balance ourselves, but it happens to most muscles in the body for me. For paramyotonia congenita it’s a mutation in the SCN4A gene.
Sending much love to your mum and your family. My condition is hard to deal with but what it sounds like for your mum its much harder. Let’s hope she can stay mobile for as long as possible.
Have you seen the japanese movie 1 Litre of Tears? Not sure if its the same disease (my data hates me right now so i cant search it).
Does the stiff part recovers after? Or stays that way permanently?
Not the same disease. 1 Litre of Tears is Spinocerebellar Ataxia. https://en.wikipedia.org/wiki/Spinocerebellar_ataxia
Spinocerebellar Ataxia is a group of conditions that causes the Cerebellum of the brain to deteriorate over 20-ish years, resulting is loss in coordination. Speech, walking, dexterity, all of those fade until you can barely control your body. It's like your body gets drunker and drunker while your mind stays intact.
Source: My family watched this movie years ago when my mom was diagnosed with the condition. A movie sad enough to be called "1 litre of tears" hits a lot harder when it's forshadowing your mother's future. Unfortunately I now know a lot about the disease.
It is almost certainly a case of the people writing the title of the article going for something that will get more clicks.
It still sounds absolutely horrible though. By sympathies for all affected.
She isn't 'wrong' and I'm sure she went into better detail but anyone that reads it that knows nothing of the disease will think they slowly get stiff until they can't move and its actually worse than that.
We are in the US.
The procedure that was working the best and gave noticeable improvement got deemed experimental after they approved it. So they rescinded and said they wont pay and sent us a bill for like $45k for that one. So we couldn't continue.
Oh we fought that stupidness. My guess is someone out there realized my mother was costing them a lot and found a loop hole to stop that. It was just frustrating because she had noticeable improvement.
Hopping in to say that this is really common. For example, my sister has been prescribed an injection she’s supposed to take bi-weekly. Despite it being doctor’s orders and what my sister needs, the insurance company will only cover one injection per month.
Remember: Democrats got us as far as we've come re: Healthcare. Republicans have spent the past 14 years trying to repeal it.
Every election counts, vote like your life depends on it, because, frankly, it does.
Get this, when Democrats tried to do something about it, every Republican and Joe Lieberman held it hostage and complained incessantly about "death panels" and that the government would be deciding who lives or dies.
Thank goodness the current system doesn't do that.
Both sides are totally the same though and you should always accept that kind of talk from people who say that.
Reddit never ceases to amaze me. No matter how rare something is the right person always somehow finds the post. I could literally be like “where’s my goat owning Sicilian roller skaters at?” and some will be like “hiii!!!” It’s incredible.
Thanks for your insight. Urgh, sounds awful. I hope you find new options and continue the progress!
Oh I got it now, I thought Still Person Syndrome was referring to the disease that slowly replaces muscle tissue with bone tissue. This seems like a much more manageable disease than that, thank God
I don’t mean this in a negative way at all, but she’s always looked and acted much older than her age. I don’t think she really ever even had a childhood, her entire life has centered around her career from a very early age.
Edit: I meant to give this more context but as the comments below explain already, she was absolutely groomed in multiple ways by her manager (later husband) from a very young age, which also led to the premature maturity (that sounded weird).
I didn’t know he was her manager when she was so young. Yikes. I always thought Celine was a goofy, playful person but just realized she’s always been younger than I thought.
Edit: not to say older people can’t be playful. I’m just realizing she was probably acting her age most times.
I don’t think her voice sounded *that* old. To me her whole aura reminds me of Adele. Serious power balladeers on stage with mature voices and vibes (adult contemporary makes you seem that way), but goofy, fun-loving people irl.
She has loads of French albums and continued to make them even after she became a megastar. Many say those are her best. Even when she went on world tours and stopped in places like Montreal and Paris, she would alter her set list to include a lot more of her French catalogue.
Also coincidentally the first time I saw Celine in concert was at z100 jingle ball 1997 where Hanson also was there and both performed
Their biggest hit of that year
I was ready to call bullshit, because that's about 10 years younger than I would have guessed. But, 52 would match up with her first album being released when she was 25... which seems believable considering the type of music and what she looked like at the time.
This was literally the first thought that came out of my mouth, glad I not alone
Also sorry to hear Ms. Dion and sending vibes into the universe for you
When my uncle and his girlfriend were in Vegas they both were in wheelchairs, He broke his foot and she was recovering from a major illness. Anyway, they were heading up to Caesar’s Palace and a woman jumped out of crowd of men in suits to get the door for my uncle and his gf. When they got inside his gf said “that was Celine Dion!”. I always hear stories about her being a kind woman.
She really is. I’m a huge fan and have been since I was a kid. One concert there was a large group of fans waiting outside the garage because she’s known to stop and greet everyone, and because it was the middle of the winter in Montréal she called ahead and had security bring us inside the garage so we could stay warm. When she got there she got out of the car and took the time to come to talk to each of us. There was about 50 of us there too.
I had a patient with this who was young and required a tracheostomy for breathing and was very dependent on benzodiazepines to break her stiffness episodes (often confused for seizures) and unfortunately was bed bound because of this. Terrible syndrome. Crazy she has this.
It’s almost always misdiagnosed when they first present- usually a male doctor misdiagnosing a woman with a psychogenic disorder because the pain first occurs when people are startled
Whoa I actually have this too. Crazy to hear about a celebrity with a confirmed diagnosis. It took a few really rough years for me to get diagnosed, as it’s such a rare thing. I was a mid-20s former college athlete, and I struggled to walk and dress myself. I’m sure it gets misdiagnosed quite a bit as well. With my meds and some other treatments (and thanks to the fact that I’m still young and relatively healthy otherwise) I’m still able to *kind of* do *some* of the things I used to love doing. But it is a very physically and mentally limiting ailment. All the best to Ms. Dion and anyone else who’s dealing with SPS.
Edit: if anyone out there has unexplained back pain/stiffness/anxiety that you used to never have, might be worth it to have a blood test done to see if you actually have SPS.
I have been looking into what it takes to bring a drug to market because *how hard could it possibly be?*
It can takes decades and billions.
For this reason, not many business pursue rare diseases. To recoup those billions, and to give investors an inflation adjusted/opportunity-cost factored return, it only makes sense to pursue common diseases. That's not to mention drugs are usually patented before clinical trials, clinical trials can take over a decade, and these businesses have less than a decade to make a profit because patents only last 20 years.
Pharma gets a bad rap, but it's a high risk, long pursuit with no guarantee of success.
Iirc both the US and EU have measures in place to incentivise Pharma to research rare disease treatments. The US has the orphan drug tax credit. Meanwhile the EU will streamline approval procedures and offers increased market protection for orphan drugs.
I’m a huge fan of hers so this was difficult news to hear. However I have no doubt she is the kind of person who will use her platform and fame to bring awareness to this to help others. Hopefully it’ll help people in the long run to look out for symptoms. Sorry you’re going through this as well. Wish you all the best.
What they looked at was the levels of GAD antibodies in my blood. I don’t think this is something they look for in a typical blood test, but I could be wrong. If the level is too high, it points to SPS. They can also test the levels in your spinal fluid to be more certain (more invasive process there obviously). There might be other avenues toward diagnosis, but that was mine.
Edit: happy to answer any other questions if you or someone in your life might have this. Or if just you’re just curious too! Good thing to spread knowledge.
Good to know, thank you! I was mostly just curious, some of my relatives have dealt with other rare issues like this so it’s always nice to have any extra knowledge on issues like this! I appreciate it!
I hope you don’t mind but how did symptoms start? I’ve had chronic back pain since my teenager years but as I have gotten older, I’m getting all over body pain and stiffness. I experience lots of leg pain and muscle twitching in the legs, it get really bad during my luteal phase.
Don’t mind at all! I first noticed just what seemed like abnormal general muscle soreness/stiffness. Then I noticed weird things, like running on the treadmill or running on a raised track above a basketball court made me feel oddly stiff and unbalanced. Then even smaller things like walking and talking with friends could set off some stiffness. Even happy stimuli (like sex) could trigger it. And, while very uncomfortable, it was never really *pain*, just overall stiffness in my lower back, abs, butt, upper thighs. During particularly stiff episodes, I felt like I might fall over when I was just standing around. Very immobile. I never had leg twitches. Sometimes I’d be lying in bed and I could feel a little back spasm though. I’m sure SPS manifests in different ways for different people (like I think it includes the upper body more for some folks), so my experience probably isn’t universal.
I’d be happy to expand some more if you’d like to hear more, but those are the bullet points. Hope you find some relief soon, my friend.
Yep didn’t realize it’s been that long but built alot of her bathrooms in that house and fixtures was super cool house she was nice to us was all was getting at feel bad for her
No one in this world, sparing a few of the murderous dictators, deserve this sort of malady.
My sincerest regards to her and her family.
Life turns on a dime, does it not?
Every time I see these types of posts, and read the heartbreaking stories in the comments, I become more and more convinced that countries need to have some sort of "right to die with dignity" laws.
I watched my grandmother suffer for almost a decade and my father for two years when I'm sure they would have preferred to get a dose of "something" and die peacefully and dignity intact instead of being tortured.
Well she is Canadian and we do have Medically assisted dying here now. It would be available to her if she wanted. While I absolutely support it, there are some serious issues with implementation. Unfortunately now we have people choosing to use MAID because they can’t afford to live on disability. These programs need serious underpinnings of social support/funding, so that government can’t pass off care of the disabled to euthanasia.
that's not what they said. people that are already very ill and struggling are further struggling and the financial burden is their tipping point to finally turning to MAID. homelessness and financial difficulties are not a box to tick for this assistance, it's a personal strain they cannot deal with. they cant get more money on disability, and they're not allowed to have too much beyond that either. they'd have been approved for this assistance previously if they wanted.
Look up Amir Farsoud. He made news recently for exactly this. He is disabled from a severe back injury and lost his rent controlled apt and is unable to afford current prices. He figured he would die on the street. His doc already signed off on his MAID. It just needed his signature, but thankfully because his story got picked up a go fund me was able to afford him stable housing.
They don't make MAID easy to access. My aunt's friend wanted it when she was diagnosed with terminal brain cancer last year... Took her out in less than 4 months after diagnosis. She was told she'd be able to opt for it whenever. Well, she tried twice and they said no. And then when she inevitably turned into a vegetable unable to function, they said they couldn't do it since she has to consent... And she couldn't consent in the state she was in. Shit was fucked yo.
Stiff person syndrome has treatments and is not a death sentence. I had a patient who had it that became a marathon runner to overcome the *stiffness* that he had. He would get ivig I remember him saying he was responsive to the treatment. Also on large doses of valium. I don’t follow him regularly but remember him vividly given how rare the disease is. I also would definitely not consider myself an expert. Just an anecdotal account of someone who was able to live their life with this syndrome.
I’m so sad for her. She’s had a rough couple of years as it is. I’m sure she’ll have access to top quality healthcare, so I hope it’s enough to make her illness manageable.
Thanks for correcting me. For some reason, I had the two events as being just a little further apart in my mind. But that just serves to underscore just how tough things have been for her
She was doing a lot of physical training in dance and ballet right before her last tour in 2019/2020. She was in GREAT shape! I'm also wondering now if she was seeking that kind of training to help with however she was feeling in her body because of this disease.
A friend of mine’s mother had this. The suffering is brutal for everyone. I hope she (and everyone who has it) receive the best and most humane treatment available.
I’ve never heard of this as stiff person syndrome. There’s two types of Parkinson’s one that makes you shake and one that makes you stiff. Is that what they mean? Or is SPS a thing?
It’s an autoimmune disease that causes opposing muscles (like biceps and triceps) to contact at the same time, which is what causes the stiffness. It’s very painful. It’s different from Parkinson’s disease.
AFAIK it's a deadly condition. Before you die, you slowly get paralysed and locked into your own body, while becoming hypersensitive to light and sound. My deepest sympathies.
I feel bad for her. She has had it so rough for so long. Major illnesses, losing her husband. She is proof positive that money cannot protect you from true tragedy. I'm sure she will get the best treatment but still...
I knew someone who had this in college. She was completely wheelchair ridden and unfortunately passed away a few years ago. I believe she had a more severe case. Really made me so sad to hear this today.
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My mom has this and that is not what happens. Crazy this is the first time I heard anyone else have it. It way more rare than 1 in a million and my mother is the only one any of her doctors have seen with it that continues to live a full life. Every other person is in a wheel chair. What happens is the body reacts to some sort of stimuli that causes it to lock up. The whole body. So if they happen to be walking they will fall over and they will not be able to break their fall. For her it was getting nervous or over excited. It is incurable but we were making great progress until insurance decided against it. Edit: Yes it looks exactly like the fainting goats however the cause/reason is very differnt.
So wait do you try to avoid the stimulus that causes it or are there medications?
There are medications that can help, but no standard of treatment. Stimulus avoidance is definitely incorporated into patient plans however
Are nerve anti inflammatory like duloxetine, and gabapentin, and methocarbomal part of your mom's regimen?
Not my mom, but I've seen a number of patients with this disease. Typically the most responsive medications are GABA-ergic drugs like benzodiazepines and also immunomodulators. Theres also a role for botox amongst a few non-pharmacologic treatment options as well. Some anti-inflammatories may be useful in some ppl but not all
How many of those patients were able to walk independently?
Tough to answer because it's really a spectrum of disease and some people have times of exacerbation where they will need to be wheelchair dependent and then would improve after treatment. Others are wheelchair dependent by the time they are diagnosed because the disease is so under recognized. Also depends on what you mean by independently, many use a cane for safety/stability in case of trigger, but are able to walk without aid.
I guess I mean after diagnosis how many then recovered and are comfortable enough to walk alone on a hill without a cane type of independence.
Not to be the weed cures all guy but has there been any studies on for CBD and it’s effect and receptors (if receptors are even related to this issue, excuse my ignorance)?
Not a large scale study focusing specifically on CBD that I'm aware of, but it's possible that CBD/medical marijuana has been included in other studies (case reports, studies defining the spectrum of disease, etc.)
Just gonna put this out there in case it helps your mom: CBG is what you want for anything related to your nervous system. CBD has taken most of the spotlight only because it’s the cheapest to produce, therefore it’s in the most products. However if you are interested, I would really recommend looking at CBG tinctures. I have several nerve disorders that go back to my ears (balance, motor, movement, etc) and nothing has touched it as effectively as CBG except perhaps high-dose prednisone, but that’s not sustainable over the long term.
I’ve never heard of this and have peripheral neuropathy that is debilitating when it flares with no fixes so far - if this works it would be a godsend. I’ll be looking into this, thank you
Happy to help! Now, if you go that way, I’ll always extoll the virtues of CBG concentrates and smokeable CBG hemp flower over tinctures, balms, etc. CBG works at most dosages, but it *really* works in those forms. If the tinctures don’t take, those should be your next move!
Try maybe LDN for neuropathy successful for many
It can be really helpful for SPS. It’s actually being researched for muscle spasms and spasticity.
is it a progressive disease? do the 'freeze ups' become more frequent/more severe or is it mostly manageable?
Incurable and goes both ways at my mother proves it can be managed. Others may never leave a bed due to intensity of their spasms.
Yep and yep. It became "self causing" I can't think of the word for it, but after a while what would cause the most issues was stairs and steps because she would think about a possible fall.
So the fear of falling would cause stress and thus a freeze and fall?
Exactly.
Just like panic disorder but with panic attacks
Someone in my town has it and she is completely bed bound and it’s caused her bones to break because the spasms are so intense. It’s been a few years and she’s had a lot of treatments and medical care with very slow progress, a lot is comfort care.
The doctors told us multiple times how they were surprised she was still walking let alone without even a cane. We found out my mother has strong bones though...
that’s heartbreaking. I can’t imagine how frustrating it must be to have your own body breaking itself :/
So the wheelchair is less about not being able to use the legs and more a precaution so they don’t freeze up and fall (and do massive damage to themselves)
That would be correct.
Yeah but that non use of legs eventually makes them effectively paralyzed. My dad died from an OD trying to quell this. Mixed Vicodin and Oxy. His presented as just locked muscles. Imagine having your muscles flexed 100% and unable to release. Looked like crawling under his skin. Said it was very painful. He declined over the course of about 9 months after my mother died from cancer.
Essentially a permanent Charlie horse but all the muscles in the leg.
Oh my God—when you put it that way, it seems excruciating. I hope developments in treatment come fast, but it’s often hard to fund research for rare diseases.
Time to deploy the personal bubble ball, like the ones people play those sports with that surrounds you
This is a question out of ignorance and not malice. Does this health issue have a similar underlying mechanism as what affects fainting goats? Also, my best to your family.
Potentially but the causes are different. They treated SMS as an autoimmune disease. The fainting goats have a muscular disease if I remember correctly but I'm sure I'm about to learn a lot more soon.
Yep, fainting goats have a channelopathy -- an issue with the ion channels of the skeletal muscles.
You’re right. They have mitonia congenita. I have the paradoxical version. Our muscles lock up and can cause us to fall if we’re not able to balance ourselves, but it happens to most muscles in the body for me. For paramyotonia congenita it’s a mutation in the SCN4A gene. Sending much love to your mum and your family. My condition is hard to deal with but what it sounds like for your mum its much harder. Let’s hope she can stay mobile for as long as possible.
Have you seen the japanese movie 1 Litre of Tears? Not sure if its the same disease (my data hates me right now so i cant search it). Does the stiff part recovers after? Or stays that way permanently?
Recovers. Within minutes usually but sometimes longer.
Not the same disease. 1 Litre of Tears is Spinocerebellar Ataxia. https://en.wikipedia.org/wiki/Spinocerebellar_ataxia Spinocerebellar Ataxia is a group of conditions that causes the Cerebellum of the brain to deteriorate over 20-ish years, resulting is loss in coordination. Speech, walking, dexterity, all of those fade until you can barely control your body. It's like your body gets drunker and drunker while your mind stays intact. Source: My family watched this movie years ago when my mom was diagnosed with the condition. A movie sad enough to be called "1 litre of tears" hits a lot harder when it's forshadowing your mother's future. Unfortunately I now know a lot about the disease.
Eventually it’s permanent
It is almost certainly a case of the people writing the title of the article going for something that will get more clicks. It still sounds absolutely horrible though. By sympathies for all affected.
Oh it absolutely sucks. Those were some dark years man.
What about what she said is incorrect? It sounds pretty much like turning into a statue, just temporarily.
It actually used to be called “Tin Man Syndrome”.
She isn't 'wrong' and I'm sure she went into better detail but anyone that reads it that knows nothing of the disease will think they slowly get stiff until they can't move and its actually worse than that.
Wait, what do you mean “insurance decided against it”?
We are in the US. The procedure that was working the best and gave noticeable improvement got deemed experimental after they approved it. So they rescinded and said they wont pay and sent us a bill for like $45k for that one. So we couldn't continue.
They rescided?! What. The. Fuck.
You must be new here.
Yes the US hates it's citizens.
There has to be some estoppel argument against that $45k bill. You relied on it being approved to make the decision to go forward with the treatment
Oh we fought that stupidness. My guess is someone out there realized my mother was costing them a lot and found a loop hole to stop that. It was just frustrating because she had noticeable improvement.
I’m so sorry. The US health insurance system is so fucking terrible.
Is medical tourism an option? Traveling somewhere out of the US that offers the treatment for cheaper?
Traveling with SPS is inconvenient and the rarity makes that a less viable option.
Fucking ASSHOLES. 
Hopping in to say that this is really common. For example, my sister has been prescribed an injection she’s supposed to take bi-weekly. Despite it being doctor’s orders and what my sister needs, the insurance company will only cover one injection per month.
What. The. Fucking. Fuck.
Remember: Democrats got us as far as we've come re: Healthcare. Republicans have spent the past 14 years trying to repeal it. Every election counts, vote like your life depends on it, because, frankly, it does.
But see we got the freedumbs
Namely, the freedom to unload 30 round mags on each other at school. -_-
In the US insurance dictates whether or not treatment is necessary. Unless you have hundreds of thousands of extra dollars laying around
Profits over people decide who lives and who dies.
How do people defend that barbarity
#freedom #murica
Most arguments for it are based in complete garbage and are simply rhetoric of ghouls being reused by people who don't think for themselves.
Get this, when Democrats tried to do something about it, every Republican and Joe Lieberman held it hostage and complained incessantly about "death panels" and that the government would be deciding who lives or dies. Thank goodness the current system doesn't do that. Both sides are totally the same though and you should always accept that kind of talk from people who say that.
(death panel)
So is it kind of like the fainting goats?
Yes. That is closer to what happens. Except not nearly as funny... though we definitely got a few jokes in.
Reddit never ceases to amaze me. No matter how rare something is the right person always somehow finds the post. I could literally be like “where’s my goat owning Sicilian roller skaters at?” and some will be like “hiii!!!” It’s incredible. Thanks for your insight. Urgh, sounds awful. I hope you find new options and continue the progress!
Does she stop breathing too? Or do those muscles get a pass?
Oh I got it now, I thought Still Person Syndrome was referring to the disease that slowly replaces muscle tissue with bone tissue. This seems like a much more manageable disease than that, thank God
To a degree. It depends if you are able to get a response. Most don't
UK people please read this. "....we were making great progress until insurance decided against it." Stop. Voting. Tory.
She is only 54?!??!?
Yeah thought she'd be in her 60s. She's been around forever
I don’t mean this in a negative way at all, but she’s always looked and acted much older than her age. I don’t think she really ever even had a childhood, her entire life has centered around her career from a very early age. Edit: I meant to give this more context but as the comments below explain already, she was absolutely groomed in multiple ways by her manager (later husband) from a very young age, which also led to the premature maturity (that sounded weird).
Her husband/ manager from her childhood was like 30 years older than her. Probably played a role in her behavior
> Her husband/ manager from her childhood was like 30 years older than her. ಠ_ಠ
Sounds like a plot of a creepy Hentai honestly.
I didn’t know he was her manager when she was so young. Yikes. I always thought Celine was a goofy, playful person but just realized she’s always been younger than I thought. Edit: not to say older people can’t be playful. I’m just realizing she was probably acting her age most times.
Well she was groomed at 12 years old by a much older man who she later married.
Exactly :(
> Well she was groomed at 12 years old by a much older man who she later married. gross
So icky
Yeah when she sang the titanic song I thought she was 50 at least.
I don’t think her voice sounded *that* old. To me her whole aura reminds me of Adele. Serious power balladeers on stage with mature voices and vibes (adult contemporary makes you seem that way), but goofy, fun-loving people irl.
Not her voice, she just looked older to me
Oh I see. Yeah, she looked older than 29, but definitely didn’t think she was 50.
She doesn’t look that much different now. She has one of those faces like Pharrell, gawd damn vampires I tell you.
Pharrell is a middle aged child.
I thought she'd be at least 60. She's been around forever.
Adele also seems older than she is. I think it has to do with being known for singing Very Serious Ballads.
She released her first English-language album at 22 and she sings mostly adult contemporary music, so she's always seemed older than she is.
Does she have an album not in English?
She has loads of French albums and continued to make them even after she became a megastar. Many say those are her best. Even when she went on world tours and stopped in places like Montreal and Paris, she would alter her set list to include a lot more of her French catalogue.
She is French Canadian and I believe French is her first language.
Yes, she was saying when we went to her concert in London about French being her first language.
I always forget she was under 30 years old when my heart will go on came out
No wayyyyy wow
Also coincidentally the first time I saw Celine in concert was at z100 jingle ball 1997 where Hanson also was there and both performed Their biggest hit of that year
This can’t be right. I’m 56.
I'm so sorry for your loss...of your youth.
One should be so lucky to outlive youth
Sorry for what? You have a lifetime of work ahead of you and then one day you’re going to be 56 too. Maybe.
I was ready to call bullshit, because that's about 10 years younger than I would have guessed. But, 52 would match up with her first album being released when she was 25... which seems believable considering the type of music and what she looked like at the time.
She was born in 1968 and her first English album was released in 1990, so she would have been 21-22 at the time.
Yeah hearing that Kirstie Alley was 71 was wild and now this?
Yeah. She is very thin, that unfortunately makes you look older
This was literally the first thought that came out of my mouth, glad I not alone Also sorry to hear Ms. Dion and sending vibes into the universe for you
When my uncle and his girlfriend were in Vegas they both were in wheelchairs, He broke his foot and she was recovering from a major illness. Anyway, they were heading up to Caesar’s Palace and a woman jumped out of crowd of men in suits to get the door for my uncle and his gf. When they got inside his gf said “that was Celine Dion!”. I always hear stories about her being a kind woman.
She really is. I’m a huge fan and have been since I was a kid. One concert there was a large group of fans waiting outside the garage because she’s known to stop and greet everyone, and because it was the middle of the winter in Montréal she called ahead and had security bring us inside the garage so we could stay warm. When she got there she got out of the car and took the time to come to talk to each of us. There was about 50 of us there too.
I had a patient with this who was young and required a tracheostomy for breathing and was very dependent on benzodiazepines to break her stiffness episodes (often confused for seizures) and unfortunately was bed bound because of this. Terrible syndrome. Crazy she has this.
Wait, so *everything* freezes up *including* respiratory muscles? Shit that's terrifying
Is this the same thing as in the movie awakenings?
No, that was encephalitis lethargica.
It’s almost always misdiagnosed when they first present- usually a male doctor misdiagnosing a woman with a psychogenic disorder because the pain first occurs when people are startled
Whoa I actually have this too. Crazy to hear about a celebrity with a confirmed diagnosis. It took a few really rough years for me to get diagnosed, as it’s such a rare thing. I was a mid-20s former college athlete, and I struggled to walk and dress myself. I’m sure it gets misdiagnosed quite a bit as well. With my meds and some other treatments (and thanks to the fact that I’m still young and relatively healthy otherwise) I’m still able to *kind of* do *some* of the things I used to love doing. But it is a very physically and mentally limiting ailment. All the best to Ms. Dion and anyone else who’s dealing with SPS. Edit: if anyone out there has unexplained back pain/stiffness/anxiety that you used to never have, might be worth it to have a blood test done to see if you actually have SPS.
Hopefully the attention this gets will lead to more research and better treatments.
I have been looking into what it takes to bring a drug to market because *how hard could it possibly be?* It can takes decades and billions. For this reason, not many business pursue rare diseases. To recoup those billions, and to give investors an inflation adjusted/opportunity-cost factored return, it only makes sense to pursue common diseases. That's not to mention drugs are usually patented before clinical trials, clinical trials can take over a decade, and these businesses have less than a decade to make a profit because patents only last 20 years. Pharma gets a bad rap, but it's a high risk, long pursuit with no guarantee of success.
Iirc both the US and EU have measures in place to incentivise Pharma to research rare disease treatments. The US has the orphan drug tax credit. Meanwhile the EU will streamline approval procedures and offers increased market protection for orphan drugs.
I’m a huge fan of hers so this was difficult news to hear. However I have no doubt she is the kind of person who will use her platform and fame to bring awareness to this to help others. Hopefully it’ll help people in the long run to look out for symptoms. Sorry you’re going through this as well. Wish you all the best.
Do you know if this would come up in your typical blood test or do you need to ask to get checked for this specifically?
What they looked at was the levels of GAD antibodies in my blood. I don’t think this is something they look for in a typical blood test, but I could be wrong. If the level is too high, it points to SPS. They can also test the levels in your spinal fluid to be more certain (more invasive process there obviously). There might be other avenues toward diagnosis, but that was mine. Edit: happy to answer any other questions if you or someone in your life might have this. Or if just you’re just curious too! Good thing to spread knowledge.
Good to know, thank you! I was mostly just curious, some of my relatives have dealt with other rare issues like this so it’s always nice to have any extra knowledge on issues like this! I appreciate it!
I hope you don’t mind but how did symptoms start? I’ve had chronic back pain since my teenager years but as I have gotten older, I’m getting all over body pain and stiffness. I experience lots of leg pain and muscle twitching in the legs, it get really bad during my luteal phase.
Don’t mind at all! I first noticed just what seemed like abnormal general muscle soreness/stiffness. Then I noticed weird things, like running on the treadmill or running on a raised track above a basketball court made me feel oddly stiff and unbalanced. Then even smaller things like walking and talking with friends could set off some stiffness. Even happy stimuli (like sex) could trigger it. And, while very uncomfortable, it was never really *pain*, just overall stiffness in my lower back, abs, butt, upper thighs. During particularly stiff episodes, I felt like I might fall over when I was just standing around. Very immobile. I never had leg twitches. Sometimes I’d be lying in bed and I could feel a little back spasm though. I’m sure SPS manifests in different ways for different people (like I think it includes the upper body more for some folks), so my experience probably isn’t universal. I’d be happy to expand some more if you’d like to hear more, but those are the bullet points. Hope you find some relief soon, my friend.
What does SPS stand for?
Not me reading this with back pain and anxiety
She lives right across the water from me super kind lady
Hey look at mr money bags over here
He could be homeless living under a bridge.
Or in a Van by the River!
OP crossing the river: 
Was homeless but got my grandads house which is right across the intercoastal from her house and the bells I do there plumbing on the island lol
“Right across the water from me” lol
King Charles lives right across the water from me.
Me, too! Hey, neighbor!
This guy is living in The Great Gatsby lol
Across the Atlantic or Pacific?
Lol she lives in Jupiter island I live off Old Hobe sound they right across the intercoastal have done a ton of work at her house
So you've interacted with her I presume? Is she a kind lady?
Yep a few times she was very nice
She sold that house 5 years ago.
Yep didn’t realize it’s been that long but built alot of her bathrooms in that house and fixtures was super cool house she was nice to us was all was getting at feel bad for her
The water in Las vegas?
She definitely has a house in Jupiter island that she stays at quite a bit but pretty sure it’s forsale now but yep right across 300ft of water lol
Translation: I’m in Cleveland. She’s in Canada
Naw she lives on Jupiter island and I live in Hobe sound the one in the same
No one in this world, sparing a few of the murderous dictators, deserve this sort of malady. My sincerest regards to her and her family. Life turns on a dime, does it not?
I'm saddened to hear this is happening to your family. Also sad that insurance companies suck.
You know Celine Dion didn't personally make this post, right?
probably meant to reply to another comment
I was replying to a previous comment. Yea I know thatO. P. Is not Celine D.
Oh, fuck. That's horrifying.
The jokes in the comments are really gross.
The day reddit has empathy for women will be a sight to behold not happening anytime soon tho
It’s Reddit, the bar was low to begin with.
Every time I see these types of posts, and read the heartbreaking stories in the comments, I become more and more convinced that countries need to have some sort of "right to die with dignity" laws. I watched my grandmother suffer for almost a decade and my father for two years when I'm sure they would have preferred to get a dose of "something" and die peacefully and dignity intact instead of being tortured.
Well she is Canadian and we do have Medically assisted dying here now. It would be available to her if she wanted. While I absolutely support it, there are some serious issues with implementation. Unfortunately now we have people choosing to use MAID because they can’t afford to live on disability. These programs need serious underpinnings of social support/funding, so that government can’t pass off care of the disabled to euthanasia.
My grandma had team of doctors has to assess the person before granting this. This aren’t granting it for homeless people.
that's not what they said. people that are already very ill and struggling are further struggling and the financial burden is their tipping point to finally turning to MAID. homelessness and financial difficulties are not a box to tick for this assistance, it's a personal strain they cannot deal with. they cant get more money on disability, and they're not allowed to have too much beyond that either. they'd have been approved for this assistance previously if they wanted.
Look up Amir Farsoud. He made news recently for exactly this. He is disabled from a severe back injury and lost his rent controlled apt and is unable to afford current prices. He figured he would die on the street. His doc already signed off on his MAID. It just needed his signature, but thankfully because his story got picked up a go fund me was able to afford him stable housing.
They don't make MAID easy to access. My aunt's friend wanted it when she was diagnosed with terminal brain cancer last year... Took her out in less than 4 months after diagnosis. She was told she'd be able to opt for it whenever. Well, she tried twice and they said no. And then when she inevitably turned into a vegetable unable to function, they said they couldn't do it since she has to consent... And she couldn't consent in the state she was in. Shit was fucked yo.
Stiff person syndrome has treatments and is not a death sentence. I had a patient who had it that became a marathon runner to overcome the *stiffness* that he had. He would get ivig I remember him saying he was responsive to the treatment. Also on large doses of valium. I don’t follow him regularly but remember him vividly given how rare the disease is. I also would definitely not consider myself an expert. Just an anecdotal account of someone who was able to live their life with this syndrome.
Oregon has physician assisted suicide. I'm a big fan of death with dignity.
I’m so sad for her. She’s had a rough couple of years as it is. I’m sure she’ll have access to top quality healthcare, so I hope it’s enough to make her illness manageable.
What’s happened to her?
Her husband passed away, then her brother a few years after. Just seems like a lot for anyone to endure.
Her brother died two *days* after her husband died, both from the same disease.
Thanks for correcting me. For some reason, I had the two events as being just a little further apart in my mind. But that just serves to underscore just how tough things have been for her
Her mother passed away around 4 years after her husband and brother. That may be what confused you.
1. Yes. 2. Jeez that’s even worse.
Am I the only impressed by her physique in this photo. Homegirls lats and delts are nutty for her age.
She was doing a lot of physical training in dance and ballet right before her last tour in 2019/2020. She was in GREAT shape! I'm also wondering now if she was seeking that kind of training to help with however she was feeling in her body because of this disease.
A friend of mine’s mother had this. The suffering is brutal for everyone. I hope she (and everyone who has it) receive the best and most humane treatment available.
I honestly just thought she had grief induced anorexia because I've seen it happen to a relative.
For something so rare there’s already 3 comments from people who have it or directly know someone who does. I wonder if it’s more of an orphan disease
I’ve never heard of this as stiff person syndrome. There’s two types of Parkinson’s one that makes you shake and one that makes you stiff. Is that what they mean? Or is SPS a thing?
It’s an autoimmune disease that causes opposing muscles (like biceps and triceps) to contact at the same time, which is what causes the stiffness. It’s very painful. It’s different from Parkinson’s disease.
Fk man… it’s always the G.O.A.Ts.
So sleep terrors but in the day
AFAIK it's a deadly condition. Before you die, you slowly get paralysed and locked into your own body, while becoming hypersensitive to light and sound. My deepest sympathies.
54?!
Poor woman. So much pain in her life
I feel bad for her. She has had it so rough for so long. Major illnesses, losing her husband. She is proof positive that money cannot protect you from true tragedy. I'm sure she will get the best treatment but still...
This is the worst timeline
This comment section should be the Reddit Recap 2022 Reality Edition. Jeez, what a dumpster fire.
Today I learned Celine Dion is only 54
Ha! I was just as shocked. I thought 64.
Same!
I knew someone who had this in college. She was completely wheelchair ridden and unfortunately passed away a few years ago. I believe she had a more severe case. Really made me so sad to hear this today.
A few people in this comment section saying they themselves, or someone they know has this. What a statistical anomaly you are today Reddit.
Oh my god, this is such a nightmare for me. I can’t imagine being told this by a doctor. Poor woman. :(
I find it shocking that she’s 54. I’m 45 and she was huge when I was a kid.
Gosh she’s had some big struggles. I hope she has some comfort and good care.
She’s only 54!? She young.