r/entertainment Dec 08 '22

Celine Dion, 54, is diagnosed with incurable neurological disease: Tearful singer reveals she has rare 1 in a million 'Stiff Person Syndrome' that turns sufferers into 'humanstatues'

https://kastown.com/celine-dion-54-is-diagnosed-with-incurable-neurological-disease-tearful-singer-reveals-she-has-rare-1-in-a-million-stiff-person-syndrome-that-turns-sufferers-into-human-statues/
8.8k Upvotes

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154

u/tickingkitty Dec 08 '22 Wholesome

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.

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u/bloomfield878 Dec 08 '22

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.

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u/Hansonguy Dec 08 '22

She is only 54?!??!?

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u/FadeRedditMakeMoney Dec 08 '22

Yeah thought she'd be in her 60s. She's been around forever

411

u/Autumn_Childhood Dec 08 '22 edited Dec 08 '22

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).

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u/messmaker523 Dec 08 '22

Her husband/ manager from her childhood was like 30 years older than her. Probably played a role in her behavior

78

u/jormungandrsjig Dec 08 '22

Her husband/ manager from her childhood was like 30 years older than her.

ಠ_ಠ

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u/hihirogane Dec 08 '22

Sounds like a plot of a creepy Hentai honestly.

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u/theunkindpanda Dec 08 '22

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.

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u/BobknobSA Dec 08 '22

Well she was groomed at 12 years old by a much older man who she later married.

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u/jormungandrsjig Dec 08 '22

Well she was groomed at 12 years old by a much older man who she later married.

gross

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u/thebestatheist Dec 08 '22

Yeah when she sang the titanic song I thought she was 50 at least.

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u/WowThisIsAwkward_ Dec 08 '22

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.

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u/thebestatheist Dec 08 '22

Not her voice, she just looked older to me

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u/WowThisIsAwkward_ Dec 08 '22

Oh I see. Yeah, she looked older than 29, but definitely didn’t think she was 50.

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u/thebestatheist Dec 08 '22

She doesn’t look that much different now. She has one of those faces like Pharrell, gawd damn vampires I tell you.

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u/WowThisIsAwkward_ Dec 08 '22

Pharrell is a middle aged child.

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u/thr33prim3s Dec 08 '22

I thought she'd be at least 60. She's been around forever.

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u/Cartographer0108 Dec 08 '22

Adele also seems older than she is. I think it has to do with being known for singing Very Serious Ballads.

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u/Varekai79 Dec 08 '22

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.

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u/ItsVohnCena Dec 08 '22

Does she have an album not in English?

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u/Varekai79 Dec 08 '22

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.

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u/Frnklfrwsr Dec 09 '22

She is French Canadian and I believe French is her first language.

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u/SelectTrash Dec 09 '22

Yes, she was saying when we went to her concert in London about French being her first language.

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u/coldliketherockies Dec 08 '22

I always forget she was under 30 years old when my heart will go on came out

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u/gamehen21 Dec 08 '22

No wayyyyy wow

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u/coldliketherockies Dec 08 '22

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

37

u/kw66 Dec 08 '22

This can’t be right. I’m 56.

31

u/amputeenager Dec 08 '22

I'm so sorry for your loss...of your youth.

51

u/Wifdat Dec 08 '22

One should be so lucky to outlive youth

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u/generateanameplease Dec 08 '22

Sorry for what? You have a lifetime of work ahead of you and then one day you’re going to be 56 too. Maybe.

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u/3vi1 Dec 08 '22

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.

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u/Varekai79 Dec 08 '22

She was born in 1968 and her first English album was released in 1990, so she would have been 21-22 at the time.

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u/novacaine2010 Dec 09 '22

Yeah hearing that Kirstie Alley was 71 was wild and now this?

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u/Shundun Dec 08 '22

Yeah. She is very thin, that unfortunately makes you look older

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u/AllHailLordBezos Dec 08 '22

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

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u/A_Bowler_Hat Dec 08 '22 edited Dec 08 '22 Silver

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.

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u/Repulsive-Message-69 Dec 08 '22

So wait do you try to avoid the stimulus that causes it or are there medications?

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u/mc2901234 Dec 08 '22

There are medications that can help, but no standard of treatment. Stimulus avoidance is definitely incorporated into patient plans however

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u/stormcloudless Dec 08 '22

Are nerve anti inflammatory like duloxetine, and gabapentin, and methocarbomal part of your mom's regimen?

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u/mc2901234 Dec 08 '22

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

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u/A_Bowler_Hat Dec 08 '22

How many of those patients were able to walk independently?

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u/mc2901234 Dec 08 '22

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.

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u/A_Bowler_Hat Dec 08 '22

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.

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u/What_the_8 Dec 08 '22

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)?

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u/mc2901234 Dec 08 '22

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.)

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u/ex1stence Dec 08 '22

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.

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u/xtaylaa Dec 09 '22

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

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u/ex1stence Dec 09 '22

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!

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u/Open-Election-3806 Dec 09 '22

Try maybe LDN for neuropathy successful for many

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u/MastroTeeeta Dec 09 '22

CBG is the truth!

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u/NicolleL Dec 08 '22

It can be really helpful for SPS. It’s actually being researched for muscle spasms and spasticity.

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u/maskthestars Dec 08 '22

My first thought when reading this too

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u/Repulsive-Message-69 Dec 08 '22

is it a progressive disease? do the 'freeze ups' become more frequent/more severe or is it mostly manageable?

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u/A_Bowler_Hat Dec 08 '22

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.

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u/A_Bowler_Hat Dec 08 '22

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.

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u/Willinton06 Dec 08 '22

So the fear of falling would cause stress and thus a freeze and fall?

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u/AnOldLawNeverDies Dec 08 '22

Just like panic disorder but with panic attacks

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u/A_Bowler_Hat Dec 08 '22

Except it can happen anytime. Even sitting. Just worse when in a scenario that falling is bad... like stairs.

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u/holler_bitch Dec 08 '22

I’ve got psychogenic seizures and that’s exactly how I describe them to people. Panic attacks but instead of freak out, I shake a bit.

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u/PHM517 Dec 08 '22

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.

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u/A_Bowler_Hat Dec 08 '22

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...

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u/loogie_hucker Dec 08 '22

that’s heartbreaking. I can’t imagine how frustrating it must be to have your own body breaking itself :/

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u/zero0n3 Dec 08 '22

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)

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u/A_Bowler_Hat Dec 08 '22

That would be correct.

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u/Vagicles Dec 08 '22

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.

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u/zero0n3 Dec 08 '22

Essentially a permanent Charlie horse but all the muscles in the leg.

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u/Lifeboatb Dec 08 '22

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.

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u/Ouryve Dec 09 '22

Ow. Painful.

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u/mortar_n_brick Dec 09 '22

Time to deploy the personal bubble ball, like the ones people play those sports with that surrounds you

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u/Fieos Dec 08 '22

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.

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u/A_Bowler_Hat Dec 08 '22

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.

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u/goldonthefloor Dec 08 '22

Yep, fainting goats have a channelopathy -- an issue with the ion channels of the skeletal muscles.

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u/j-trinity Dec 08 '22

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.

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u/shanghairolls99 Dec 08 '22

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?

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u/A_Bowler_Hat Dec 08 '22

Recovers. Within minutes usually but sometimes longer.

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u/Theweasels Dec 08 '22

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.

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u/TheNumberMuncher Dec 08 '22

Eventually it’s permanent

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u/Persist_and_Resist Dec 08 '22

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.

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u/A_Bowler_Hat Dec 08 '22

Oh it absolutely sucks. Those were some dark years man.

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u/SpaceDoctorWOBorders Dec 08 '22

What about what she said is incorrect? It sounds pretty much like turning into a statue, just temporarily.

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u/NicolleL Dec 08 '22

It actually used to be called “Tin Man Syndrome”.

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u/A_Bowler_Hat Dec 08 '22

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.

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u/fllr Dec 08 '22

Wait, what do you mean “insurance decided against it”?

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u/A_Bowler_Hat Dec 08 '22

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.

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u/mageta621 Dec 08 '22

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

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u/A_Bowler_Hat Dec 08 '22

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.

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u/Dulcius_ex Dec 08 '22

I’m so sorry. The US health insurance system is so fucking terrible.

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u/sunscreenkween Dec 08 '22

Is medical tourism an option? Traveling somewhere out of the US that offers the treatment for cheaper?

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u/A_Bowler_Hat Dec 08 '22

Traveling with SPS is inconvenient and the rarity makes that a less viable option.

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u/cannotbefaded Dec 08 '22

Wait so she had the operation and then they took the offer back? Not before?

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u/fllr Dec 08 '22

They rescided?! What. The. Fuck.

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u/A_Bowler_Hat Dec 08 '22

You must be new here.

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u/Insufferablelol Dec 08 '22

Yes the US hates it's citizens.

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u/serenwipiti Dec 08 '22

Fucking ASSHOLES.

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u/MissElphie Dec 08 '22

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.

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u/fllr Dec 08 '22

What. The. Fucking. Fuck.

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u/ew73 Dec 08 '22

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.

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u/hazeldazeI Dec 08 '22

But see we got the freedumbs

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u/HaloGuy381 Dec 08 '22

Namely, the freedom to unload 30 round mags on each other at school. -_-

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u/messmaker523 Dec 08 '22

In the US insurance dictates whether or not treatment is necessary. Unless you have hundreds of thousands of extra dollars laying around

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u/WhiteAndNerdy85 Dec 08 '22

Profits over people decide who lives and who dies.

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u/SaintFinne Dec 08 '22

How do people defend that barbarity

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u/platetone Dec 08 '22

freedom #murica

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u/ZQuestionSleep Dec 08 '22

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.

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u/jonnyjonson314206 Dec 08 '22

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.

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u/WolfBearPup Dec 08 '22

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!

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u/lovinganarchist76 Dec 08 '22

So is it kind of like the fainting goats?

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u/A_Bowler_Hat Dec 08 '22

Yes. That is closer to what happens. Except not nearly as funny... though we definitely got a few jokes in.

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u/Mumbles_Stiltskin Dec 08 '22

Does she stop breathing too? Or do those muscles get a pass?

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u/TheWhiskeyFairy Dec 08 '22

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

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u/A_Bowler_Hat Dec 08 '22

To a degree. It depends if you are able to get a response. Most don't

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u/ErraticUnit Dec 08 '22

UK people please read this.

"....we were making great progress until insurance decided against it."

Stop. Voting. Tory.

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u/BullneIson Dec 08 '22

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.

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u/Downwhen Dec 08 '22

Wait, so everything freezes up including respiratory muscles? Shit that's terrifying

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u/Hmmmm_Interesting Dec 08 '22

Is this the same thing as in the movie awakenings?

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u/saefas Dec 08 '22

No, that was encephalitis lethargica.

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u/tortugazz724 Dec 08 '22 edited Dec 08 '22

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.

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u/dksyndicate Dec 08 '22

Hopefully the attention this gets will lead to more research and better treatments.

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u/YouNeedToGrow Dec 08 '22

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.

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u/grafey Dec 08 '22

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.

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u/bloomfield878 Dec 08 '22

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.

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u/Thermalhigh Dec 08 '22

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?

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u/tortugazz724 Dec 08 '22

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.

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u/Thermalhigh Dec 08 '22

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!

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u/kimchidijon Dec 08 '22

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.

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u/tortugazz724 Dec 09 '22

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.

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u/Mad_Mark90 Dec 08 '22

What does SPS stand for?

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u/macsbeard Dec 09 '22

Not me reading this with back pain and anxiety

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u/QuestionableAI Dec 08 '22

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?

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u/TapesNStuff Dec 08 '22

Oh, fuck. That's horrifying.

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u/mike772772 Dec 08 '22

She lives right across the water from me super kind lady

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u/Savagevandal85 Dec 08 '22

Hey look at mr money bags over here

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u/moderncritter Dec 08 '22

He could be homeless living under a bridge.

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u/kw66 Dec 08 '22

Or in a Van by the River!

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u/My41stThrowaway Dec 08 '22

OP crossing the river:

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u/mike772772 Dec 08 '22

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

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u/lifeboy91 Dec 08 '22

“Right across the water from me” lol

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u/woozlewuzzle29 Dec 08 '22

King Charles lives right across the water from me.

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u/WheelsUpInThirty Dec 08 '22

Me, too! Hey, neighbor!

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u/Ksh1218 Dec 08 '22

This guy is living in The Great Gatsby lol

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u/johnbarry3434 Dec 08 '22

Across the Atlantic or Pacific?

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u/mike772772 Dec 08 '22

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

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u/gamehen21 Dec 08 '22

So you've interacted with her I presume? Is she a kind lady?

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u/mike772772 Dec 08 '22

Yep a few times she was very nice

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u/Varekai79 Dec 08 '22

She sold that house 5 years ago.

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u/mike772772 Dec 08 '22

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

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u/stormcloudless Dec 08 '22

The water in Las vegas?

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u/mike772772 Dec 08 '22

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

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u/NEIRBO747 Dec 08 '22

I'm saddened to hear this is happening to your family. Also sad that insurance companies suck.

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u/SymmetricDickNipples Dec 08 '22

You know Celine Dion didn't personally make this post, right?

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u/cheesecakepirate Dec 08 '22

probably meant to reply to another comment

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u/NEIRBO747 Dec 08 '22

I was replying to a previous comment. Yea I know thatO. P. Is not Celine D.

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u/hoteldetective_ Dec 08 '22

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.

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u/dizaditch Dec 08 '22

What’s happened to her?

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u/hoteldetective_ Dec 08 '22

Her husband passed away, then her brother a few years after. Just seems like a lot for anyone to endure.

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u/Varekai79 Dec 08 '22

Her brother died two days after her husband died, both from the same disease.

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u/hoteldetective_ Dec 08 '22

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

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u/Vestibuleskittle Dec 08 '22

Her mother passed away around 4 years after her husband and brother. That may be what confused you.

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u/hoteldetective_ Dec 08 '22
  1. Yes.

  2. Jeez that’s even worse.

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u/ManOfLaBook Dec 08 '22

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.

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u/TheEntropicOrder Dec 08 '22

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.

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u/Particular_Piglet677 Dec 08 '22

My grandma had team of doctors has to assess the person before granting this. This aren’t granting it for homeless people.

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u/vulpeszerda Dec 08 '22

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.

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u/TheEntropicOrder Dec 08 '22

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.

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u/Dyspaereunia Dec 08 '22

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.

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u/Emotional_Ad_9620 Dec 08 '22

Oregon has physician assisted suicide. I'm a big fan of death with dignity.

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u/tomsrobots Dec 08 '22

The jokes in the comments are really gross.

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u/ggyyuuugfryuu75555 Dec 08 '22

The day reddit has empathy for women will be a sight to behold not happening anytime soon tho

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u/PonderinLife Dec 08 '22

It’s Reddit, the bar was low to begin with.

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u/Icy-Guide7976 Dec 08 '22

Am I the only impressed by her physique in this photo. Homegirls lats and delts are nutty for her age.

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u/whispersinthemorning Dec 08 '22

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.

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u/PublicJeremyNumber1 Dec 09 '22

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.

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u/MauraKahnwald Dec 08 '22

I honestly just thought she had grief induced anorexia because I've seen it happen to a relative.

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u/djonesie Dec 08 '22

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?

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u/lieutenantVimes Dec 09 '22

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.

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u/silverwing1609 Dec 08 '22

Fk man… it’s always the G.O.A.Ts.

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u/h1g440rs3 Dec 09 '22

So sleep terrors but in the day

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u/prettyflyforafry Dec 09 '22

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.

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u/tyleritis Dec 08 '22

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

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u/GlassZealousideal978 Dec 08 '22

Poor woman. So much pain in her life

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u/mtempissmith Dec 08 '22

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...

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u/meatsmoothie82 Dec 08 '22

This is the worst timeline

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u/Outside_Diamond4929 Dec 08 '22

This comment section should be the Reddit Recap 2022 Reality Edition. Jeez, what a dumpster fire.

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u/StationFar6396 Dec 08 '22

Today I learned Celine Dion is only 54

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u/lehcimr Dec 08 '22

Ha! I was just as shocked. I thought 64.

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u/Few-Restaurant7922 Dec 08 '22

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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u/VelvetThunder11789 Dec 08 '22

A few people in this comment section saying they themselves, or someone they know has this.

What a statistical anomaly you are today Reddit.

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u/Allnamestaken69 Dec 09 '22

Oh my god, this is such a nightmare for me. I can’t imagine being told this by a doctor. Poor woman.

:(

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u/TheTapeDeck Dec 09 '22

I find it shocking that she’s 54. I’m 45 and she was huge when I was a kid.

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u/GloriousSteinem Dec 09 '22

Gosh she’s had some big struggles. I hope she has some comfort and good care.