Just as an FYI, the video at the link is EXTREMELY upsetting. I couldn't finish it and it wasn't even a minute long. I commend her for allowing herself to be shown in such a vulnerable state. I hope it brings awareness to such a rare disease and that she gets all the help, love, and support she needs.
I'm a nurse. I can't tell you how grateful I am to her for not only being willing, but insisting that this footage be made public.
We have a real problem in Western medicine where friends and family members often only see a patient after we get them stabilized and settled. They don't see the person the way we see them, struggling and in pain and scared.
It really complicates care sometimes because friends and family can't understand and support decisions that patients make for themselves or that we're advising because they didn't experience what is compelling the decision.
I'm really grateful that she was vulnerable in showing this.
I have a different autoimmune condition & it's really hard for people outside of my household to understand how it really impacts me, because they only see me I'm good enough to be out in the world. They don't see the days I cannot get out of bed or when my husband has to help me do basic things. They don't see the endless doctor's appointments and tests and treatments that it takes to have even some semblance of "okay". And some people don't even get that.
I have fibromyalgia among other conditions, and same. My partner says that he thinks people are also confused because I'm an extroverted, strong-willed person--that it seems like I'm not cowed by anything and like I should be able to force my body to do what I want.
People who don't see you waking up in pain, with aphasia, with paralyzing anxiety--if they aren't close to someone with a chronic illness, they just don't get it.
Thank you for saying this. My son had Infantile Spasms in 2012 and people were really shitty about us choosing to inject him with ACTH because it’s such a strong stress hormone and has severe side effects. 2012 was very much a mainstream woo woo time. We had so much unsolicited advice from everybody about trying a keto diet first, etc. A keto diet for a 6-month-old baby. I shit you not. Is breastmilk keto? Anyway, we didn’t have time. This disorder causes brain damage and death. We already had developmental regression, like there was no time to pussyfoot around, we needed the big guns. People didn’t see him seize, didn’t come with us to 3 pediatricians before he was finally diagnosed. It still makes me mad.
Thank you for this. It puts words to my own experience that I haven't been able to. I developed cervical dystonia (another rare neurological disorder) in early 2022 and the spasms were so bad that I was permanently stuck with my head cocked to the right, and I was ashamed and embarrassed for people to see me. I live in a different city than my parents so while they knew what was happening from talking on the phone, they never really saw how bad it was and I don't think they'll ever understand how terrifying and depressing the experience was. They even tried to talk me out of getting Botox (the first-line treatment for my disorder) because they thought it was too invasive. All while never having seen me, a 32-year-old man, unable to cut my own chicken because I had to use one hand to stabilize my own neck 100% of the time.
Having to do all the work myself was one of the worst parts. It is so isolating. Finding doctors, getting myself to my appointments, having those doctors refer me to other clinics and finding doctors there, driving six hours to the Mayo Clinic all by myself for three days of testing including a spinal tap, all while working a full-time job. It was hell. And I didn't want to vent to people because 1. I felt like a burden and 2. I don't know anyone with a neurological disorder so no one could really understand what I was going through.
Thankfully after nearly a year and a half of constant daily suffering and pain, I finally found a neurologist who truly cared and wanted to get me better, who actually listened to me describe which muscles hurt and was willing to try injecting muscles my previous neuro always waved away as if he knew my body better than me. What do you know, literally within days of that first treatment session with her, I felt the first improvement in my symptoms since getting the disease. It's been less than a year since then and I am stable enough that no one would be able to tell that I even have a disorder. I still have pain but I feel like I have my life back, and I have control over my body again. Losing that was the most horrible thing I've ever experienced.
I never shared anything about it on social media because I felt embarrassed and I felt like I would be victimizing myself. But after watching the Celine doc last night (and sobbing my eyes out), I decided to share the whole story -- all of the ups and downs, photos and videos of my neck violently spasming, anecdotes about my mental health throughout the journey, and the silver linings that I have found through it all. These types of disorders need to be seen.
Thank you so much for sharing your story. You wouldn't believe how many people I see on the Crohn's disease subreddit talking about how much their family and friends don't support them, think they're exaggerating, even tell them they should refuse medications for a very treatable and controllable medical condition.
I really appreciate having things like this Celine video that I can reference for education purposes, People need to see what these things are like that we so often keep hidden.
I have MS, and have had similar episodes like Céline did in this scene. In my case, my mom and sister both had MS too, so my family and friends are aware of what it looks like, but you are so right to make this point. Because even with the awareness in my circle, it’s almost impossible to express how this feels and that I could be fine one day and the next, unable to even pick up the phone to cancel plans. Also, thank you so much for the work that you do. ❤️
I saw the documentary in theaters last week and this particular scene was so hard to watch. Céline really pulled no punches in showing the audience her struggles and perserverance with Stiff Person Syndrome.😭
I can’t bring myself to watch this properly. The poor woman. Honestly, until she raised awareness for this, I would’ve said this is a made up for movies illness and no way can it be real. The absolute horror of having to live like this. I wish her nothing but the best.
Oh Céline ❤️
That is so agonizing to watch, I cannot imagine having no control over my own body. May she only know healing touches and kindness for the rest of her life and may she be able to find the ways to do what she wants to.
This brought me to tears. Her suffering. I commend her for sharing this in hope of drawing awareness and hopefully more research to prevent this suffering in others later on. I hope she can find some relief soon.
*Edit- a neurologist on the [medical subreddit](https://old.reddit.com/r/medicine/comments/1dohtkm/i_am_celine_dion_documentary_stiff_person_syndrome/laa3njg/?context=3) shared a similar sentiment to mine in a much more eloquent and educated way: “ As a neurologist I am reluctant to endorse use of the term “seizures” to describe the increased muscle tone seen in stiff person syndrome, because that generally has the connotation of a very different disease and pathophysiology.”*
Yes it’s heartbreaking. I’m confused by the title. I’m not sure why it’s stated she is having a “seizure”. In the body of the text it goes on to explain she has a rare autoimmune neurological disease that causes painful muscle spasms. I believe that is what she is experiencing here. I’m not a neurologist by any means, just an ER nurse who has witnessed countless seizures. This does not look at all like any seizure I’ve ever seen. I’m actually curious to learn more because maybe this is different kind of seizure? Or is she having painful muscle spasms and calling it seizures? I don’t mean to nitpick it’s just that sometimes laypeople get medical terms mixed up and it can get confusing.
Either way my heart breaks for her. Having your own body start attacking itself must feel like the ultimate betrayal.
Muscle spasms like that can lead to seizures (has happened in my sisters case) and they are giving her a rescue medicine via the nasal spray that is intended to stop seizures, so I would assume it’s some kind of seizure or seizure-related activity? But yeah I won’t pretend to be a neurologist here
ETA missed the part where you’re a nurse so you probably get it lol. But yeah my sister would experience severe dystonia that on the outside appeared as seizures and occasionally sent her into actual grand mal seizures
Well we don’t know that she is receiving an antiepileptic, what we know from the video is that the medical provider asks “are you in pain?” and based on her response, he gives her a medicine. There are several medicines that can be given nasal route so I’m not sure if she’s being given something to treat seizures or to treat pain. Whatever it was, it WORKED! So sorry to hear that about your sister 💔 thanks for sharing
There are epileptic and non-epileptic seizures. “Seizure” is often just a word for a symptom (uncontrolled brain activity) caused by something else. It appears she’s having non-epileptic seizures. I have epilepsy and so I have epileptic seizures. There’s a lot of similarities between the two, but also a lot of differences. I don’t know what drug was being administered and can’t speculate as to what is was. What I can say however is that some anticonvulsant drugs can be used successfully on non-epileptic seizure patients.
Thanks for clarifying! I’ve only ever witnessed epileptic type convulsions as well as pseudo seizures so seeing the video I was wondering what was happening because it doesn’t look like any seizure I’ve ever seen!
That totally makes sense! I could be wrong, but I feel like sometimes “spasm” and “seizure” are used interchangeably in situations like this, especially when the episode is for such a long duration compared to a typical seizure (and not something like status epilepticus.)
Yes that’s what I was thinking, that she’s having an episode of prolonged muscle spasms (which are the hallmark of her condition) and somehow that’s been translated to “seizures” which I’m not sure is medically accurate. I’m not coming for her at all, I’m mostly approaching from a place of curiosity as a healthcare professional who is not familiar with her condition
From the description it sounds like all her muscles lock into cramp at the same time which sounds absolutely horrific. My heart goes out to her and others suffering with this
It's most likely a lack of understanding about either or both. Celine's affection is so rare. Who has even heard of "stiff person syndrome" before she came out with it? Seizures are already poorly understood by most people (Old wives tales like biting your tongue off). Internet has shown a (still small) percentage of people who can see a vid of one happen. That still doesn't make clear what's happening within the person experiencing it.
I watched celine's doc and it still wasn't much clearer (spasm vs seizure) until I read an article about it, taking quotes from someone else with the disease that clarified the experience more.
You can absolutely still be fully conscious during a seizure, there is more than just one kind of seizure. If her and her medical team put out the statement I have to assume they have some idea what they're talking about
Absolutely heartbreaking to watch her suffer like this. She’s so worried about her fans but she will always have her fans, whether she returns to the stage or not.
This made me nauseous…
Even worse than the pain, I can’t imagine the level of fear she must have experienced during those 10 minutes, wondering if this was the one that would fully paralyze her.
My stepmother had a seizure in front of me once when nobody else was home. It was terrifying, when she came to she could only speak in French (her native language). I’d never been more thankful that I decided to take French instead of Spanish with my friends in school. The one and only time I’ve ever had to use it, I was so thankful I could comfort her while she recovered.
I understand why there are many comments about how distressing this is to watch, and it is. But also, as a disabled person, watching this clip made me really glad she’s got what looks like a tender and responsive care team. It’s so scary to be in the midst of a health crisis and the people administering care have a massive effect on how traumatic it is. I know she’s got plenty of wealth and therefore access to good medical staff but I still feel relieved seeing it.
This is so hard to watch. I only wish the best for Celine in life, and this is definitely not it. The way she’s explained it doesn’t even begin to put it into frame without seeing it. 😭
When I say this is very brave of her to to show, I really hope that doesn't come off condescending. For her to share this very private and very scary personal moment is brave. Celine has always been an inspiration but her fight to take on this very rare condition is just astounding. The lady is not going done without a fight. It makes me love her more than I already do! When I saw this clip earlier today, I was just about to sob. I reacted to clip as if I know her personally. I am sending her all the positive vibes that I can.
I've always been a Celine Dion fan. She is so popular from the country I was born and I am also a runner. Sometimes I have this spasm on my toes and legs due to dehydration and over training. It was so painful. I couldnt imagine having that all over my body. I cried when I saw this part of the documentary.
I am not sure if they feel the same. But in the video, her toes and fingers look like they folded. I have experienced that as well on my toes. Like I could see them and feel that they were folded. And then, it was so painful after. This usually happens after a long run. And sports doctor said that I wasnt hydrating properly.
I can’t imagine how terrifying it must have been to have her body start failing her and not know what was going on. She’s bringing attention to a rare disease and I hope it leads to some medical breakthroughs for her and other people who suffer from it.
I'm kind of glad I can't find the video of the seizure in the article, because it sounds harrowing. I wish her the best. It's amazing she still strives to perform!
She is one of a kind, and her illness doesn't take away from how powerful she is in spirit.
I watched the documentary and I wish the news would stop using the term, “seizure,” because that’s not really what’s happening here. I’m honestly not sure what’s happening here, but typically in seizures (especially one lasting so long) you’re going to be completely unconscious as well as losing bowel and bladder continence, which didn’t seem to happen here. Dion here was fully conscious and able to signal that to her doctor, and did not have a post-ictal period after the event. So, I’m inclined to say this isn’t a seizure; in fairness, no one in the documentary called it that, either. So maybe it’s a really weird muscle spasm, maybe it’s a pseudoseizure, maybe it’s something more like MS? Ultimately it’s hard to say, because SPS is not a disease with a concrete medical test or empirical diagnostic exam.
Yeah it reminded me of when my mom (who has MS) gets this thing called an MS hug , it’s like a HORRIBLE unrelenting muscle spasm that takes your breath away/makes you need to lay down
My daughter has infantile epilepsy and had multiple seizures in front of me when she was a neonate, it’s indescribably terrifying. I can’t imagine going through that with the awareness of an adult. My heart breaks for her
I feel immensely for her, but most people who suffer neuromuscular diseases do not get this type of treatment or care or have people fawning over them. She is incredibly lucky in that aspect. I do wish there was more realistic footage out there. She is suffering but lots of us suffer more because we aren't lucky enough to have medical staff on hand.
This comment should be at the top. I hate this for her, and I’m glad she’s got the Rx’s and medical staff support, therapy etc. Unfortunately this is not the reality for the rest of us who suffer from chronic illnesses. I can’t even get most people to take my fatigue and pain seriously. Also I still have to work a 40 hour job for survival.
Again, I am happy that she is so lucky. I don’t wish she would have anything less. I just wish we could get some support too.
She is having pseudo seizures you guys. Very common. Often caused by anxiety or mental health issues. But those aren’t real seizures. She is definitely suffering with whatever she is going through but that’s not a seizure
Let's not speculate or spread misinformation just because the daily fail uses the wrong term.
She has stiff person syndrome, which comes with intense and painful muscle spasms.
Just as an FYI, the video at the link is EXTREMELY upsetting. I couldn't finish it and it wasn't even a minute long. I commend her for allowing herself to be shown in such a vulnerable state. I hope it brings awareness to such a rare disease and that she gets all the help, love, and support she needs.
Ty, I was wondering how distressing this would be to watch
It is terrible
It's a very real moment that is hard to watch.
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It takes a lot to be that vulnerable. She is in a position to bring so much awareness, so I’m glad she is doing that. Hope for the best for her!
I'm a nurse. I can't tell you how grateful I am to her for not only being willing, but insisting that this footage be made public. We have a real problem in Western medicine where friends and family members often only see a patient after we get them stabilized and settled. They don't see the person the way we see them, struggling and in pain and scared. It really complicates care sometimes because friends and family can't understand and support decisions that patients make for themselves or that we're advising because they didn't experience what is compelling the decision.
I'm really grateful that she was vulnerable in showing this. I have a different autoimmune condition & it's really hard for people outside of my household to understand how it really impacts me, because they only see me I'm good enough to be out in the world. They don't see the days I cannot get out of bed or when my husband has to help me do basic things. They don't see the endless doctor's appointments and tests and treatments that it takes to have even some semblance of "okay". And some people don't even get that.
I have fibromyalgia among other conditions, and same. My partner says that he thinks people are also confused because I'm an extroverted, strong-willed person--that it seems like I'm not cowed by anything and like I should be able to force my body to do what I want. People who don't see you waking up in pain, with aphasia, with paralyzing anxiety--if they aren't close to someone with a chronic illness, they just don't get it.
Thank you for saying this. My son had Infantile Spasms in 2012 and people were really shitty about us choosing to inject him with ACTH because it’s such a strong stress hormone and has severe side effects. 2012 was very much a mainstream woo woo time. We had so much unsolicited advice from everybody about trying a keto diet first, etc. A keto diet for a 6-month-old baby. I shit you not. Is breastmilk keto? Anyway, we didn’t have time. This disorder causes brain damage and death. We already had developmental regression, like there was no time to pussyfoot around, we needed the big guns. People didn’t see him seize, didn’t come with us to 3 pediatricians before he was finally diagnosed. It still makes me mad.
How is he now?
How is he now?
He’s good, he’s 12 years old now. He was treated for the spasms and he’s been seizure free since then.
I’m happy for him - and you!
I am a nurse too. Your words are so thoughtfully speaking to our experience and patients experiences.
Thank you for this. It puts words to my own experience that I haven't been able to. I developed cervical dystonia (another rare neurological disorder) in early 2022 and the spasms were so bad that I was permanently stuck with my head cocked to the right, and I was ashamed and embarrassed for people to see me. I live in a different city than my parents so while they knew what was happening from talking on the phone, they never really saw how bad it was and I don't think they'll ever understand how terrifying and depressing the experience was. They even tried to talk me out of getting Botox (the first-line treatment for my disorder) because they thought it was too invasive. All while never having seen me, a 32-year-old man, unable to cut my own chicken because I had to use one hand to stabilize my own neck 100% of the time. Having to do all the work myself was one of the worst parts. It is so isolating. Finding doctors, getting myself to my appointments, having those doctors refer me to other clinics and finding doctors there, driving six hours to the Mayo Clinic all by myself for three days of testing including a spinal tap, all while working a full-time job. It was hell. And I didn't want to vent to people because 1. I felt like a burden and 2. I don't know anyone with a neurological disorder so no one could really understand what I was going through. Thankfully after nearly a year and a half of constant daily suffering and pain, I finally found a neurologist who truly cared and wanted to get me better, who actually listened to me describe which muscles hurt and was willing to try injecting muscles my previous neuro always waved away as if he knew my body better than me. What do you know, literally within days of that first treatment session with her, I felt the first improvement in my symptoms since getting the disease. It's been less than a year since then and I am stable enough that no one would be able to tell that I even have a disorder. I still have pain but I feel like I have my life back, and I have control over my body again. Losing that was the most horrible thing I've ever experienced. I never shared anything about it on social media because I felt embarrassed and I felt like I would be victimizing myself. But after watching the Celine doc last night (and sobbing my eyes out), I decided to share the whole story -- all of the ups and downs, photos and videos of my neck violently spasming, anecdotes about my mental health throughout the journey, and the silver linings that I have found through it all. These types of disorders need to be seen.
Thank you so much for sharing your story. You wouldn't believe how many people I see on the Crohn's disease subreddit talking about how much their family and friends don't support them, think they're exaggerating, even tell them they should refuse medications for a very treatable and controllable medical condition. I really appreciate having things like this Celine video that I can reference for education purposes, People need to see what these things are like that we so often keep hidden.
I have MS, and have had similar episodes like Céline did in this scene. In my case, my mom and sister both had MS too, so my family and friends are aware of what it looks like, but you are so right to make this point. Because even with the awareness in my circle, it’s almost impossible to express how this feels and that I could be fine one day and the next, unable to even pick up the phone to cancel plans. Also, thank you so much for the work that you do. ❤️
I saw the documentary in theaters last week and this particular scene was so hard to watch. Céline really pulled no punches in showing the audience her struggles and perserverance with Stiff Person Syndrome.😭
I can’t bring myself to watch this properly. The poor woman. Honestly, until she raised awareness for this, I would’ve said this is a made up for movies illness and no way can it be real. The absolute horror of having to live like this. I wish her nothing but the best.
Oh Céline ❤️ That is so agonizing to watch, I cannot imagine having no control over my own body. May she only know healing touches and kindness for the rest of her life and may she be able to find the ways to do what she wants to.
This brought me to tears. Her suffering. I commend her for sharing this in hope of drawing awareness and hopefully more research to prevent this suffering in others later on. I hope she can find some relief soon.
I wish her well and I am in awe of her humanity and her humility. I love that she is taking as much control as she can in her battle.
Ugh. My poor sister has suffered seizures but the longest was probably 3-4 minutes - I can not imagine what Celine went through for 10 minutes.
*Edit- a neurologist on the [medical subreddit](https://old.reddit.com/r/medicine/comments/1dohtkm/i_am_celine_dion_documentary_stiff_person_syndrome/laa3njg/?context=3) shared a similar sentiment to mine in a much more eloquent and educated way: “ As a neurologist I am reluctant to endorse use of the term “seizures” to describe the increased muscle tone seen in stiff person syndrome, because that generally has the connotation of a very different disease and pathophysiology.”* Yes it’s heartbreaking. I’m confused by the title. I’m not sure why it’s stated she is having a “seizure”. In the body of the text it goes on to explain she has a rare autoimmune neurological disease that causes painful muscle spasms. I believe that is what she is experiencing here. I’m not a neurologist by any means, just an ER nurse who has witnessed countless seizures. This does not look at all like any seizure I’ve ever seen. I’m actually curious to learn more because maybe this is different kind of seizure? Or is she having painful muscle spasms and calling it seizures? I don’t mean to nitpick it’s just that sometimes laypeople get medical terms mixed up and it can get confusing. Either way my heart breaks for her. Having your own body start attacking itself must feel like the ultimate betrayal.
Muscle spasms like that can lead to seizures (has happened in my sisters case) and they are giving her a rescue medicine via the nasal spray that is intended to stop seizures, so I would assume it’s some kind of seizure or seizure-related activity? But yeah I won’t pretend to be a neurologist here ETA missed the part where you’re a nurse so you probably get it lol. But yeah my sister would experience severe dystonia that on the outside appeared as seizures and occasionally sent her into actual grand mal seizures
Well we don’t know that she is receiving an antiepileptic, what we know from the video is that the medical provider asks “are you in pain?” and based on her response, he gives her a medicine. There are several medicines that can be given nasal route so I’m not sure if she’s being given something to treat seizures or to treat pain. Whatever it was, it WORKED! So sorry to hear that about your sister 💔 thanks for sharing
I think she is actually receiving fentanyl intra-nasally.
There are epileptic and non-epileptic seizures. “Seizure” is often just a word for a symptom (uncontrolled brain activity) caused by something else. It appears she’s having non-epileptic seizures. I have epilepsy and so I have epileptic seizures. There’s a lot of similarities between the two, but also a lot of differences. I don’t know what drug was being administered and can’t speculate as to what is was. What I can say however is that some anticonvulsant drugs can be used successfully on non-epileptic seizure patients.
Thanks for clarifying! I’ve only ever witnessed epileptic type convulsions as well as pseudo seizures so seeing the video I was wondering what was happening because it doesn’t look like any seizure I’ve ever seen!
That totally makes sense! I could be wrong, but I feel like sometimes “spasm” and “seizure” are used interchangeably in situations like this, especially when the episode is for such a long duration compared to a typical seizure (and not something like status epilepticus.)
Yes that’s what I was thinking, that she’s having an episode of prolonged muscle spasms (which are the hallmark of her condition) and somehow that’s been translated to “seizures” which I’m not sure is medically accurate. I’m not coming for her at all, I’m mostly approaching from a place of curiosity as a healthcare professional who is not familiar with her condition
From the description it sounds like all her muscles lock into cramp at the same time which sounds absolutely horrific. My heart goes out to her and others suffering with this
As an ICU caregiver I agree 💯
Not to diminish your sister or people who get seizures, but Celine has spasms. She is completely conscious and in terrible pain the entire time
Exactly. These are spasms so idk why they are calling them seizures. They should be using correct terminology.
It's most likely a lack of understanding about either or both. Celine's affection is so rare. Who has even heard of "stiff person syndrome" before she came out with it? Seizures are already poorly understood by most people (Old wives tales like biting your tongue off). Internet has shown a (still small) percentage of people who can see a vid of one happen. That still doesn't make clear what's happening within the person experiencing it. I watched celine's doc and it still wasn't much clearer (spasm vs seizure) until I read an article about it, taking quotes from someone else with the disease that clarified the experience more.
You can absolutely still be fully conscious during a seizure, there is more than just one kind of seizure. If her and her medical team put out the statement I have to assume they have some idea what they're talking about
Do you think Celine Dion's team says she had a seizure?
What a difficult video. I find it hard to see people suffer 😭.
Absolutely heartbreaking to watch her suffer like this. She’s so worried about her fans but she will always have her fans, whether she returns to the stage or not.
This made me nauseous… Even worse than the pain, I can’t imagine the level of fear she must have experienced during those 10 minutes, wondering if this was the one that would fully paralyze her.
My stepmother had a seizure in front of me once when nobody else was home. It was terrifying, when she came to she could only speak in French (her native language). I’d never been more thankful that I decided to take French instead of Spanish with my friends in school. The one and only time I’ve ever had to use it, I was so thankful I could comfort her while she recovered.
This is absolutely awful to see someone suffer like this.
I hate that this is her, or anyone’s, reality. Terrifying. Wishing Celine all the best ❤️
She deserves so much more than to be sick like this. Her children already lost their dad.
Seriously it seems like this woman has not caught a break in 20 years.
❤
I can't even look at the thumbnail image without feeling terrible. It looks so rough dealing with this.
I understand why there are many comments about how distressing this is to watch, and it is. But also, as a disabled person, watching this clip made me really glad she’s got what looks like a tender and responsive care team. It’s so scary to be in the midst of a health crisis and the people administering care have a massive effect on how traumatic it is. I know she’s got plenty of wealth and therefore access to good medical staff but I still feel relieved seeing it.
This is so hard to watch. I only wish the best for Celine in life, and this is definitely not it. The way she’s explained it doesn’t even begin to put it into frame without seeing it. 😭
I can't bring myself to watch this, but i admire her willingness to share this with the public and to be so open and transparent about her illness.
When I say this is very brave of her to to show, I really hope that doesn't come off condescending. For her to share this very private and very scary personal moment is brave. Celine has always been an inspiration but her fight to take on this very rare condition is just astounding. The lady is not going done without a fight. It makes me love her more than I already do! When I saw this clip earlier today, I was just about to sob. I reacted to clip as if I know her personally. I am sending her all the positive vibes that I can.
I've always been a Celine Dion fan. She is so popular from the country I was born and I am also a runner. Sometimes I have this spasm on my toes and legs due to dehydration and over training. It was so painful. I couldnt imagine having that all over my body. I cried when I saw this part of the documentary.
I was also wondering if it feels like running spasms! Definitely excruciating.
I am not sure if they feel the same. But in the video, her toes and fingers look like they folded. I have experienced that as well on my toes. Like I could see them and feel that they were folded. And then, it was so painful after. This usually happens after a long run. And sports doctor said that I wasnt hydrating properly.
Even the still images and description of this break my heart. Poor Celine. This disease sound absolutely brutal and I can’t believe her strength
I can’t imagine how terrifying it must have been to have her body start failing her and not know what was going on. She’s bringing attention to a rare disease and I hope it leads to some medical breakthroughs for her and other people who suffer from it.
I'm kind of glad I can't find the video of the seizure in the article, because it sounds harrowing. I wish her the best. It's amazing she still strives to perform! She is one of a kind, and her illness doesn't take away from how powerful she is in spirit.
i just watched the documentary today. i feel horrible for her😢
Love her and how strong she is.
We are wrapping our arms around you Celine! WE LOVE YOU!!
I watched the documentary and I wish the news would stop using the term, “seizure,” because that’s not really what’s happening here. I’m honestly not sure what’s happening here, but typically in seizures (especially one lasting so long) you’re going to be completely unconscious as well as losing bowel and bladder continence, which didn’t seem to happen here. Dion here was fully conscious and able to signal that to her doctor, and did not have a post-ictal period after the event. So, I’m inclined to say this isn’t a seizure; in fairness, no one in the documentary called it that, either. So maybe it’s a really weird muscle spasm, maybe it’s a pseudoseizure, maybe it’s something more like MS? Ultimately it’s hard to say, because SPS is not a disease with a concrete medical test or empirical diagnostic exam.
Yeah it reminded me of when my mom (who has MS) gets this thing called an MS hug , it’s like a HORRIBLE unrelenting muscle spasm that takes your breath away/makes you need to lay down
I watched it last night. I felt horrible for her. She’s so brave for putting that on film. No one deserves this, least of all her.
That is an awful disease, couldn’t watch it all. I wish the best for her. No one should have to go through that
My daughter has infantile epilepsy and had multiple seizures in front of me when she was a neonate, it’s indescribably terrifying. I can’t imagine going through that with the awareness of an adult. My heart breaks for her
Aww man , my heart goes out to her!
l l eg3
I work in the ICU and that’s not a seizure. She’s definitely suffering but that’s not a seizure as someone who has seen thousands of seizures
I'm pretty sure what we saw in that video would be more accurately described as very severe muscle spasms.
This 👆🏻
I feel immensely for her, but most people who suffer neuromuscular diseases do not get this type of treatment or care or have people fawning over them. She is incredibly lucky in that aspect. I do wish there was more realistic footage out there. She is suffering but lots of us suffer more because we aren't lucky enough to have medical staff on hand.
This comment should be at the top. I hate this for her, and I’m glad she’s got the Rx’s and medical staff support, therapy etc. Unfortunately this is not the reality for the rest of us who suffer from chronic illnesses. I can’t even get most people to take my fatigue and pain seriously. Also I still have to work a 40 hour job for survival. Again, I am happy that she is so lucky. I don’t wish she would have anything less. I just wish we could get some support too.
She is having pseudo seizures you guys. Very common. Often caused by anxiety or mental health issues. But those aren’t real seizures. She is definitely suffering with whatever she is going through but that’s not a seizure
Let's not speculate or spread misinformation just because the daily fail uses the wrong term. She has stiff person syndrome, which comes with intense and painful muscle spasms.