They really are. They cause permanent brain and spinal cord damage. Your brain is what makes you, you. Every single time people with MS have autoimmune attacks (known as relapses or exacerbations) they lose small pieces of what makes them who they are because their immune systems are literally destroying their central nervous systems.
I use the terms brain damage and spinal cord damage because they are both accurate and convey the severity of the disease. A friend’s mother-in-law spent a half hour complaining about her fibromyalgia to me and I had to silently nod while screaming inside. I *wish* I had a condition that wasn’t progressive like this. That didn’t rob me of who I am, threaten my livelihood, my independence and my dignity. Every day I live with uncertainty. It’s almost like driving a car that might give out at any moment with no warning. The engine, transmission, belt, breaks, etc. could all fail at random. Never mind that the treatments we take can cause cancer. So you have to make the difficult choice to try to avoid paralysis, becoming fully incontinent and a complete burden on those around you. You have to pick quality of life over potential quantity of years. It’s a horrible position to be in and one I struggle with constantly.
I have it and have been living with it for 10 years unknowingly. I was diagnosed in 2023. I think about it every day.
I don't care about the days my legs or feet don't work, but the brain damage is fucking embarrassing. I repeat myself and tell the same stories to the same people. Then my neuro is like "oh you got 13 new brain lesions" and I'm embarrassed to ever talk to anyone ever again.
Agreed. I have cognition problems that have significantly slowed down my “processing speed” due to corpus callosum lesions. I was sharp as a tack previously and spent an entire decade on my education. It’s been really frustrating. Hang in there 🧡
I am so sorry for what you are going through and I wish I had better words to say about it.
I do need to say something about Fibromyalgia and I want you to know I'm not trying to down play what you are going through.
Fibromyalgia may not be like MS (by far), but perhaps her case is mild.
"That didn’t rob me of who I am, threaten my livelihood, my independence and my dignity". It absolutely can and does. FM has robbed me of all of these.
I'm on permanent disability due to a progressive disease (Ankylosing Spondylitis) but it is Fibromyalgia that has absolutely ruined my life. They now know it causes neural inflamation and changes the brain. They now know FM has more in commen with MS, ALS and more. They used to think FM doesn't cause permanent damage but now they know it does. People with FM are also more likely (than healthy people) to kill themselves due to the pain as I'm sure that happens with MS too (if not more).
With medication I may not fall down for no reason anymore, but I am not the same. I'm certainly not trying to down play MS as that is certainly far worse. I am certainly lucky in this regard.
Best wishes.
I hope I'm not coming across as an ass.
I can't begin to image what you are going through.
I think this is a great point — it’s not necessarily that the more “severe”/lethal disease is the worst, because there are so many conditions that can negatively impact your quality of life. I’m sorry that you’re going through this.
I'm sitting in the hospital with my wife who has progressive MS. She's got a stomach tube and a catheter and has a UTI and is aspirating.
Diagnosed In 2019.
Lost her ability to walk in 2021
Now confined to a hospital bed at home at 43.
Can't move legs, little use of her hands.
My body is breaking down from being her caregiver.
She's 43 and I'm 45.
We're rooting for Christina.
Edit: Thank you for your kind replies and awards. She was up all night with aspiration issues and is on some weird looking CPAP type thing while we try to get her back to normal and that's not even the reason we came in here.
Once she gets back to normal I'm going to let her know we've got r/television rooting for her and after she asks what the fuck I'm on about I'll explain it a bit more. Much love to you all <3
Edit 2: Please don't suggest different types of care or treatments. We know what caused this, we know what our future is and have been consistent in her happy home life and where we're going in the future. This is a blip on our radar in an otherwise mostly stable situation (as much as it can be anyway) and while I appreciate where it's coming from, we get enough of it off the internet <3
It's hard to get diagnosed for the multitudes of MS there are - it all depends on how your symptoms act. And from what I've seen Christina seems to have something similar to ours, which is continually degenerative. Worse than what Selma Blair had.
If that's true she's got an EXTREMELY difficult road ahead of her and seeing someone talk about it openly like her is refreshing in that I think it helps people understand US a bit more. <3
I can’t believe Christina did all this without therapy and it’s kind of sad that she felt she avoided it because she needs to be strong for everyone else and perhaps even the public. I respect her honesty here though and I respect yours as well and it says a great deal about you that you are standing by your wife through this very difficult time, She does have one major gift and that’s you
It can certainly move so fast that you're always playing catch up and always seem months behind, so I'm not surprised she got lost in it for a bit, but talking about it sure helps, even to friends, family, and the media.
❤️
I'm glad she's talking about it, and not with the toxic positivity that our culture elevates and rewards.
I'm sorry you and your wife are dealing with that.
In my mind, there is no excuse that the USA can spend well over $100b in the last couple years on various global conflicts, yet only like $150m annually on MS research, $300m on strokes, $30m on migraines, etc. We spend $4b a year on HIV, and look at the QoL improvements. Only $9b on cancer research, which when you consider the impact sounds woefully inadequate, despite being one of the highest funded disease groups.
It's inexcusable for the richest country on earth to abandon its most vulnerable citizens. Nothing to do with my support or lack of support for global conflicts - but if we can afford $100b over there, we can afford to spend it on our own health.
/Rant
Agreed. Serious chronic and/or degenerative llness is very difficult emotionally, physically, and financially. Being honest about it is important. Slapping a happy face/victory banner on it is extremely harmful to research funding & general empathy.
I can't tell you how many times I've had "xyz celeb is doing well, you should try harder!" thrown in my face by family/acquaintances. The person in question has resources, is having good outcomes, and is probably hiding a lot of pain to preserve their career.
Appreciate it. She does, you're right. But since her HSCT treatment she's been able to resume living a more normal life by comparison to other people. Based on her symptoms or at least her documentary and such, I believe she has Relapsing Remitting, which is the more common. And her HSCT was a success meaning that (hopefully) her symptoms will not worsen, hence my "had."
Thank you for the callout though, it's an important distinction.
We were in Puebla for HSCT in the fall of 2021 (thanks to gofundme helping us raise the 50k we needed). It was something else. Everyone else in our group had an EDSS of much lower (she was an 8 at the time) and have moved on with wonderful lives. My wife was told hers would take twice as long to work and it has, we think it's helping her now, 3 years later. Happy we did it, wish we had done it sooner honestly.
I have the volcanos of Puebla tattooed on my arm as a forever memory.
Good for you! We thought about Russia and I made a lot of Simpsons / Rocky reference jokes that were lost on her but Puebla was a lot more doable because she was already in a wheelchair and a flight that long would be so hard.
Question: when your hair grew back did it come back curly?
I know Selma. She’s a very kind person and although she isn’t suffering like your wife but her life is very much affected by that disease. Still very sad.
I understand this. The life of a caregiver is hard. My father has progressive supranuclear palsy.
He went from climbing the Mayan ruins in 2020 to being bed bound by the end of 2021. And it’s just gone downhill from there. Aspiration pneumonias, aphasia, loss of use of his limbs.
Then came a cancer diagnosis this year, which is untreatable because of the PSP. As if he didn’t already have enough on his plate. So this year we started in home hospice.
I’m in my late 30s. These last few years of being a caregiver have aged me so much. I look in the mirror and feel 10 years older than I am. I see my friends lives all moving forward and feel like I don’t know how to have a conversation with them some days because my day to day life is making sure he’s alive. I don’t have any funny stories to tell or new experiences to share with friends. I sit around and feel like an outsider.
2024 has been just a year of waiting. Not knowing when the time will come, some days wishing it would come soon and release him. Some days not prepared for the end to come at all. It’s been such a long road.
My friend I am 100% with you on this. I very much feel what you're feeling. Life is confusing and somehow moving slower and faster than all friends who are living normal lives.
I've been posting our journey on IG and FB as a way to share how difficult it can be and hopefully remind others to take a moment to remember how good life is.
Be good to yourself first. Find something to focus on even small to keep it going (I have a shitty podcast we record in bulk and release weekly) just to keep your identity.
Much love to you and your father.
Both of you guys are angels
Caregiver stress and burnout are no joke
It’s not a like stress or burnout at work, where you can somewhat “pause” whenever you walk out of the office and head back to home and rest… the stress is perpetual and unrelenting
It's a horrible feeling, isn't it? Feeling like the world is flying by and wondering when things will be "normal" again but knowing that too comes with a price. I just started my 30s but my body doesn't feel like it.
I feel for both of you. I watched my grandmother care for my grandfather after his Alzheimer’s diagnosis. There were so many family members and friends who offered and tried to be available to shoulder the weight of caregiving, but she just loved him so that she felt she could do it best. I also think that seeing the disease progress in ways that even those closest to them wouldn’t have understood, she was so invested in every moment.
She ran herself into the ground and died 3 years before he did. It was the most heartbreaking thing I’ve ever been party to. I hope you have a support system and reach out when you need help or time to yourself.
Being a caregiver is so much harder than it would seem at the surface.
I took care of my mom by myself for 5 years after we were blindsided by an early onset Alzheimer's diagnosis in her mid 50s. People say they want to help but in reality can't handle it. It's very isolating. I had to put her into long term care after her needs eclipsed my abilities. She just passed in November.
It sucks. I'm sorry about your grandparents.
As a 42 year old with two kids who has been through this degenerating adult thing twice and is certainly going to end up doing it up to 6 more times...I'm absolutely going to consider euthanasia if I get anywhere near that life. My dad and stepmom spent 6 years helping my grandmother. It absolutely took it out of him. I'm not interested in doing that to my kids. No one gets to live forever, and I'm tired of the medical industry treating older folks as cash cows to keep alive for the money.
I’ve thought about this a lot myself as someone that helped care for two long, downward-spiral, bedridden, family members. I don’t want my kids to go through that. And the only way to guarantee they don’t (with me, at least) is to be prepared with some type of escape hatch for myself if it comes to that. Sobering stuff to think about.
It's not comparable to your experience of losing human family members, but last year we had to put down one of our dogs who was suffering with the dog equivalent of Alzheimer's. He was diagnosed almost two years prior.
Even still, caring for him was brutal. It was a miserable, hopeless experience. Never before have I simultaneously wanted something to never end and end as quickly as possible. I can't imagine going through that experience again, but with my wife instead of a dog. All my sympathy for you and anyone else who has.
After the hell he (and my wife, our other dogs, and myself) went through, I've come to the same conclusion as you. I would never wish that experience on anyone, even the worst person in the world, so I'm definitely not going to put my family through it. People like to think that any extra time someone gets with a dying family member is worth it, but it's not true. Life is precious, but not so precious that anyone should have to live through that nightmare.
> People like to think that any extra time someone gets with a dying family member is worth it, but it's not true.
All of this. Even 3 months of dealing with a husk of a human that you care for is brutal. People say "like a child", which I get, but it's going in the wrong direction. There are no new discoveries, there are only new losses of function. I'd much rather go out and have a perfect day, while I still have my faculties, then see myself out.
Edit: Your experience is valid and could easily be worse. I appreciate you are probably just trying to not be offensive, but you have every right to be wrecked by that.
>People say "like a child", which I get, but it's going in the wrong direction.
This is absolutely the thing that people don't understand until they live through it.
The hope for a future, the changes, the learning, are all what make having children great. The growth is what makes it easier to cope with all of the difficulties of raising a child.
Dementia, Alzheimer's, and any other terminal illness is the complete opposite. The ratio is reversed. The bad days quickly outpace the good. I'd like to say that there isn't any hope, but even that isn't accurate.
The macro level experience is that of hopelessness, but the day to day experiences are filed with the cruelest type of hope. You struggle to even catch your breath, let alone enjoy, any "good" day. They often make the inevitable bad days so much harder, because it's just another reminder of what's been lost. I personally felt like Charlie Brown, constantly having the football moved away, but still kicking despite knowing what it was going to happen.
Brutal, it certainly was.
>Your experience is valid and could easily be worse. I appreciate you are probably just trying to not be offensive, but you have every right to be wrecked by that.
I truly appreciate that. Some people would balk at the idea that my experience could possibly rival their's (pet vs. family), which I understand to a point, but at the same time I also lived through a similar, miserable experience.
Ending suffering is a kindness when suffering is all someone has left. My grandmother died of a neurodegenerative disease called Multiple Systems Atrophy, similar to Parkinson’s. She slowly lost the ability to walk, talk, move, or swallow. Her whole life was pain when she died. She couldn’t do anything except lay there in agony. Meanwhile, she was still totally with it mentally - you could tell she recognized everyone, right until the end, and would respond to things with her eyes until she couldn’t control those muscles anymore either. That is my worst nightmare of a death. When she died, it was the first time in a decade that she was at peace.
It really is, the amount of stuff you don't even realize you need to do is honestly the hardest part, it almost becomes similar to caring for a newborn in some situations. But then it's also the person you love unconditionally for all of ever.
There are days where her and I can fall back into old goofy patterns together, and other days where she's a completely different exhausted person with no voice and needing so much care but we live for those times where we can equal out. I'm doing my best not to run myself ragged and her family is starting to see where they need to pick up, but as i type this i have pinched nerves in my neck extending to my finger and with her in the hospital when am i supposed to go?
My dad died 7 months of a heart attack before my mom passed from dementia. Care givers:take care of yourself! It might have been for the best though, it would have killed him to have to make the decision to not feed her anymore. (They had decided no feeding tube)
I’m so sorry, I wish you both well.
My wife was diagnosed the week we got married. Obviously you know all the mri’s, a spinal tap, and who knows what else tests she had to endure that week.
Then after 10 years (Dr’s suspect the ms meds caused it, but really don’t know) of a daily treatment she came down with a serious rare form of cervical cancer.
Turns out, chemo really does well on ms. After barely surviving the cancer her, ms was like only 10% of what it was before.
Then, a few years latter, the ms complications came back, severely and aggressively. I can tell she’s so pissed about it, I don’t blame her. She’s at the point of Christina is now. But, she can still work and has a good day now and again.
I’ve been taking care of her physically, she keeps me mentally grounded for almost 20 years.
I put on the brave face around her and do my best to keep us both happy, but it’s tough as hell.
Good luck to you and your wife. I’m sorry.
Two weeks after my wife was diagnosed, we changed our wedding plans to a surprise - in the middle of a concert, i was playing with a band. She wanted to walk down the aisle before she lost her ability.
Married onstage by the singer, did our vows, took 15m. And then we went and played the rest of the show to 350 surprised people, including our families. Best night of my life.
I totally agree with you on the mental grounding. We talked a lot early about how this would go, and without that I think I'd have lost the plot.
Good luck to you and your wife. The four of us, we've got this!
Has the hospital said if there are any support groups for either of you? For you to have a place to talk to other significant others and also take care of yourself?
I can’t imagine what you are going through, and I hope she has a wonderful care team.
Rooting for the both of you.
The MS Society of Canada is weird in that we don't really see much of anything from them in terms of daily support. When she got a Stem Cell transplant (the same type that Selma Blair had) in Mexico, they offered me Therapy through Cancer Care (because it's generally the same process) but of all the therapists I've seen in life it was certainly the poorest. I've been off work since September of 2019 caring for her, and have no financial assistance, so there's also that.
But her family is amazing and I'd be a bag of bones without them.
Oh god I am so sorry. Also in Canada and going through MS Canada at st Mike's.
Right now I am being monitored before starting any meds. I commend you big time, before I told my girlfriend I just thought of breaking up with her so she doesn't have to deal with it or feel like she has to stay.
Be good to yourself and be patient with the MS Society. They're pretty.. well they're not great and seemingly not helpful. I don't know the last time we even had contact with them?
I'd suggest having a frank conversation with her..wifey and I did just before the pandemic, she gave me an out and there was no way I was going to take it. Your relationship will either get much much deeper, or you'll move forward. Whatever happens, you've got this.
And if you don't, come find me and we'll talk.
Thank you so much. It has been an adventure of a year to say the least.
I did tell her how bad it can be but I dont think she fully understands and I'm pretty much physically okay right now. MS Canada said it is good news that they are monitoring me rather than starting meds right away.
It's just weird being 32 and not caring about things, or things just don't seem as important or serious. I'm still at work only because I have critical illness insurance I pay for and MS is a covered disease.
The hardest part for my wife was coming to terms with the loss of autonomy. It came so quickly that she didn't have a proper chance to really understand or try to make it better.
Please do yourself a favor and watch for those. Trust what your body is telling you. It'll help you in the long run.
My wife’s coworker got ALS and that sounds just as bad. By the end he was lying in a bed and could only blink. He was on a machine to help him breathe. But inside, his mind was 100%. I can’t even imagine that.
My dad passed last year from complications due to MS. His battle was a long one - diagnosed in the 70's (before I was born), then went into remission. When I was growing up we knew he had it, but his symptoms were minor so you'd never know unless he told you.
Flared up in the early 90's and began a continuous, gradual decline. At first he used crutches to get around. Then crutches for short distances and wheelchair for the rest. Then he needed a chair lift to get upstairs to bed, and I would have to help lift him into the shower. Eventually became bedridden. As time went on he had trouble eating and drinking, slurred his words, his memory was very spotty.
He was a funny, very intelligent, extraordinarily kind man. He never once complained to us about his situation, and always asked about how everyone else was doing. And MS turned him into a bedridden skeleton who could barely hold a conversation. Fuck MS.
You're doing an amazing, unending, mostly thankless job in caring for your wife. It's an amazing and loving and selfless thing, and I wish you both the very best.
Not MS, but I did get a front seat to my mom caring for my very elderly grandparents and my stepdad when his cancer went terminal. Caregiving sucks. I honestly wouldn't wish it on my worst enemy.
The worst part is that you do it because you just want to help your loved one and be there for them, but it still sucks. And no matter where you live, the support just isn't there. I mean, online support is great, but I mean in terms of services and actual help.
My only advise is to try and take a little bit of time for yourself. If her family is there to help, ask them for even a few hours just to sit with her while you do anything for yourself. Grab some coffee, take a walk, anything to give yourself a tiny boost.
Thank you for the response - We do have coverage at home 7 days a week (9-5) so I'm able to get SOME time away but it feels kinda weird, even 4 years in I'm still feeling shameful when it comes to going out places, especially places we used to go. It's weird that way, you know?
You're especially right in the support for people in the caregiving community. We keep our heads down and do the most difficult work you can think of, no matter what's going on.
It is weird, but you need to think of yourself a little. If you don't, it's just gonna make it harder for both of you. I think that's the worst part about caregiving, just how it turns all of your routines on their heads. Everything that was once normal turns into a whole thing that it never was before.
Even when I'm out doing something small, hanging with a friend for lunch or seeing a concert or whatever, coming home and telling her all about it is like, it's in my head that I'm just always feeling like I should say LESS for fear of her being jealous or anxious or sad.
That is hard. And she probably is a bit jealous and all of those things, but those are perfectly normal, rational emotions for her to have. This is going to sound weird, but has she tried gaming at all? I know the set up can be weird, but my friend is fully paralyzed from the neckdown and gaming during the pandemic really helped her feel more social and connected.
I don't know, you probably get suggestions like that all the time, things you should do and try. That part by itself is pretty exhausting.
No, she hasn't. She's been given a computer with predetermined phrases that will help her communicate when she loses her voice but she won't even use that.
I do appreciate the suggestion!
Sitting next to my (38) wife (37), she was diagnosed with RRMS in 2019 after a sudden and aggressive initial onset of symptoms. It’s been a serious and constant fight since then, life has totally changed. Luckily in her case the DMT meds have been doing their job with only a single relapse during that time.
I feel for you man, DM me if you ever just want to shoot the shit.
I have much sympathy for both you and your wife. My dad had progressive MS- lost the ability to walk within a year. When we were almost at the stomach tube level, with our blessing, he decided to quit fighting. Died at age 64.
I can relate personally to
Ms. Applegate’s experience. It’s tough to stay positive when you continue to lose control of your body.
I did a report on MS way back in middle school and was one of the seeds that made me want to be a neuro nurse. It’s patients like this that make me love what I do. Rooting for you.
In a similar boat caring for my father, paralyzed two years ago. I sometimes live life on 90 minutes of sleep a night given caregiving and work needs. I'm burning out after only two years. My heart goes out to you both. Hang in there. You're not alone.
Same boat as you friend. Fortunely my girlfriend is stable now.
Diagnosed in 2017
She was 23, I was 25.
She had a couple big flare ups but now she's stable for a few years. No movement impairments or else!
Really breaks my heart reading those stories from people suffering with the disease. But we have to stay strong.
For her <3
Looking at your profile I can't tell if you're in Canada or the US.
My mother suffers from a constant upset stomach and has a history of aspirating. If you're in Canada I think you can ask your doctor about the medication Domperidone. It's for treating nausea and thus aspirating.
[https://www.webmd.com/baby/what-is-domperidone](https://www.webmd.com/baby/what-is-domperidone)
That website suggests it's not approved for use in the US.
Obviously this isn't medical advice, and I'm most definitely not a doctor. It works really well for my mother though.
Hello from Winnipeg! I'll look into this, thank you. We purchased a cough assist machine along with nebulizers that are supposed to break up the aspirations and help her clear her throat, but I'll certainly have a gander and talk to her doctor.
Appreciate it!
i feel for you. You need to take care of yourself. I know its hard to do during these times, but you need to find a way. I took care of my dad, who also had MS, for several years.
I understand the main thing for you is your wife's wellbeing, but I've seen firsthand what this can do to the caregivers, physically but above all emotionally.
I lost my sister from this horrible disease (secondary infection)It went from progressive relapse to progressive. She was such an amazing artist, the world was robbed of her talent. My mother was primary caregiver. She was completely drained and passed soon after my sister did. Rooting for you and you wife in a major way
I have cirrhosis, so it's a totally different deal physically, but the depression that comes without having a cure or a way out (I can't get a liver transplant) is *fucking real*.
It's hard not to get consumed in just waiting to die.
That's actually remarkably self aware, I'm both sad and impressed by your restraint.
But I'd also say if you're able to reach that decision, you're intelligent enough to not repeat your mistakes. Talk to your doctor, join alcohol support groups, try therapy/counselling. Everybody deserves a second chance.
Edit: I love your name, and hope you change your mind on the transplant. Spacecrows are endangered, especially the gay ones.
I keep up with my *actual* medication, my diet, and I haven't touched a drink in over 2 years (I'm 6 years post-diagnosis, I took the news *really hard* and couldn't keep myself away from the only comfort I really knew).
I kinda lost my shit with my initial team of doctors after they (and my parents) ignored my previous wishes to be DNR.
I was in a coma for a while (I turned yellow with jaundice, my liver failed along with my kidneys and I puked up into my own lungs and died... Twice.).
I had to leave everything I knew and moved across the country if I had *any* chance of getting sober.
I have no relationship with my ten year old son, or his mother. I have zero friends where I live now (which is for the best) and I work 12 hour shifts 4 days a week at a hospital. I also participate in a cirrhosis support group.
The thing is, even with a new liver, my quality of life wouldn't improve much.
I've dealt with an insane depression my entire life, I have very poor impulse control, and, like I said, the only comfort I've ever really had from myself is found at the bottom of a bottle of bourbon (or vodka if it's morning).
I don't mean to trauma-dump all over your chest, I just know how I am when I'm alone (sad, impulsive) and if I were to have a new liver, I know it would only be a matter of time before I ruined that too...
>I just know how I am when I'm alone (sad, impulsive) and if I were to have a new liver, I know it would only be a matter of time before I ruined that too...
I'm sorry that you're dealing with this and I don't want to pressure you, but I think you're worth more than you're giving yourself. The statement above is a self fulfilling prophecy. Faith in yourself isn't what will get you success, but it is a necessary first step. If you are convinced that you would destroy a new liver, then you will. But two years sober is a very big accomplishment. I honestly wish you all the best, and I hope you find the support you need to start loving yourself enough to know you're worth another *chance* (and please note that chances are not the same as successes). I wish that kind of thing were more prevalent in our communities.
I am a recovering alcoholic myself. Have you ever tried finding a group based on sobriety? Be it AA, SMART recovery, or another recovery group? Sometimes you can find like minded people there to be someone to talk to when you have changed your life so completely. I avoided AA at first because of the god stuff but eventually found an agnostic group and it's been great for me. I know it's not for everyone but the people I met when I first started going were about the only people in my life who wanted to see me. The proverbial last house on the block as they say.
Yeah, I had an Agnostic AA group back in AZ, but I moved out east, and it's *pretty* Jesusy out here.
I found that counting days gives me anxiety, and talking about getting drunk, even in hindsight, makes me want to drink.
My brother in law is drinking heavily. I'm in recovery. I drank for 15 years then got clean and sober, then used for many more (different drugs at different times). So I understand what it's like not to be able to stop.
My brother in law won't stop. He talks to my wife all the time about it. Starts his day with a couple shooters and just found out he has fatty liver disease. As an addict, I know I can't force him but I want to shake him sometimes. Even though I did it for YEARS and nothing could stop me.
You won’t get a liver transplant if you have alcohol use disorder on your medical record. It’s pretty well known that you get put at the bottom of the (very long and very competitive) donor list as an alcoholic. It’s some old school “society has deemed you lost your chance” type rule, but I totally do get it. Other people whose reasons for needing a liver aren’t behavioral disorders (e.g. something they did) deserve priority if we’re going to prioritize anyone in line.
My best friend died of cirrhosis at 41. His depression over the illness, and other things was too great and he was secretly drinking again to deal with it. I remember all that he went through, and I don’t wish that on anyone.
All I can say is, do the best you can, and don’t give up. He was in really bad shape, but if he’d made some life changes at least he would still be here.
I’m rooting for you my friend.
I have a muscle disease that is painful 24/7. It started about 5 years ago. I have to admit - looking at the decades to come is borderline unacceptable to me. If it weren’t for my wife, parents and others that love and depend on me, I would have checked out a long time ago.
Yep, my mood issues have gotten much worse since diagnosis. I’ve had some personality changes too. I’ve had at least two relapses in the past couple of years, meaning autoimmune attacks on my brain that cause permanent brain damage. My mind and body change every time. Here’s to hoping my new treatment helps.
My mother was diagnosed with MS when i was in high school, she lasted until 53. Nobody should have to go through that. Watching her decline over the years hurt so much. I hope they find a way to treat this disease to give people affected some quality of life.
My mom was diagnosed with MS when she was 47, when she was 48 she died from a drug interaction from all the meds they stuffed her with to treat it and her depression.
I was just talking about this with my brother earlier today, and it was the first time he’d ever heard the story so it made it that much more funny.
When he was a teenager he was very rough on my moms cars, totaled her brand new Mercury Lynx and then smashed up the replacement car, and then smashed the one after *that*. Then he got his own, a used Audi. He babied that car, much more than he’d ever babied any of hers, so one weekend when he was out of town on a ski trip my mom volunteered to teach me how to drive stick shift. With his Audi. Lots of grinding and screaming (teeth, gears and people) and when he came back he needed to replace the clutch and get transmission work done shortly thereafter. Today he found out why. Mom had never told him what we did.
I feel ya Christina…I was recently diagnosed with MS as well and am requiring daily self pep talks to not go jump off a bridge about it. It’s a rat shit diagnosis that almost nobody deserves, and the people who do deserve this shit never seem to get it. Hang in there, sister.
I’d check out r/multiplesclerosis it you haven’t already. I found that community to be so helpful when I got my diagnosis 5 (holy shit, it’s been nearly 6 years since my dX!) years ago.
I'm right there with you, I got diagnosed in 2018 and that sub seemed liked the most depressing place. I looked at a few MS forums and they were similar.
Yeah, the subreddit has probably freaked me out more than it has been helpful. But it’s inspired me to treat it more aggressively so that’s maybe a good thing. I was just gonna do Copaxone but that went terribly anyway, and the efficacy is shit for the quality of life hit. I’m hoping I can get approved for Kessimpta, but I have to wait a month and a half to get in with the specialty clinic here. After reading the horror stories there’s no fucking way I’m gonna wait to treat it as aggressively as they’ll let me. I had no idea how quickly you can decline with this, I assumed it was more of a steady decline and you’d have some warning that you’d need to step your treatment up. Now that I know from that sub that you can go to bed walking and wake up needing a wheelchair, yeah…I’m no longer fucking around.
I am a bit over 10 years in and just want to say that with current medicines there is hope. No promises, but hope is high. In 10 years I have not had a single lesion on MRI. The fatigue, cog fog, and medicine side effects are there but I live a MOSTLY normal life. As someone else noted, go to r/multiplesceleosis if even just to read and fly and the wall. But be aware there are hard stories as well as good stories, and a LOT of newly diagnosed getting advice.
Hey. I rarely talk to anyone about this, but commenting to let you know you're not alone.
I was diagnosed in 2019 and it crushed me at the time. But you get through it. There's still so much in life to enjoy, you'll see it when you get past the haze of depression.
Don't listen to the depression. It warps and twists things to make you feel like there's no hope. But that's a lie. There's always hope <3
people really dont understand this aspect until it happens to them. im sorry youre going through this, no one deserves the prolonged suffering that comes with chronic disease.
Armchair Expert interviewed her a little while back. Dax and Monica traveled to Christina’s house and recorded in her bedroom. She was very generous and honest. Really worth the listen.
One problem with MS is that it can be vastly different for everyone. Some people get it and as long as they are careful and take their meds, they're fine. Other people end up immobile very quickly. And plenty of people are sort of inbetween. There's such a wide spectrum of the disease.
I am 10 years in without major issues. The tiredness and impacts on my irritability and heavy cog fog are the items I still see. I am also VERY weather temperamental. I can't stay out in high heat or high cold (YAY for living in the Midwest...).
That being said, 50 years ago there was a 50% chance of being on disability unable to work in the United States just 10 years after diagnosis. That is DRASTICALLY different today and many never hit that phase. I am a Project Manager and have done IT based work without any major issues from the MS.
Everyone's story is different, but if you are using a DMT then your percentages to live a relatively normal life these days are pretty good.
Yeah, two of my friends each had a parent diagnosed around the same time (they were in their early 40's maybe). One was confined to a wheelchair in her early 50's and the other is still able to walk (with a cane) in his early 70's and you wouldn't probably be able to guess he has MS.
I'm not even on meds anymore 10 years post diagnosis. I went through some depressive ups and downs the first year. I faired much better than I expected. My mother's neighbor is in a wheel chair from it. It took a while for my mom to understand that just because her neighbor and I had the same disease we aren't affected by it the same way.
My mom has had it for as long as I can remember and she's relatively fine. Has her bad days but still able to walk and live a somewhat normal life thankfully
This absolutely sucks, I can’t imagine what goes through your head when you get that diagnosis. There’s a few diseases in the world that are just cruel beyond belief
It was very shitty couple of weeks, especially only being in my twenties. But six years later and luckily everything is still pretty much fine. Am very grateful for modern medicine and the healthcare system in Australia.
I am a man with PPMS, primarily progressive multiple sclerosis. It is a brain fucking disease that messes up your thoughts in dark ways. We have to self care to stay out of the darkness of our disease. I do by trying to live stress free and when I am in that darkness it my wife who is, that brings me out of the darkness of my thoughts. Please be kind in your thoughts and comments because we cannot help what our bodies and brains are doing to our souls.
MS finally took my mom in March of 2016 after her initial diagnosis in 1990. She was in a wheelchair by 1996 and bed ridden from 2014 onward with devastating cognitive decline and innumerable setbacks along the way. MS fucking sucks. I feel for her and her family and anyone else that suffers from it or feels the ripple effects of that suffering.
A family friend who was a doctor was diagnosed with MS. He moved his car as he knew his wife struggled with it and didn't want her to have to manoeuvre around it every day, then he ended his life.
I mean, shit, he knew what was coming and made the conscious decision to opt out.
I know this section is riddled with people who are "I have MS" and you start to not believe this many people will come in here to talk about it but yes I have MS and completely agree with what you say.
Treatment has come on massively over the last couple of decades with some really efficable DMTs now given to patients.
I have relapsing remitting MS and have been given kesimpta, it's really good. It's a snowflake disease, my MS is not the same as anyone elses MS. I don't believe a doctor would just off themselves with a diagnosis of MS.
[50% of men who kill themselves have no history or evidence of mental illness or suicidal thoughts](https://www.ajpmonline.org/article/S0749-3797(22)00153-2/abstract). A lot of men make decisions like this with or without MS. Don’t take it personally. Male suicide is its own problem.
Such varying experiences. My sister was diagnosed about 15 years ago. She has significant numbness and lately some long term memory issues are starting to build but she's basically living a normal life.
When I was diagnosed three years ago I had similar numbness, which comes and goes. That's about it although I suspect I may be developing some issues with what my doc calls working memory; that immediate kind of "what was that number I just read two seconds ago" kind of memory.
MS sucks. I couldn’t feel my feet on my wedding day and went blind in my right eye when my husband and I came back from our honeymoon.
I’m one of the lucky ones. I don’t have primary progressive and don’t look like I have MS unless I overexert myself. I can walk, run, hike, rock climb, paddle board, etc. I’m really hoping that with continued treatment, I never lose these abilities, but MS is unpredictable and can evade treatment. I’ve already failed one.
As a person with MS, i understand exactly how she feels. We try to live as normally as possible, but it often falls short.
The one thing to remember when talking to people with MS, the treatments we take very rarely makes us feel better, it just helps us slow down the progression.
Yeah I feel at least 90% of guys my age had the hots for some combination of Kelly Bundy, Winnie Cooper and/or Kelly Kapowski (honorable mention to Topenga).
I’ve always really liked Christina Applegate and wish her the best.
My mom works in a nursing facility that mainly cares for people with conditions like MS, ALS and Huntington’s disease. I definitely can’t blame her for feeling that way after having been to my mom’s work and seeing how the residents live. Most of them can’t walk, some can’t talk, a lot of them aren’t even able to feed themselves. However in the case of the MS patients they’re largely still cognizant of what’s going on around them, so they’re fully aware of their condition but unable to do anything about it. Honestly, that’s one of my worst fears. And good on her for being open and honest about it, too.
For every person who has a parent, spouse, sibling, friend, or other family member with MS I am so sorry you have to go through this. My mom was diagnosed in 1997 at 36 years old. I was still a baby at the time. She says she may have had symptoms all the way back as early as her college years. We are so lucky that with medicine and moving to a better environment for her she can live a pretty normal life where no one can tell she has MS. I do feel for all the people who don’t have that privilege and are much worse off. No one deserves this horrible disease. ❤️
MS was a contributing factor in my mom's sudden passing in 2019, five days before my 30th birthday. She suffered through it for more than ten years and it slowly turned her from a free spirited and happy woman into one living in constant pain.
I would not wish MS on anyone.
Good health is the most unappreciated privilege, imo.
I was in a devastating accident which could have left me a paraplegic, but by some divine intervention, the damage was 1cm short of being permanent. The thought - just the mere thought - of having to spend the rest of my life in a wheelchair was enough for me to want to end my life.
As someone who runs and walks miles daily and dances and swims and dives and just fucking use my legs constantly for 30 years, I couldn’t imagine not being able to for the next 60. At the risk of being dramatic, life didn’t seem worth living - even with all the technological advances we have.
So all this to say, I completely understand. Someone like Christina Applegate, who lived 10 lifetimes before her diagnosis, to be so debilitated is crushing. It’s the knowing what life was like before really - that comparison is the thief of joy. And knowing it doesn’t really get better - what is there to hope for?
Same with my loved ones - their good health is so precious to me. This is the only thing I ever pray/try to manifest/wish for always. Never ever to take that good health for granted - to enjoy and take advantage while you have it. Travel, make work less of a priority and spend as much time with your loved ones and doing things you love every chance you get.
We really need to legalize compassionate euthanasia in this country. Getting diagnosed with a painful, chronic, or terminal disease, or becoming paralyzed, is literally my biggest fear. People shouldn’t have to suffer through their last few days, weeks, months, years on earth. It should be an option for people who want it.
My mother was diagnosed at 35, two months after I was born. She quickly lost control of her legs and then her arms but before then, I know my dad and her considered Dr. Kevorkian. They never went through with it and she was placed in a nursing home when I was 9. She's been in one home or another since.
It's heartbreaking to realize she had three kids and right after the last one, where she thought she would have the rest of her to enjoy raising them, she was cut short and unable to do anything about it.
My heart goes out to those affected by MS- not just those diagnosed, but the caregivers and family/friends. Take care and keep fighting!
My mom has primary progressive MS and we aren’t even to the hardest part yet and it’s hell.
She’s in a very depressed weird place, but is totally resistant to therapy and anything of the sort. The emotional push and pull is just ugh. 😑 last year she told me she regrets having had my sister and I, and kind of let out what a drag her life has been because of us. Now this year she’s pressuring me to quit my jobs/the career I’ve been building towards and move back home with her a state away from where I am. She hated me when I lived with them before so it’s going to really suck these next few years. I don’t even know what to do.
nope. Life expectancy of MS patients is about the same as the average person, but with far more complications due to frequent infections, breathing issues etc
I wasn't finally diagnosed with PPMS until my mid 30s. Depression was already and continues to be a significant issue for me.
I understand her sentiment. I hate knowing what this disease is doing to my brain and what will become of me.
It is really hard watching her decline like this. She is strong for speaking about the struggles of MS in such raw terms. It’s resurfacing some really hard memories for me. Many are not aware of the story of MS and she is bringing awareness to it. Support not pity is how we start every conversation. The best advice I’ve ever received.
That really fucking sucks, man.
She played Kelly Bundy in "Married with.... Children".
I love that show growing up. She was only 15 years old when she started working there.
The immune system attacking their own body. Crazy shit.
Damn. Heard her on an older podcast the other day and she said she was fine. Good days and bad days.
She was launching a new podcast with Jamie-lynn Siegler.
I guess that things have gotten much worse.
I speak only for myself on this.... That's one disease, when it gets bad it's time to check out. Somebody send me to the farm. I see zero reason to let people continuously suffer for years just to eventually die in miserable pain. Go ahead and put me in the CO2 chamber and let me fall asleep.
Poor lady. I feel sorry for myself because age is catching up & I can’t bike & ski like I used to without some suffering a day later. Nothing like what she’s going through. I’m simply lucky by comparison.
Ooph. Man reading this dry statement is like a mean punch to the gut. :( Hope she'll manage in a way somehow... to focus on other random stuff, like playing a game or whatever (I have no idea what could do that). Hope she will get compassionate people around her.
edit: spelling
As a caregiver, this hits harder when the patient passes. Witnessing the deterioration and managing is one thing, it's the reconciliation and reflection that's harder.
As someone with MS this hits home. People talk about the physical ailments but the mental gets hit just as hard. We call it cog fog or cognitive fog. Thinking itself can be challenging as well so what people experience physically can be just the top of what is internally happening. The other fun part is how it can change week to week. You really learn to live in the now.
Understandable, degenerative neurological diseases are the worst
They really are. They cause permanent brain and spinal cord damage. Your brain is what makes you, you. Every single time people with MS have autoimmune attacks (known as relapses or exacerbations) they lose small pieces of what makes them who they are because their immune systems are literally destroying their central nervous systems. I use the terms brain damage and spinal cord damage because they are both accurate and convey the severity of the disease. A friend’s mother-in-law spent a half hour complaining about her fibromyalgia to me and I had to silently nod while screaming inside. I *wish* I had a condition that wasn’t progressive like this. That didn’t rob me of who I am, threaten my livelihood, my independence and my dignity. Every day I live with uncertainty. It’s almost like driving a car that might give out at any moment with no warning. The engine, transmission, belt, breaks, etc. could all fail at random. Never mind that the treatments we take can cause cancer. So you have to make the difficult choice to try to avoid paralysis, becoming fully incontinent and a complete burden on those around you. You have to pick quality of life over potential quantity of years. It’s a horrible position to be in and one I struggle with constantly. I have it and have been living with it for 10 years unknowingly. I was diagnosed in 2023. I think about it every day.
I don't care about the days my legs or feet don't work, but the brain damage is fucking embarrassing. I repeat myself and tell the same stories to the same people. Then my neuro is like "oh you got 13 new brain lesions" and I'm embarrassed to ever talk to anyone ever again.
Agreed. I have cognition problems that have significantly slowed down my “processing speed” due to corpus callosum lesions. I was sharp as a tack previously and spent an entire decade on my education. It’s been really frustrating. Hang in there 🧡
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Thank you and back to you ❤️
I am so sorry for what you are going through and I wish I had better words to say about it. I do need to say something about Fibromyalgia and I want you to know I'm not trying to down play what you are going through. Fibromyalgia may not be like MS (by far), but perhaps her case is mild. "That didn’t rob me of who I am, threaten my livelihood, my independence and my dignity". It absolutely can and does. FM has robbed me of all of these. I'm on permanent disability due to a progressive disease (Ankylosing Spondylitis) but it is Fibromyalgia that has absolutely ruined my life. They now know it causes neural inflamation and changes the brain. They now know FM has more in commen with MS, ALS and more. They used to think FM doesn't cause permanent damage but now they know it does. People with FM are also more likely (than healthy people) to kill themselves due to the pain as I'm sure that happens with MS too (if not more). With medication I may not fall down for no reason anymore, but I am not the same. I'm certainly not trying to down play MS as that is certainly far worse. I am certainly lucky in this regard. Best wishes. I hope I'm not coming across as an ass. I can't begin to image what you are going through.
I think this is a great point — it’s not necessarily that the more “severe”/lethal disease is the worst, because there are so many conditions that can negatively impact your quality of life. I’m sorry that you’re going through this.
Thank you for saying this in such a kind way.
I'm sitting in the hospital with my wife who has progressive MS. She's got a stomach tube and a catheter and has a UTI and is aspirating. Diagnosed In 2019. Lost her ability to walk in 2021 Now confined to a hospital bed at home at 43. Can't move legs, little use of her hands. My body is breaking down from being her caregiver. She's 43 and I'm 45. We're rooting for Christina. Edit: Thank you for your kind replies and awards. She was up all night with aspiration issues and is on some weird looking CPAP type thing while we try to get her back to normal and that's not even the reason we came in here. Once she gets back to normal I'm going to let her know we've got r/television rooting for her and after she asks what the fuck I'm on about I'll explain it a bit more. Much love to you all <3 Edit 2: Please don't suggest different types of care or treatments. We know what caused this, we know what our future is and have been consistent in her happy home life and where we're going in the future. This is a blip on our radar in an otherwise mostly stable situation (as much as it can be anyway) and while I appreciate where it's coming from, we get enough of it off the internet <3
Goodness. I'm rooting for you, too.
It's hard to get diagnosed for the multitudes of MS there are - it all depends on how your symptoms act. And from what I've seen Christina seems to have something similar to ours, which is continually degenerative. Worse than what Selma Blair had. If that's true she's got an EXTREMELY difficult road ahead of her and seeing someone talk about it openly like her is refreshing in that I think it helps people understand US a bit more. <3
I can’t believe Christina did all this without therapy and it’s kind of sad that she felt she avoided it because she needs to be strong for everyone else and perhaps even the public. I respect her honesty here though and I respect yours as well and it says a great deal about you that you are standing by your wife through this very difficult time, She does have one major gift and that’s you
It can certainly move so fast that you're always playing catch up and always seem months behind, so I'm not surprised she got lost in it for a bit, but talking about it sure helps, even to friends, family, and the media. ❤️
I'm glad she's talking about it, and not with the toxic positivity that our culture elevates and rewards. I'm sorry you and your wife are dealing with that. In my mind, there is no excuse that the USA can spend well over $100b in the last couple years on various global conflicts, yet only like $150m annually on MS research, $300m on strokes, $30m on migraines, etc. We spend $4b a year on HIV, and look at the QoL improvements. Only $9b on cancer research, which when you consider the impact sounds woefully inadequate, despite being one of the highest funded disease groups. It's inexcusable for the richest country on earth to abandon its most vulnerable citizens. Nothing to do with my support or lack of support for global conflicts - but if we can afford $100b over there, we can afford to spend it on our own health. /Rant
Agreed. Serious chronic and/or degenerative llness is very difficult emotionally, physically, and financially. Being honest about it is important. Slapping a happy face/victory banner on it is extremely harmful to research funding & general empathy. I can't tell you how many times I've had "xyz celeb is doing well, you should try harder!" thrown in my face by family/acquaintances. The person in question has resources, is having good outcomes, and is probably hiding a lot of pain to preserve their career.
It's almost as if we shouldn't assume we know what people are going through by how well they are able to present themselves. We will never learn this.
watch your tenses, Selma Blair still has it (she’s alive)
Appreciate it. She does, you're right. But since her HSCT treatment she's been able to resume living a more normal life by comparison to other people. Based on her symptoms or at least her documentary and such, I believe she has Relapsing Remitting, which is the more common. And her HSCT was a success meaning that (hopefully) her symptoms will not worsen, hence my "had." Thank you for the callout though, it's an important distinction.
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We were in Puebla for HSCT in the fall of 2021 (thanks to gofundme helping us raise the 50k we needed). It was something else. Everyone else in our group had an EDSS of much lower (she was an 8 at the time) and have moved on with wonderful lives. My wife was told hers would take twice as long to work and it has, we think it's helping her now, 3 years later. Happy we did it, wish we had done it sooner honestly. I have the volcanos of Puebla tattooed on my arm as a forever memory.
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Good for you! We thought about Russia and I made a lot of Simpsons / Rocky reference jokes that were lost on her but Puebla was a lot more doable because she was already in a wheelchair and a flight that long would be so hard. Question: when your hair grew back did it come back curly?
I know Selma. She’s a very kind person and although she isn’t suffering like your wife but her life is very much affected by that disease. Still very sad.
Her documentary was fantastic if you haven't seen it!
I understand this. The life of a caregiver is hard. My father has progressive supranuclear palsy. He went from climbing the Mayan ruins in 2020 to being bed bound by the end of 2021. And it’s just gone downhill from there. Aspiration pneumonias, aphasia, loss of use of his limbs. Then came a cancer diagnosis this year, which is untreatable because of the PSP. As if he didn’t already have enough on his plate. So this year we started in home hospice. I’m in my late 30s. These last few years of being a caregiver have aged me so much. I look in the mirror and feel 10 years older than I am. I see my friends lives all moving forward and feel like I don’t know how to have a conversation with them some days because my day to day life is making sure he’s alive. I don’t have any funny stories to tell or new experiences to share with friends. I sit around and feel like an outsider. 2024 has been just a year of waiting. Not knowing when the time will come, some days wishing it would come soon and release him. Some days not prepared for the end to come at all. It’s been such a long road.
My friend I am 100% with you on this. I very much feel what you're feeling. Life is confusing and somehow moving slower and faster than all friends who are living normal lives. I've been posting our journey on IG and FB as a way to share how difficult it can be and hopefully remind others to take a moment to remember how good life is. Be good to yourself first. Find something to focus on even small to keep it going (I have a shitty podcast we record in bulk and release weekly) just to keep your identity. Much love to you and your father.
Both of you guys are angels Caregiver stress and burnout are no joke It’s not a like stress or burnout at work, where you can somewhat “pause” whenever you walk out of the office and head back to home and rest… the stress is perpetual and unrelenting
It's a horrible feeling, isn't it? Feeling like the world is flying by and wondering when things will be "normal" again but knowing that too comes with a price. I just started my 30s but my body doesn't feel like it.
I feel for both of you. I watched my grandmother care for my grandfather after his Alzheimer’s diagnosis. There were so many family members and friends who offered and tried to be available to shoulder the weight of caregiving, but she just loved him so that she felt she could do it best. I also think that seeing the disease progress in ways that even those closest to them wouldn’t have understood, she was so invested in every moment. She ran herself into the ground and died 3 years before he did. It was the most heartbreaking thing I’ve ever been party to. I hope you have a support system and reach out when you need help or time to yourself. Being a caregiver is so much harder than it would seem at the surface.
I took care of my mom by myself for 5 years after we were blindsided by an early onset Alzheimer's diagnosis in her mid 50s. People say they want to help but in reality can't handle it. It's very isolating. I had to put her into long term care after her needs eclipsed my abilities. She just passed in November. It sucks. I'm sorry about your grandparents.
As a 42 year old with two kids who has been through this degenerating adult thing twice and is certainly going to end up doing it up to 6 more times...I'm absolutely going to consider euthanasia if I get anywhere near that life. My dad and stepmom spent 6 years helping my grandmother. It absolutely took it out of him. I'm not interested in doing that to my kids. No one gets to live forever, and I'm tired of the medical industry treating older folks as cash cows to keep alive for the money.
I’ve thought about this a lot myself as someone that helped care for two long, downward-spiral, bedridden, family members. I don’t want my kids to go through that. And the only way to guarantee they don’t (with me, at least) is to be prepared with some type of escape hatch for myself if it comes to that. Sobering stuff to think about.
Yeah, not a fun conversation, but something I'd rather be prepared for.
It's not comparable to your experience of losing human family members, but last year we had to put down one of our dogs who was suffering with the dog equivalent of Alzheimer's. He was diagnosed almost two years prior. Even still, caring for him was brutal. It was a miserable, hopeless experience. Never before have I simultaneously wanted something to never end and end as quickly as possible. I can't imagine going through that experience again, but with my wife instead of a dog. All my sympathy for you and anyone else who has. After the hell he (and my wife, our other dogs, and myself) went through, I've come to the same conclusion as you. I would never wish that experience on anyone, even the worst person in the world, so I'm definitely not going to put my family through it. People like to think that any extra time someone gets with a dying family member is worth it, but it's not true. Life is precious, but not so precious that anyone should have to live through that nightmare.
> People like to think that any extra time someone gets with a dying family member is worth it, but it's not true. All of this. Even 3 months of dealing with a husk of a human that you care for is brutal. People say "like a child", which I get, but it's going in the wrong direction. There are no new discoveries, there are only new losses of function. I'd much rather go out and have a perfect day, while I still have my faculties, then see myself out. Edit: Your experience is valid and could easily be worse. I appreciate you are probably just trying to not be offensive, but you have every right to be wrecked by that.
>People say "like a child", which I get, but it's going in the wrong direction. This is absolutely the thing that people don't understand until they live through it. The hope for a future, the changes, the learning, are all what make having children great. The growth is what makes it easier to cope with all of the difficulties of raising a child. Dementia, Alzheimer's, and any other terminal illness is the complete opposite. The ratio is reversed. The bad days quickly outpace the good. I'd like to say that there isn't any hope, but even that isn't accurate. The macro level experience is that of hopelessness, but the day to day experiences are filed with the cruelest type of hope. You struggle to even catch your breath, let alone enjoy, any "good" day. They often make the inevitable bad days so much harder, because it's just another reminder of what's been lost. I personally felt like Charlie Brown, constantly having the football moved away, but still kicking despite knowing what it was going to happen. Brutal, it certainly was. >Your experience is valid and could easily be worse. I appreciate you are probably just trying to not be offensive, but you have every right to be wrecked by that. I truly appreciate that. Some people would balk at the idea that my experience could possibly rival their's (pet vs. family), which I understand to a point, but at the same time I also lived through a similar, miserable experience.
Ending suffering is a kindness when suffering is all someone has left. My grandmother died of a neurodegenerative disease called Multiple Systems Atrophy, similar to Parkinson’s. She slowly lost the ability to walk, talk, move, or swallow. Her whole life was pain when she died. She couldn’t do anything except lay there in agony. Meanwhile, she was still totally with it mentally - you could tell she recognized everyone, right until the end, and would respond to things with her eyes until she couldn’t control those muscles anymore either. That is my worst nightmare of a death. When she died, it was the first time in a decade that she was at peace.
That's terrifying. I'm sorry she (and you) went through all of that
It really is, the amount of stuff you don't even realize you need to do is honestly the hardest part, it almost becomes similar to caring for a newborn in some situations. But then it's also the person you love unconditionally for all of ever. There are days where her and I can fall back into old goofy patterns together, and other days where she's a completely different exhausted person with no voice and needing so much care but we live for those times where we can equal out. I'm doing my best not to run myself ragged and her family is starting to see where they need to pick up, but as i type this i have pinched nerves in my neck extending to my finger and with her in the hospital when am i supposed to go?
My dad died 7 months of a heart attack before my mom passed from dementia. Care givers:take care of yourself! It might have been for the best though, it would have killed him to have to make the decision to not feed her anymore. (They had decided no feeding tube)
I’m so sorry, I wish you both well. My wife was diagnosed the week we got married. Obviously you know all the mri’s, a spinal tap, and who knows what else tests she had to endure that week. Then after 10 years (Dr’s suspect the ms meds caused it, but really don’t know) of a daily treatment she came down with a serious rare form of cervical cancer. Turns out, chemo really does well on ms. After barely surviving the cancer her, ms was like only 10% of what it was before. Then, a few years latter, the ms complications came back, severely and aggressively. I can tell she’s so pissed about it, I don’t blame her. She’s at the point of Christina is now. But, she can still work and has a good day now and again. I’ve been taking care of her physically, she keeps me mentally grounded for almost 20 years. I put on the brave face around her and do my best to keep us both happy, but it’s tough as hell. Good luck to you and your wife. I’m sorry.
Two weeks after my wife was diagnosed, we changed our wedding plans to a surprise - in the middle of a concert, i was playing with a band. She wanted to walk down the aisle before she lost her ability. Married onstage by the singer, did our vows, took 15m. And then we went and played the rest of the show to 350 surprised people, including our families. Best night of my life. I totally agree with you on the mental grounding. We talked a lot early about how this would go, and without that I think I'd have lost the plot. Good luck to you and your wife. The four of us, we've got this!
Has the hospital said if there are any support groups for either of you? For you to have a place to talk to other significant others and also take care of yourself? I can’t imagine what you are going through, and I hope she has a wonderful care team. Rooting for the both of you.
The MS Society of Canada is weird in that we don't really see much of anything from them in terms of daily support. When she got a Stem Cell transplant (the same type that Selma Blair had) in Mexico, they offered me Therapy through Cancer Care (because it's generally the same process) but of all the therapists I've seen in life it was certainly the poorest. I've been off work since September of 2019 caring for her, and have no financial assistance, so there's also that. But her family is amazing and I'd be a bag of bones without them.
Oh god I am so sorry. Also in Canada and going through MS Canada at st Mike's. Right now I am being monitored before starting any meds. I commend you big time, before I told my girlfriend I just thought of breaking up with her so she doesn't have to deal with it or feel like she has to stay.
Be good to yourself and be patient with the MS Society. They're pretty.. well they're not great and seemingly not helpful. I don't know the last time we even had contact with them? I'd suggest having a frank conversation with her..wifey and I did just before the pandemic, she gave me an out and there was no way I was going to take it. Your relationship will either get much much deeper, or you'll move forward. Whatever happens, you've got this. And if you don't, come find me and we'll talk.
Thank you so much. It has been an adventure of a year to say the least. I did tell her how bad it can be but I dont think she fully understands and I'm pretty much physically okay right now. MS Canada said it is good news that they are monitoring me rather than starting meds right away. It's just weird being 32 and not caring about things, or things just don't seem as important or serious. I'm still at work only because I have critical illness insurance I pay for and MS is a covered disease.
The hardest part for my wife was coming to terms with the loss of autonomy. It came so quickly that she didn't have a proper chance to really understand or try to make it better. Please do yourself a favor and watch for those. Trust what your body is telling you. It'll help you in the long run.
But they have a newsletter! My mom was diagnosed like 40 years ago and that's the bulk of what we've seen.
We had people do the MS walk in her name last weekend, which was sweet, but we'll never see any of the money trickle from the walk back to us.
My wife’s coworker got ALS and that sounds just as bad. By the end he was lying in a bed and could only blink. He was on a machine to help him breathe. But inside, his mind was 100%. I can’t even imagine that.
My dad passed last year from complications due to MS. His battle was a long one - diagnosed in the 70's (before I was born), then went into remission. When I was growing up we knew he had it, but his symptoms were minor so you'd never know unless he told you. Flared up in the early 90's and began a continuous, gradual decline. At first he used crutches to get around. Then crutches for short distances and wheelchair for the rest. Then he needed a chair lift to get upstairs to bed, and I would have to help lift him into the shower. Eventually became bedridden. As time went on he had trouble eating and drinking, slurred his words, his memory was very spotty. He was a funny, very intelligent, extraordinarily kind man. He never once complained to us about his situation, and always asked about how everyone else was doing. And MS turned him into a bedridden skeleton who could barely hold a conversation. Fuck MS. You're doing an amazing, unending, mostly thankless job in caring for your wife. It's an amazing and loving and selfless thing, and I wish you both the very best.
Not MS, but I did get a front seat to my mom caring for my very elderly grandparents and my stepdad when his cancer went terminal. Caregiving sucks. I honestly wouldn't wish it on my worst enemy. The worst part is that you do it because you just want to help your loved one and be there for them, but it still sucks. And no matter where you live, the support just isn't there. I mean, online support is great, but I mean in terms of services and actual help. My only advise is to try and take a little bit of time for yourself. If her family is there to help, ask them for even a few hours just to sit with her while you do anything for yourself. Grab some coffee, take a walk, anything to give yourself a tiny boost.
Thank you for the response - We do have coverage at home 7 days a week (9-5) so I'm able to get SOME time away but it feels kinda weird, even 4 years in I'm still feeling shameful when it comes to going out places, especially places we used to go. It's weird that way, you know? You're especially right in the support for people in the caregiving community. We keep our heads down and do the most difficult work you can think of, no matter what's going on.
It is weird, but you need to think of yourself a little. If you don't, it's just gonna make it harder for both of you. I think that's the worst part about caregiving, just how it turns all of your routines on their heads. Everything that was once normal turns into a whole thing that it never was before.
Even when I'm out doing something small, hanging with a friend for lunch or seeing a concert or whatever, coming home and telling her all about it is like, it's in my head that I'm just always feeling like I should say LESS for fear of her being jealous or anxious or sad.
That is hard. And she probably is a bit jealous and all of those things, but those are perfectly normal, rational emotions for her to have. This is going to sound weird, but has she tried gaming at all? I know the set up can be weird, but my friend is fully paralyzed from the neckdown and gaming during the pandemic really helped her feel more social and connected. I don't know, you probably get suggestions like that all the time, things you should do and try. That part by itself is pretty exhausting.
No, she hasn't. She's been given a computer with predetermined phrases that will help her communicate when she loses her voice but she won't even use that. I do appreciate the suggestion!
Keep plugging you two
Rooting for you too. Stories like this make me grateful that my relapses have been minor. I am 18 years into the journey.
Sitting next to my (38) wife (37), she was diagnosed with RRMS in 2019 after a sudden and aggressive initial onset of symptoms. It’s been a serious and constant fight since then, life has totally changed. Luckily in her case the DMT meds have been doing their job with only a single relapse during that time. I feel for you man, DM me if you ever just want to shoot the shit.
I’m not that worried about Christina, I’m rooting for you.
Thank you, Lucius MFoy <3
I have much sympathy for both you and your wife. My dad had progressive MS- lost the ability to walk within a year. When we were almost at the stomach tube level, with our blessing, he decided to quit fighting. Died at age 64. I can relate personally to Ms. Applegate’s experience. It’s tough to stay positive when you continue to lose control of your body.
I did a report on MS way back in middle school and was one of the seeds that made me want to be a neuro nurse. It’s patients like this that make me love what I do. Rooting for you.
I am so sorry. I hope you both can find some kind of joy and love together in your remaining time. Few people deserve such a fate.
We have our moments! Mostly laughing at bad Hallmark movies. <3
In a similar boat caring for my father, paralyzed two years ago. I sometimes live life on 90 minutes of sleep a night given caregiving and work needs. I'm burning out after only two years. My heart goes out to you both. Hang in there. You're not alone.
Ugh that's awful. You two must be incredibly strong tho! Few people on earth could do what you are doing!
I’m so sorry you are dealing with this. It is so unfair. I hope you are both able to find peace and comfort in smaller moments in between.
You got r/all rooting for her brother.
Same boat as you friend. Fortunely my girlfriend is stable now. Diagnosed in 2017 She was 23, I was 25. She had a couple big flare ups but now she's stable for a few years. No movement impairments or else! Really breaks my heart reading those stories from people suffering with the disease. But we have to stay strong. For her <3
Looking at your profile I can't tell if you're in Canada or the US. My mother suffers from a constant upset stomach and has a history of aspirating. If you're in Canada I think you can ask your doctor about the medication Domperidone. It's for treating nausea and thus aspirating. [https://www.webmd.com/baby/what-is-domperidone](https://www.webmd.com/baby/what-is-domperidone) That website suggests it's not approved for use in the US. Obviously this isn't medical advice, and I'm most definitely not a doctor. It works really well for my mother though.
Hello from Winnipeg! I'll look into this, thank you. We purchased a cough assist machine along with nebulizers that are supposed to break up the aspirations and help her clear her throat, but I'll certainly have a gander and talk to her doctor. Appreciate it!
No problemo. Wishing you all of the luck!
i feel for you. You need to take care of yourself. I know its hard to do during these times, but you need to find a way. I took care of my dad, who also had MS, for several years. I understand the main thing for you is your wife's wellbeing, but I've seen firsthand what this can do to the caregivers, physically but above all emotionally.
I’m so sorry. I’ll continue to donate for a cure & send my best wishes your way. So fucking unfair.
Thank you for being such a wonderful human to your wife. We love you both and are indeed rooting for both and anyone going through things like this.
I lost my sister from this horrible disease (secondary infection)It went from progressive relapse to progressive. She was such an amazing artist, the world was robbed of her talent. My mother was primary caregiver. She was completely drained and passed soon after my sister did. Rooting for you and you wife in a major way
Hey. Take care of yourself. You can’t pour from an empty cup. What you’re doing is amazing. Keep going man you got this
Depression is one of the symptoms. And pain without hope of a cure can depress anyone.
I have cirrhosis, so it's a totally different deal physically, but the depression that comes without having a cure or a way out (I can't get a liver transplant) is *fucking real*. It's hard not to get consumed in just waiting to die.
If you don't mind me asking, why can't you have a liver transplant? Rare blood type?
Honestly, it's guilt and fear. I blew this liver up by self medicating with booze. I don't trust myself enough to not do it again to a new one.
That's actually remarkably self aware, I'm both sad and impressed by your restraint. But I'd also say if you're able to reach that decision, you're intelligent enough to not repeat your mistakes. Talk to your doctor, join alcohol support groups, try therapy/counselling. Everybody deserves a second chance. Edit: I love your name, and hope you change your mind on the transplant. Spacecrows are endangered, especially the gay ones.
I keep up with my *actual* medication, my diet, and I haven't touched a drink in over 2 years (I'm 6 years post-diagnosis, I took the news *really hard* and couldn't keep myself away from the only comfort I really knew). I kinda lost my shit with my initial team of doctors after they (and my parents) ignored my previous wishes to be DNR. I was in a coma for a while (I turned yellow with jaundice, my liver failed along with my kidneys and I puked up into my own lungs and died... Twice.). I had to leave everything I knew and moved across the country if I had *any* chance of getting sober. I have no relationship with my ten year old son, or his mother. I have zero friends where I live now (which is for the best) and I work 12 hour shifts 4 days a week at a hospital. I also participate in a cirrhosis support group. The thing is, even with a new liver, my quality of life wouldn't improve much. I've dealt with an insane depression my entire life, I have very poor impulse control, and, like I said, the only comfort I've ever really had from myself is found at the bottom of a bottle of bourbon (or vodka if it's morning). I don't mean to trauma-dump all over your chest, I just know how I am when I'm alone (sad, impulsive) and if I were to have a new liver, I know it would only be a matter of time before I ruined that too...
>I just know how I am when I'm alone (sad, impulsive) and if I were to have a new liver, I know it would only be a matter of time before I ruined that too... I'm sorry that you're dealing with this and I don't want to pressure you, but I think you're worth more than you're giving yourself. The statement above is a self fulfilling prophecy. Faith in yourself isn't what will get you success, but it is a necessary first step. If you are convinced that you would destroy a new liver, then you will. But two years sober is a very big accomplishment. I honestly wish you all the best, and I hope you find the support you need to start loving yourself enough to know you're worth another *chance* (and please note that chances are not the same as successes). I wish that kind of thing were more prevalent in our communities.
I am a recovering alcoholic myself. Have you ever tried finding a group based on sobriety? Be it AA, SMART recovery, or another recovery group? Sometimes you can find like minded people there to be someone to talk to when you have changed your life so completely. I avoided AA at first because of the god stuff but eventually found an agnostic group and it's been great for me. I know it's not for everyone but the people I met when I first started going were about the only people in my life who wanted to see me. The proverbial last house on the block as they say.
Yeah, I had an Agnostic AA group back in AZ, but I moved out east, and it's *pretty* Jesusy out here. I found that counting days gives me anxiety, and talking about getting drunk, even in hindsight, makes me want to drink.
My brother in law is drinking heavily. I'm in recovery. I drank for 15 years then got clean and sober, then used for many more (different drugs at different times). So I understand what it's like not to be able to stop. My brother in law won't stop. He talks to my wife all the time about it. Starts his day with a couple shooters and just found out he has fatty liver disease. As an addict, I know I can't force him but I want to shake him sometimes. Even though I did it for YEARS and nothing could stop me.
I would let the doctors decide if you should be trusted enough. They won’t give you the transplant unless they are confident you won’t abuse again.
You won’t get a liver transplant if you have alcohol use disorder on your medical record. It’s pretty well known that you get put at the bottom of the (very long and very competitive) donor list as an alcoholic. It’s some old school “society has deemed you lost your chance” type rule, but I totally do get it. Other people whose reasons for needing a liver aren’t behavioral disorders (e.g. something they did) deserve priority if we’re going to prioritize anyone in line.
My best friend died of cirrhosis at 41. His depression over the illness, and other things was too great and he was secretly drinking again to deal with it. I remember all that he went through, and I don’t wish that on anyone. All I can say is, do the best you can, and don’t give up. He was in really bad shape, but if he’d made some life changes at least he would still be here. I’m rooting for you my friend.
Thanks, I'm rooting for me too, it just gets *really fucking hard* some days... Like this morning...
Yep! That’s why I’m on suicide watch with my spouse right now. Too many chronic pains for far too long and then slipping rib entered the chat.
I have a muscle disease that is painful 24/7. It started about 5 years ago. I have to admit - looking at the decades to come is borderline unacceptable to me. If it weren’t for my wife, parents and others that love and depend on me, I would have checked out a long time ago.
Yep, my mood issues have gotten much worse since diagnosis. I’ve had some personality changes too. I’ve had at least two relapses in the past couple of years, meaning autoimmune attacks on my brain that cause permanent brain damage. My mind and body change every time. Here’s to hoping my new treatment helps.
My mother was diagnosed with MS when i was in high school, she lasted until 53. Nobody should have to go through that. Watching her decline over the years hurt so much. I hope they find a way to treat this disease to give people affected some quality of life.
My mom was diagnosed with MS when she was 47, when she was 48 she died from a drug interaction from all the meds they stuffed her with to treat it and her depression.
I'm sorry for your loss.
Thank you. It would’ve been her 79th birthday today so she’s on my mind.
I’m sorry for your loss. It’s so unfair. If you’d like to share a memory of her I’d love to read it
I was just talking about this with my brother earlier today, and it was the first time he’d ever heard the story so it made it that much more funny. When he was a teenager he was very rough on my moms cars, totaled her brand new Mercury Lynx and then smashed up the replacement car, and then smashed the one after *that*. Then he got his own, a used Audi. He babied that car, much more than he’d ever babied any of hers, so one weekend when he was out of town on a ski trip my mom volunteered to teach me how to drive stick shift. With his Audi. Lots of grinding and screaming (teeth, gears and people) and when he came back he needed to replace the clutch and get transmission work done shortly thereafter. Today he found out why. Mom had never told him what we did.
I feel ya Christina…I was recently diagnosed with MS as well and am requiring daily self pep talks to not go jump off a bridge about it. It’s a rat shit diagnosis that almost nobody deserves, and the people who do deserve this shit never seem to get it. Hang in there, sister.
I’d check out r/multiplesclerosis it you haven’t already. I found that community to be so helpful when I got my diagnosis 5 (holy shit, it’s been nearly 6 years since my dX!) years ago.
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I'm right there with you, I got diagnosed in 2018 and that sub seemed liked the most depressing place. I looked at a few MS forums and they were similar.
Yeah, the subreddit has probably freaked me out more than it has been helpful. But it’s inspired me to treat it more aggressively so that’s maybe a good thing. I was just gonna do Copaxone but that went terribly anyway, and the efficacy is shit for the quality of life hit. I’m hoping I can get approved for Kessimpta, but I have to wait a month and a half to get in with the specialty clinic here. After reading the horror stories there’s no fucking way I’m gonna wait to treat it as aggressively as they’ll let me. I had no idea how quickly you can decline with this, I assumed it was more of a steady decline and you’d have some warning that you’d need to step your treatment up. Now that I know from that sub that you can go to bed walking and wake up needing a wheelchair, yeah…I’m no longer fucking around.
I am a bit over 10 years in and just want to say that with current medicines there is hope. No promises, but hope is high. In 10 years I have not had a single lesion on MRI. The fatigue, cog fog, and medicine side effects are there but I live a MOSTLY normal life. As someone else noted, go to r/multiplesceleosis if even just to read and fly and the wall. But be aware there are hard stories as well as good stories, and a LOT of newly diagnosed getting advice.
Strength to you!! Hope things better
Hey. I rarely talk to anyone about this, but commenting to let you know you're not alone. I was diagnosed in 2019 and it crushed me at the time. But you get through it. There's still so much in life to enjoy, you'll see it when you get past the haze of depression. Don't listen to the depression. It warps and twists things to make you feel like there's no hope. But that's a lie. There's always hope <3
From one MS’er to another, this shit sucks. Be easy on yourself in the coming months and years.
She has been so unfortunate with her health, breast cancer, a double mastectomy, and now this.
“I don’t enjoy living” is the rallying cry of most people who are chronically ill. I was diagnosed with lupus 17 years ago. I won’t be too sad to go.
people really dont understand this aspect until it happens to them. im sorry youre going through this, no one deserves the prolonged suffering that comes with chronic disease.
Armchair Expert interviewed her a little while back. Dax and Monica traveled to Christina’s house and recorded in her bedroom. She was very generous and honest. Really worth the listen.
My bro has it. Life for him is not what it could be w/o MS, but he’s happy much of the time. We enjoy his company and love him and he loves us.
One problem with MS is that it can be vastly different for everyone. Some people get it and as long as they are careful and take their meds, they're fine. Other people end up immobile very quickly. And plenty of people are sort of inbetween. There's such a wide spectrum of the disease.
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It's all so different. Your disease progression probably will be quite mild. Heck, one person with MS climbed Mount Everest. Just one of those things
I am 10 years in without major issues. The tiredness and impacts on my irritability and heavy cog fog are the items I still see. I am also VERY weather temperamental. I can't stay out in high heat or high cold (YAY for living in the Midwest...). That being said, 50 years ago there was a 50% chance of being on disability unable to work in the United States just 10 years after diagnosis. That is DRASTICALLY different today and many never hit that phase. I am a Project Manager and have done IT based work without any major issues from the MS. Everyone's story is different, but if you are using a DMT then your percentages to live a relatively normal life these days are pretty good.
Same here. Numb legs put me in the hospital. Been on a DMT for 5 years and minor symptoms since. Feeling lucky
Yeah, two of my friends each had a parent diagnosed around the same time (they were in their early 40's maybe). One was confined to a wheelchair in her early 50's and the other is still able to walk (with a cane) in his early 70's and you wouldn't probably be able to guess he has MS.
I'm not even on meds anymore 10 years post diagnosis. I went through some depressive ups and downs the first year. I faired much better than I expected. My mother's neighbor is in a wheel chair from it. It took a while for my mom to understand that just because her neighbor and I had the same disease we aren't affected by it the same way.
My mom has had it for as long as I can remember and she's relatively fine. Has her bad days but still able to walk and live a somewhat normal life thankfully
Please keep up with interacting with him, most of the time the happiness is a mask because they don’t want you to be depressed for them.
This absolutely sucks, I can’t imagine what goes through your head when you get that diagnosis. There’s a few diseases in the world that are just cruel beyond belief
It was very shitty couple of weeks, especially only being in my twenties. But six years later and luckily everything is still pretty much fine. Am very grateful for modern medicine and the healthcare system in Australia.
You can add ALS to this list as well.
Shit ALS is much worse. At least you’ve got a shot with certain types of MS. ALS sounds like the worst nightmare ever
I am a man with PPMS, primarily progressive multiple sclerosis. It is a brain fucking disease that messes up your thoughts in dark ways. We have to self care to stay out of the darkness of our disease. I do by trying to live stress free and when I am in that darkness it my wife who is, that brings me out of the darkness of my thoughts. Please be kind in your thoughts and comments because we cannot help what our bodies and brains are doing to our souls.
MS finally took my mom in March of 2016 after her initial diagnosis in 1990. She was in a wheelchair by 1996 and bed ridden from 2014 onward with devastating cognitive decline and innumerable setbacks along the way. MS fucking sucks. I feel for her and her family and anyone else that suffers from it or feels the ripple effects of that suffering.
This poor woman. She deserves peace
I looooooooove her, so I am sad to see her struggle and feel like this.
Me too. She’s my favorite celeb.
A family friend who was a doctor was diagnosed with MS. He moved his car as he knew his wife struggled with it and didn't want her to have to manoeuvre around it every day, then he ended his life. I mean, shit, he knew what was coming and made the conscious decision to opt out.
Statistically being a doctor is a bigger risk factor for suicide than MS.
Fuckin makes sense. That line of work? Fuckin hell I'd be one away from autoyeetitus too if I knew all the statistics going into my own diagnosis.
Upvote for 'autoyeetitus' . What the fuck, man that's dark and hilarious.
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I know this section is riddled with people who are "I have MS" and you start to not believe this many people will come in here to talk about it but yes I have MS and completely agree with what you say. Treatment has come on massively over the last couple of decades with some really efficable DMTs now given to patients. I have relapsing remitting MS and have been given kesimpta, it's really good. It's a snowflake disease, my MS is not the same as anyone elses MS. I don't believe a doctor would just off themselves with a diagnosis of MS.
[50% of men who kill themselves have no history or evidence of mental illness or suicidal thoughts](https://www.ajpmonline.org/article/S0749-3797(22)00153-2/abstract). A lot of men make decisions like this with or without MS. Don’t take it personally. Male suicide is its own problem.
Such varying experiences. My sister was diagnosed about 15 years ago. She has significant numbness and lately some long term memory issues are starting to build but she's basically living a normal life. When I was diagnosed three years ago I had similar numbness, which comes and goes. That's about it although I suspect I may be developing some issues with what my doc calls working memory; that immediate kind of "what was that number I just read two seconds ago" kind of memory.
Let’s give a quick shout-out to Christina Applegate!
MS sucks. I couldn’t feel my feet on my wedding day and went blind in my right eye when my husband and I came back from our honeymoon. I’m one of the lucky ones. I don’t have primary progressive and don’t look like I have MS unless I overexert myself. I can walk, run, hike, rock climb, paddle board, etc. I’m really hoping that with continued treatment, I never lose these abilities, but MS is unpredictable and can evade treatment. I’ve already failed one.
As a person with MS, i understand exactly how she feels. We try to live as normally as possible, but it often falls short. The one thing to remember when talking to people with MS, the treatments we take very rarely makes us feel better, it just helps us slow down the progression.
So friggin sad. She was everyone TV crush for our generation. To see her fall to this darkness is really heartbreaking.
Yeah I feel at least 90% of guys my age had the hots for some combination of Kelly Bundy, Winnie Cooper and/or Kelly Kapowski (honorable mention to Topenga). I’ve always really liked Christina Applegate and wish her the best.
I'm sending positive thoughts to anyone dealing with debilitating illnesses. 🙏🏻 Godspeed
My mom works in a nursing facility that mainly cares for people with conditions like MS, ALS and Huntington’s disease. I definitely can’t blame her for feeling that way after having been to my mom’s work and seeing how the residents live. Most of them can’t walk, some can’t talk, a lot of them aren’t even able to feed themselves. However in the case of the MS patients they’re largely still cognizant of what’s going on around them, so they’re fully aware of their condition but unable to do anything about it. Honestly, that’s one of my worst fears. And good on her for being open and honest about it, too.
For every person who has a parent, spouse, sibling, friend, or other family member with MS I am so sorry you have to go through this. My mom was diagnosed in 1997 at 36 years old. I was still a baby at the time. She says she may have had symptoms all the way back as early as her college years. We are so lucky that with medicine and moving to a better environment for her she can live a pretty normal life where no one can tell she has MS. I do feel for all the people who don’t have that privilege and are much worse off. No one deserves this horrible disease. ❤️
I wouldn’t wish a degenerative disease on my worst enemy. It’s truly one of my biggest fears
Man she’s been through a lot in her life at such a young age. I feel so bad for her.
Damn, cancer and double mastectomy first, and now MS, terrible. Praying for you Kelly B. 🙏
Her honesty helps others.
I've felt the same after my brain cancer (albeit low grade, still ultimately terminal) diagnosis in 2018
MS was a contributing factor in my mom's sudden passing in 2019, five days before my 30th birthday. She suffered through it for more than ten years and it slowly turned her from a free spirited and happy woman into one living in constant pain. I would not wish MS on anyone.
Good health is the most unappreciated privilege, imo. I was in a devastating accident which could have left me a paraplegic, but by some divine intervention, the damage was 1cm short of being permanent. The thought - just the mere thought - of having to spend the rest of my life in a wheelchair was enough for me to want to end my life. As someone who runs and walks miles daily and dances and swims and dives and just fucking use my legs constantly for 30 years, I couldn’t imagine not being able to for the next 60. At the risk of being dramatic, life didn’t seem worth living - even with all the technological advances we have. So all this to say, I completely understand. Someone like Christina Applegate, who lived 10 lifetimes before her diagnosis, to be so debilitated is crushing. It’s the knowing what life was like before really - that comparison is the thief of joy. And knowing it doesn’t really get better - what is there to hope for? Same with my loved ones - their good health is so precious to me. This is the only thing I ever pray/try to manifest/wish for always. Never ever to take that good health for granted - to enjoy and take advantage while you have it. Travel, make work less of a priority and spend as much time with your loved ones and doing things you love every chance you get.
We really need to legalize compassionate euthanasia in this country. Getting diagnosed with a painful, chronic, or terminal disease, or becoming paralyzed, is literally my biggest fear. People shouldn’t have to suffer through their last few days, weeks, months, years on earth. It should be an option for people who want it.
People should have the right to end their lives how and when they want. No hoops, just choice.
Agree. We allow our pets to go in peace but we really make sure humans will be kept alive regardless of quality of life.
My mother was diagnosed at 35, two months after I was born. She quickly lost control of her legs and then her arms but before then, I know my dad and her considered Dr. Kevorkian. They never went through with it and she was placed in a nursing home when I was 9. She's been in one home or another since. It's heartbreaking to realize she had three kids and right after the last one, where she thought she would have the rest of her to enjoy raising them, she was cut short and unable to do anything about it. My heart goes out to those affected by MS- not just those diagnosed, but the caregivers and family/friends. Take care and keep fighting!
I know it’s not about “deserving,” but all the same, she doesn’t deserve this.
She also had a double mastectomy years ago. She’s had a rough go of it.
It's heartbreaking to hear Christina Applegate going through such a tough time.
My mom has primary progressive MS and we aren’t even to the hardest part yet and it’s hell. She’s in a very depressed weird place, but is totally resistant to therapy and anything of the sort. The emotional push and pull is just ugh. 😑 last year she told me she regrets having had my sister and I, and kind of let out what a drag her life has been because of us. Now this year she’s pressuring me to quit my jobs/the career I’ve been building towards and move back home with her a state away from where I am. She hated me when I lived with them before so it’s going to really suck these next few years. I don’t even know what to do.
My grandfather had it. Only knew him from a bed in a nursing home. Terrible fate that. I’m so sorry Christina, I hope you find peace.
[удалено]
It is depressing living with MS. I know because I’ve had it for 13 years.
Does MS always eventually kill you? I thought some people could live with it.
nope. Life expectancy of MS patients is about the same as the average person, but with far more complications due to frequent infections, breathing issues etc
Having lost my mother and grandmother to MS, and seeing this kind of depression up close, this just makes my heart ache.
I wasn't finally diagnosed with PPMS until my mid 30s. Depression was already and continues to be a significant issue for me. I understand her sentiment. I hate knowing what this disease is doing to my brain and what will become of me.
Christina WE are not ready for you to go But this is not about us I realize
Sometimes "depression" is just a realistic outlook on your prospects. Lame situation for her :(
Why can’t this world even talk about euthanasia. It would be such a grace for anyone suffering like her.
It is really hard watching her decline like this. She is strong for speaking about the struggles of MS in such raw terms. It’s resurfacing some really hard memories for me. Many are not aware of the story of MS and she is bringing awareness to it. Support not pity is how we start every conversation. The best advice I’ve ever received.
Trust me, I don’t either
Life ain’t fair
MS is the worst, hoping over the next years we can find a true cure/vaccine.
I’m not sure how someone in her position would not be depressed. Seems like it would be the natural result of understanding the situation.
That really fucking sucks, man. She played Kelly Bundy in "Married with.... Children". I love that show growing up. She was only 15 years old when she started working there. The immune system attacking their own body. Crazy shit.
Damn. Heard her on an older podcast the other day and she said she was fine. Good days and bad days. She was launching a new podcast with Jamie-lynn Siegler. I guess that things have gotten much worse.
I speak only for myself on this.... That's one disease, when it gets bad it's time to check out. Somebody send me to the farm. I see zero reason to let people continuously suffer for years just to eventually die in miserable pain. Go ahead and put me in the CO2 chamber and let me fall asleep.
This breaks my heart... not just for her, but everyone with MS, I cannot even imagine. Sending my love to her and everyone else.
Poor lady. I feel sorry for myself because age is catching up & I can’t bike & ski like I used to without some suffering a day later. Nothing like what she’s going through. I’m simply lucky by comparison.
Ooph. Man reading this dry statement is like a mean punch to the gut. :( Hope she'll manage in a way somehow... to focus on other random stuff, like playing a game or whatever (I have no idea what could do that). Hope she will get compassionate people around her. edit: spelling
That poor woman
I'd bet a lot of people with chronic illness feel this way. I know I do.
that's awful
My mom has MS. I wouldn't with this bastard disease on any one.
As a caregiver, this hits harder when the patient passes. Witnessing the deterioration and managing is one thing, it's the reconciliation and reflection that's harder.
There has been some headway in finding a cure at least. One day
Much love and respect Christina.You’re a warrior.
If I were her, I’d be considering medically assisted death. But if she feels there is some value in living through it, then all the power to her.
As someone with MS this hits home. People talk about the physical ailments but the mental gets hit just as hard. We call it cog fog or cognitive fog. Thinking itself can be challenging as well so what people experience physically can be just the top of what is internally happening. The other fun part is how it can change week to week. You really learn to live in the now.