Hi all,

My sister (40/f) had just been diagnosed with WKS. She's been in the hospital since 23 Oct. We are trying to get her home with family, but it has been an extremely hard process, considering she thinks she at a hotel to party.

Our goal is to get her home this weekend with sisters she recognizes.

We would like to get her straight into a facility once we can get her home, but we are all out of our league here and trying to help from thousands of miles away. Has anyone ever traveled by plane with someone actively suffering from WKS?

She hasn't had any alcohol for at least 2 weeks. Has anyone had family go straight to rehab, or did you wait until memory was slightly regained? She's been making healthy choices for food and has gone for short walks around the hospital.

If anyone felt like sharing any advice or insight that can help us set our sister up for success, we are all ears.

This is such a tragic syndrome and I am so thankful to have this group to reference to and feel supported. Thanks all. We got this.

Edit: spelling

I can shower myself but have bad neuropathy and get lost when I go out find it hard to cook at this point hope everyone is well I regret drinking

Hey guys. New here 24 F, Ohio. My father (52 M) recently was diagnosed with Wernickes Korskoff in October of last year, so we are approaching the one year anniversary of when he fell ill. I’m feeling very alone and was wondering if anyone knew of a support group for loved ones ? Thank you so much for any information. I never knew how much this would change my life and I would really like to not feel alone .

A relative (F 74) was recently diagnosed and is being treated for WE. She is not a heavy drinker but had not been able to eat for several weeks. Starvation can cause WE but it's diagnosed far less frequently.

When she was hospitalized three weeks ago, they originally diagnosed a UTI as the reason for her confusion, which had started days before. She deteriorated very quickly and lost the ability to speak or move at all. The hospital finally did an MRI and found WE, but she was basically on the verge of a coma when they started treatment.

A week and a half after starting treatment, she is awake and lucid and understands basic questions. She can control her eyes although she appears to have trouble focusing as she shuts one to look at you. She can't swallow, move her limbs purposely, or speak (she moans and gestures, basically). She wants to communicate but she can't even point to images to portray basic words.

I can't find anything about WE patients losing their motor functions to this extent. We have been trying to get a consult with a neurologist but none is available. I know nobody can diagnose her without seeing her, but my Google searches have all come up empty on what we can hope for.

Does anyone have experience with complete loss of motor function with WE? I know it can take a year for cognitive ability to come back but will she ever be able to swallow or speak or walk again? I also know that early treatment tends to mean better outcomes, but what can we expect when her treatment was delayed by at least 10 days?

Thank you for any ideas.

Does anyone have a solution for dropping eyelid?

Hey, my dad has been diagnosed with Korsakoff Syndrome when I was in my early teens and I don't know anything about it. I have been scared to look for more infos about it for a long time thinking it would be a genetic or at least find an often childrens parents link, but fortunately doesn't seem to be. Now 18 I'm starting to understand a bit more of what he's been through but I have trouble truly believing his whole behaviour has been fully caused by this illness. A heavy drinker when I was a kid I don't know when is the real moment he started developing this syndrome because no one around was able to provide medical need towards him for a long time (living with his own mother who was also a heavy drinker and now has memory problems but not diagnosed with Korsakoff and a girlfriend that took advantage of his situation) so I can't say when it was "him" and the illness. Anyways, he's now unable to tell what year it is, doesn't have any idea of his situation, is unable to stand on it's own and can't recognise me anymore but somehow manages to speak a bit about political crisis (the TV always on with the news). I have also learnt that there was no going back for this illness... He is now partially sober as a nurse comes everyday and handles the amount of allowed alcohol for him to not go kinda violent.

I struggle with guilt about how I felt about him for years because I know he's not responsible of his behaviour anymore but I can't seem to fully forgive the father he has been.

Anyways, I feel like I could share this with a group of people who might, for once, understand what I am saying.

My boyfriend has been in the hospital for two and a half weeks now because of confusion, inability to walk, and making things up. He’s so young and I’m afraid he’s never going to get better. I don’t even know if it’s possible. I only see bad stories about this, especially since it seems like he’s at the Korsakoff stage. I don’t know what to expect and that’s just so heartbreaking and scary to me. Sorry I’m all over the place. I’m just in shock and scared.

How many of you with WKS or LO’s with WKS have had the diagnosis confirmed with a brain scan? The dr suspects my mother has WKS but her brain scan did not show atrophy to the point it confirmed the diagnosis. She is exhibiting all of the symptoms and has been drinking heavily for 15 years.

Hello. My 43 year old relative was diagnosed with Wernicke’s Encephalopathy. He has made good progress physically, but has severe short term memory loss. He does not remember things 2 minutes or less after you told him. I think he has progressed to Korsakoff. Is there a chance of recovery? He’s currently getting out patient care with physical, occupational and speech therapy 3x a week and is staying with family but that’s not a long term solution. Also, if he needs to be in a long term care facility, how would the family go about finding an appropriate one? How do people pay for this? The family cannot afford it. Completely overwhelmed and heartbroken.

I have it wondering if anyone else does and their own experiences?

I recently informed my family that I've reached Korsakoff, a terrifying diagnosis as we all know. My family did not respond. not a single text. i've already explained Korsakoff so that's not the problem. i used to say they wouldn't care if i was dead. Now, while dealing with the emotions of and about wetbrain, my heart is crushed, leveled. Not a single I'm sorry. not a single word. how did others families respond?

Hi there! Hope all is well, and I hope asking this is ok. I’m not sure where else to go about this. I got diagnosed with nutritional wernicke’s, almost 15 years ago, after having weight loss surgery. It took about a year, but I got better. Stopped seeing double, balance got better.

During the pandemic, my head started shaking constantly. Sometimes it’s really bad, other times it’s faint - but I can still feel it, and it’s still noticeable. I’ve taken a couple nasty spills, my eyes are acting up too. I’ve met with neurologists, but no one agrees on what it is. I’ve been on a boatload of meds, and nothing seems to work.

Has anyone who’s ‘recovered’ from it had any weird after affects a long time after the fact? I’ve been trying to meet with a new neurologist, and I can’t get in until January. Just super frustrated, and not sure what else to do. Thanks.

Hello, I was wondering if anyone here knows of someone that was diagnosed with korsakoffe syndrome, but never had wernicke's. If so, how were they diagnosed?

My sister (60 yo) was a heavy, heavy drinker for several years and I believe had become almost anorexic from never wanting to eat. She became really ill 9 months ago, went to ER and hospitalized. It took them a few days to diagnose Wernicke’s Encephalopathy - eventually Korsakof.

She has almost no ability to remember anything for more than a minute or two and is bedridden in a facility - no use of her legs or hands at all. I mean NO use - she hasn’t walked in the entire 9 months. Also a feeding bag - but has actually started to eat a bit of food in the past couple of weeks.

They tried PT on her when she was first admitted but had to quit because she screamed in pain at the top of her lungs the whole time. She’s on a lor of meds - including Gabapentin, muscle relaxers, anti-anxiety, pain relievers, etc.

I understand the memory loss BUT I never seem to read where others are unable to walk or use their hands. Is this common? If not, any ideas? She’s seen neurologists but neither her husband or I have ever gotten a straight answer about that. TIA.

My brother has been admitted to hospital twice for alcohol, he has wet brain but can still function adequately. He's refusing conservatorship but attorney says she needs to get approval from my brother to get the conservatorship. Anyway, I have schizoaffective disorder and cannot take care of him, only because it's expensive. I do not trust the state to take care of him because they are not loving towards him. Does anyone have advise? He told me he can live alone but his apartment is moldy rug and bathroom plus multitude of bugs. I don't know weekday to do... I don't want him to drink because next time he will not come back.

My brother has seizures for a decade or so, he drank minimum. He's been drinking little bit every night to help him sleep and has been getting seizures from it and he was not aware that they could be related. Since he's dumped by his wife for not making enough money and then our mom died he's been binge drinking for few months. He's hospitalized for wk and was discharged then diagnosed again for wk now he's nervous and getting hallucinations. He's been in the hospital for a week They want to put him in a nursing home But he's only 54. I'm so stressed. Are there any stories about recovering at facility and going into group home? Please help.. Or do they live at home?

My father had surgeries and was put under local anesthesia, but has been a heavy drinker for many years. He started cognitively declining soon after and im wondering whether this was an exacerbated quality of the anesthesia or if this is a possible FULL development OF WET BRAIN. any information would help...treatments...medicines...anything...

Thanks in advance for the help

3 years ago I decided to drink myself to death. I knew it would get ugly towards the end but didn’t expect it to progress so quickly. I’m 36 and I’m in stage 2 & having a lot of hallucinations. I’m starting to think a bullet might be a better option

Did anyone get worse with high doses of thiamine? Or know if resources where I can read about it?

I’m located in central Texas and I’m looking for the best type of doctor to help his wife search for to get him in. He drinks way too much and is in denial about it.
He has terrible tremors in his hands, horrible I mean horrible memory issues. Ex spent an hour on the phone with his father in law, hung up, and then asked his wife right after “who was I just talking to?” Some weird aggressions that he also never remembers. Recently was hospitalized with a seizure.

Who does he need to see what type of doctor?

Any advice would be greatly appreciated. Two years ago, my mom (56) was found in bad shape at her home and was rushed to the hospital where she was diagnosed with Wernicke’s Korsakoff due to alcohol and other abuses. Initially, her memory was absolutely shot and she was clearly not in her right head space. After long term care, she was released and has since been in and out of assisted living facilities. Most recently, after being home for a few days, she had a stroke where it seems the final damage is now down. I believe this has progressed to Korsakoff syndrome which is tough to wrap my head around as I never heard of this before. What does long term progression look like? She is being moved to a long term assisted living, but what will the future years look like? Is she going to live a full life like a dementia patient, or is this going to become increasingly worse? Is there ever hope of her being independent again? How did you guys accept this?

I have been binge drinking since my late teens. Then from about 25-30 was really bad drinking about a half a bottle of liquor a night. Have recently cut way back the last year and a half, got in shape, started exercising, Lost weight, eating better exc... and limited it to about once a week. And was feeling good. I went on vacation a few days ago and hungout with some friends that really like the party and I went on about a 5 day binge and it really messed me up. All day everyday drinking. Last 3 days haven't drank a drop, but I still feel out of it with brain fog and my legs feel weak. I can walk around and I'm not really losing my balance or anything but something just feels off. Also haven't sleep really at all the last 3 days so I've been trying to tell myself it's probably sleep deprivation and some withdraw symptoms. Any advice would be much appreciated. Have thought about walking into the ER but I've heard so many docs are ignorant to this disease which makes me nervous they'll throw a bandaid at me and turn me away.

Hi all!

I just kinda wanted to tell my story I guess!

I’m a 26 year old female who got WE at (IIRC) age 22 or 23? It came on rapidly due to excessive drinking to the point of vomiting almost every night. Thankfully, I was rushed to the hospital because my symptoms were so alarming and given intravenous thiamine which ultimately saved me from WE progressing to permanent WKS. I just want to harp on how important it is to spread awareness about this disorder because of how quickly it can progress. If I hadn’t shown all three of the main symptoms of WE or if I didn’t have doctors who were able to pinpoint what was going on and implement a 2 week 24/7 continuous (even while I slept) intravenous thiamine regimine, my life and all of my plans could have been taken away from me before I even turned 25.

Often this disease is seen in older individuals, but I just wanted to speak on this because, though much more rare, this disease can creep up on you and permanently destroy your life at a much younger age than even a doctor would expect (my doctors were borderline perplexed).

If you or anyone you know show a combination of the following symptoms and has a history of malnutrition or severe alcohol abuse, immediate action should be taken as this disease progresses rapidly. The thought of losing my life and everything I’ve worked for before 25 terrifies me and terrified my family, and I felt sharing might perhaps somehow raise awareness.

What to watch out for:

Causes: Excessive alcohol drinking, malnutrition, surgery, bulimia

Symptoms: (Wernicke’s triad)

1. Confusion (strange speech patterns, severe forgetfulness, confabulation, disorientation)
2. Ataxia (inability to coordinate voluntary movements, balance issues, with me I was unable to hold myself up on my legs or walk)
3. Nystagmus (rapid uncontrollable eye movements)

Idk if this will help anyone but I hope it maybe gives some hope and awareness.

Be safe out there, friends!

I'm so happy to have learned the name "Wernicke's Encephalopathy" recently from my therapist. My husband and I moved in with his parents (with our two children) about five years ago, because the house was in a horrifying state of disarray. Mother-in-law "Grandma" was trying to care for Father-in-law "Grandpa" with no knowledge of medical care. The two of them drank very heavily for decades, Grandma drank on top of a high dose of Xanax.

When we first moved in, nothing made any sense. Grandma acted like we were crazy whenever we tried to talk to her about the rats in the house and in the attic space. She seemed to have blinders on when it came to the dishes piled up on the counters and in the cabinets, the fact that she and Grandpa had been wearing the same clothes for god knows how long, the rotten and rancid food and trash in the refrigerator, etc.

Grandma wouldn't let us help with Grandpa previously, so we backed off and really only heard from her if Grandpa had a fall and she couldn't get him up off of the floor. Looking back now, I know that the both of them were living in an isolated world of codependence and extreme alcoholism.

When we first arrived, Grandma used to talk to me about three inches away from my face. She seemed terrified of everything and hovered over me when I cooked or washed dishes or cleaned anything. She'd tell me "well I do it this way, because MY MOM used to do it that way..." She was never helpful and always telling me I was doing things wrong when I clearly knew what I was doing. She was afraid of the neighbors seeing us take any alcohol bottles or to the trashcans, that "someone might look inside and think we're drunks!"

I can see now that Grandpa had been in a state of hallucination and confabulation for much longer than anyone had even realized. He told wild stories that sometimes led nowhere, sent us on wild goose chases looking for things that did not exist, woke up at all hours of the night and sang " LA DA DEE DA DA DEE DAA DA..." type things and woke everyone up. He often forgot Grandma's name and called her "Mom." He seemed like he wasn't sure if he was calling for his wife or his own mother sometimes. He once asked me, "where's thing?!" when asking for Grandma. He yelled at her a lot and threw things and shoved items off of tables and shelves, often breaking everything and then moving on as though he had no recollection of what had just happened. Grandma normalized and reasoned through all of this.

Meanwhile, whenever I'd talk to Grandma about Grandpa's state, she's insist that he was as sharp as ever, had no memory issues, etc. I initially thought that she was just in disbelief, but I can see now that she thought everything that was going on was normal, she didn't remember what had just happened or the day before. She had forty years of making up excuses for Grandpa when he was drunk, so that pattern continued even after they had stopped drinking. It took me a really long time to realize that Grandma was just as lost as Grandpa.

I've spent the last five years feeling very confused by the way Grandma tells the same stories, but differently each time. She actually told me one day that I was her hero because I run the household and homeschool my kids, the very next day telling me I am lazy and to "get my shit and get out!" I later learned that this was the phrase that Grandpa used to scream at her when he was drunk and delusional and, later, when he was confused and couldn't remember what he was trying to say. At one point, Grandma told me that she'd never met her mother-in-law because Grandpa "never brought women over to meet her because that's the way she liked it!" then "Oh, no, she died before we were ever together." It took me a long time to train myself to remember that Grandma often doesn't know what the hell she's talking about, will not remember what we've talked about and not to take it personally.

The reality of the state my in-laws were in took a huge toll on my husband's mental health. His parents really hit the bottle once he left for college. The house used to be immaculately clean and both of them were smart people. He started having anxiety attacks that left him in a panicked state. He would leave in the middle of the night and drive around, terrified that someone was after him. He told me he'd hear me talking to him as he drove from parking lot to parking lot, trying to hide in the back seat, thinking that police or criminals were after him. I worried constantly, made many missing persons reports with the police and tried to track him. Grandma only ever said, "Well, we didn't RAISE him that way!" She didn't seem to understand my concern as a wife and thought I was looking to blame her for his disappearance. It turns out that he was breaking from all of the stress of seeing her lose her mind.

It's been just about five years since Grandpa passed away. When we first arrived at the house, he couldn't out of bed on his own, was wearing a tank top that Grandma never washed and had lost so much weight. Grandma hadn't been helping him to do his physical therapy exercises, hadn't been bathing him, and was only feeding him ensure and peanut butter and jelly sandwiches. He was in a terrible state. I started cooking many times a day and my husband would help to feed him. Grandma only ever seemed to want to eat things made mainly of sugar. There were a lot of arguments. Most of them were about things that didn't seem to make sense. We discovered that Grandma had been hoarding strange items, like the shiny cardboard rounds that come under a cake from the bakery. There were hundreds in stacks all around the house! There were hot cocoa cans everywhere with little bits of birdseed in them. We found at least a hundred boxes of mail- most of which had never been opened. Some of the boxes dated back to 1992. I have often wondered if something happened in 1992 that traumatized her. So much of her behavior just didn't make any logical sense and my brain kept trying to solve the puzzle!

Grandpa ended up having his heart stop suddenly one afternoon while my husband was feeding him applesauce. He just slumped over and was unresponsive. I heard them trying to get him to respond from the next room. I ran in and told Grandma to call 911. I asked if either of them knew CPR and was shocked when they both said no. I had my husband help me move Grandpa down to the floor while Grandma shouted at me to "just do it on the bed!" I had to calmly tell her that he had to be flat on the floor and to please tell the dispatcher our address. I did chest compressions for fifteen minutes until paramedics arrived. I had to continue for another fifteen minutes while she dug around in piles of trash, looking for his medical papers, because she couldn't remember if he had a DNR or not.

She couldn't remember if her own husband wanted to be resuscitated or left to die in a state of emergency.

By the time she finally found the folder, Grandpa hadn't taken a breath in more than thirty minutes. I asked my husband to take her to the front room so the paramedics could administer Narcan (because he was on prescription opioids) and defibrillate him. She started telling us that if Grandpa was dead that she wanted them to "leave him here because I don't want an autopsy done!" That seemed very strange to me. We had to physically restrain her so the medics could take Grandpa on the stretcher to the ambulance and to the hospital.

We spent the next three days at the ICU, fighting with her to let the doctors take him off of life support, as was stated in his medical records. She was frantic and nonsensical for three straight days, wanting attention from the staff and amassing free items to bring home. At one point, she found nail clippers in her purse and clipped Grandpa's finger and toe nails. Looking back now, I think she was trying to hide the fact that she hadn't been taking care of him. She had spent months at a time, between his occasional doctor visits, lying beside him, passed out drunk and on Xanax. I still feel angry at her about this from time to time. I understand now that she probably had no sense of how much time was passing between naps, how little the two of them were eating or meeting their basic needs. I also know now that she was taking Grandpa's prescription medications, including more Xanax, on top of her own while drinking.

It tore my husband apart seeing his father being kept alive by machines, knowing that he didn't want that. It made him crazy that his mother was acting absolutely bonkers while his father appeared to be suffering greatly. It was like he was having a partial seizure for seventy-two straight hours. At one point, my husband was so sleep-deprived and screwed up that he accused me of cheating on him with a stranger at the hospital. I couldn't believe my eyes and ears when he took me into a hallway bathroom and started ranting about it. I was so confused and frightened.

At the end of the three days, we had talked to the doctors and staff about talking to Grandma about letting Grandpa go. He had no signs of any brain activity, his heart and lungs weren't functioning on their own and there had been no improvement in anything in the days he had been there. Grandma started telling him not to leave, that she wanted to go with him, that the cat world be upset ifvhe didn't come home. I understand that grief is a crazy thing but, once again, she was making so little sense. She eventually agreed to having him removed from life support systems, but insisted that she be there while they do it. I warned my husband that she should not be there for that, that it wouldn't just be peaceful and he'd just go to sleep or whatever. Grandma wouldn't leave with us, so we went home to shower and make arrangements. Grandma stayed and was absolutely horrified to learn what removal from life support entails and was completely traumatized. She has hardly left her room since that day. She cancels doctor appointments at the last possible minute. She is afraid to take trash to the trash cans on the side of the house. She insists that she clean the cat litter box each day, but she leaves a plastic bag of poop hanging from the doorknob for us to take out to the bins. My husband made the arrangements for his father's cremation with the funeral home, although Grandpa had wanted to be buried in his family's plot. We couldn't afford the cost of a coffin and services. Grandma wanted us to put Grandpa's urn on the floor of her bedroom and my husband yelled at her that that was incredibly disrespectful, given the state of the room. We placed the item on the piano in the front room and it has sat there since.

It has slowly gotten easier to interact with Grandma. Recently, after cancelling her doctor appointment for nearly six months, I motivated her to shower (which she will only do of she has a doctor appointment) to let me wash her clothes, and drive her to the building. She will only go to appointments with her doctor if they are because they have to see her in person to renew her medications. After I brought her back home, she let me wash her blanket and sheet and put new ones on the bed. I told her that, in a few days when she was recovered from her appointment, that I'd help her to throw away some of the old prescription bags and garbage that are cluttering her room. This was the first time in five years that she didn't try to say she'd do it herself, make an excuse or change the subject. That felt like a win!

Today, Grandma talks to us from a reasonable distance. She eats food 3-5 times a day. She eats the food that I cook. She's learned how to chew with her dentures after spending many years with rotten, broken teeth and avoiding the dentist. She has told me that she's been saving a little bit of money and wants me to take her to buy some clothes. (She had previously told my son that she didn't wear the same shirt and pants everyday, she had multiple of the same shirt and pants. Even he didn't fall for it.) I'm going to try to get her to come along with us the next time we go out to the diner down the street. She's been weaned off of the Xanax and no longer shouts incredulous things at us or has a panic attack when we're throwing away boxes from the garage that rats have soiled and chewed up.

My husband recently got hired on with the state and is no longer having panic attacks that cause him to run away and be missing for days. He is much more calm and focused and happy.

I have been in therapy for about two years now and have been slowly unraveling all of the trauma and stress and have been learning to reprogram myself. I no longer spend hours ruminating over something Grandma said or did that made no sense. This last week, I've been reading about Wernicke's Encephalopathy and alcoholic dementia and having many "Aha!" moments. I am sleeping so much better, my nightmares are much less frequent and the house is in good order. I feel very strong and capable after years of feeling helpless and crazy. Grandma is fairly pleasant most days, occasionally asking us 4-5 times if we can pick up her prescriptions once a month, forgetting that she's already asked.

I am so grateful to have found this community. Reading the accounts of everyone else's experiences with this condition have helped me to feel like other people get it. It's unreal trying to explain what it's like to someone who's never dealt with someone in this state.

I just want to share this because there are a lot of really scary stories out there. In February of 2022 my friend's sister called and said he was acting very strange. We knew he had been drinking a lot the past couple years and generally not taking care of himself, but no one knew how bad it was. Well when I got there he could not sit up, he couldn't pick up a cup, couldn't stand or walk, and was saying really crazy things that would have been funny if it wasn't so scary. He told me he had just been to the race car planet where he had gotten into a crash and they had to reattach his arms seven times, and wondered which planet I had just came from. He was very animated about it.

So the hospital could not diagnose him for 3 days (fucking northern Michigan) and we don't actually know how long he had been that way, but Id guess 5 total days of these very acute effects and probably 6 months sliding downhill, plus probably years or teetering at the top of the slide. He was crazy and bed ridden for the next three months. Little things improved, he could pick things up with his hands after a few weeks, and I would get calls like- "hey Luke is here and we know where to meet you?" me: "Luke who?" him: "We need to meet NOW because I have the death star in my pocket and they are going to find me!" He was watching Star Wars. There was a lot of confusion, no short term memory, didn't know where he was, couldn't remember people he knew, and his entire body was numb. It was very scary.

All of the sudden, three months after being in the hospital, he snapped out of it. They had cleared an apparently untreated/under-treated bowl obstruction and... he was back- well, at least he started to be able to distinguish reality from fantasy, started to sit up in bed, and eventually they got him to stand up, and walk with a walker.

Now its been 17 months and he rode his bike to meet me at the beach the other day. He has been 100% sober, eating well, working on exercising. He is still pretty forgetful but he can live independently. He still has numbness in his left lower arm and hand and both legs below the knee but its been getting better very slowly. Nerves are actually healing, though we don't know if he will get full feeling back. He still confabulates but he knows to double check his thoughts to make sure they are accurate- which has got to be so strange and emotionally overwhelming- but lots of little phone calls and reminders help. Overall, relatively, he is recovering in a way the doctors never thought could happen. They told us to find him a full care nursing home to spend his life in. He was 38 years old at the time. In our case, the doctors really didn't know anything about Wernickes and didn't do a great job.

Anyways, just wanted to share a story where someone comes back from the brink because I know there are few out there. Everyone eat their B1!

Has anyone tried Sulbutiamine for wet brain? I'm not recommending it. I just read that it can cross the BBB so I'm wondering if anyone has had success with it.

My dad has been a daily drinker for about a decade or so. Ever since covid though, his memory has been getting drastically worse by the day. It's gotten to the point where he can't remember a single thing he ate for breakfast on any given day. Beyond that, his short term memory is fine but is slowly getting worse.

His long term memory is less affected, but it's still getting worse, slowly but surely. He has trouble gauging the time between events, time which he used to know like the back of his hand.

Has anybody successfully gotten their dads sober past this point? Would it do any good at all?

Hello, I’ve been scouring sources but couldn’t find an answer. My question is how long after wernicke’s encephalopathy or withdrawal from alcohol after a period of malnutrition do symptoms of korsakoff syndrome set in? All sources just say something like “after symptoms of encephalopathy diminish or disappear”. Is it possible to develop korsakoff syndrome 6 to 8 weeks later? Personal stories or actual sources or data welcome.

hey everyone. So- this is where I am at, I live in MA and I have absolutely no idea where to even start. I’ve been doing research about how to obtain power of attorney but they all say they will need her (my mothers) signature which I don’t believe she will ever give given she doesn’t think anything is wrong with her. It’s like Groundhog Day. I used to love that movie and now it makes me sick to my stomach. My moms apparent onset happened right after we got her into rehab after her mother (my gma 88y/o I was caring for) died. So she is on thiamine 100mg 4x daily. At first she was at least kind because I learned their mood can really depend on your mood so even though I was grieving, I pushed through to make sure she was in a decent mood for the day and it worked. All of a sudden about a week ago she started relentlessly asking for her keys and money which, we all know what that means. It hasn’t stopped and it’s getting more and more dangerously out of control. I’m trying everything to keep her safe but I’m in such a bad place right now. I wasn’t aware that aggression was even a symptom… is it? If anyone knows let me know please as this is one of the worst parts of all this. Also, if anyone has any guidance as to how to obtain a power of attorney that would be so helpful, how to go about getting workers set in place so I don’t have to be her chauffeur, and if anyone has any insight as to how to keep my mental health safe and allow myself to have a life as well I would really appreciate anything. That was a very very short version as to what’s going on which I’m sure you all know as we are all dealing with this and all know it comes with so much responsibility on a person… I am so so so sad I can physically feel it on my heart. Any advice helps. This disease is a monster. And to anyone else feeling this helpless/ hopeless/ lost, know you are NOT alone.

So in March of 2021, I got word from a total stranger that my sister (57 yo) had been hospitalized. It turns out that she had been having hallucinations for approximately three weeks, and had been effectively unable to walk for even longer. She had Wernecke's encephalopathy, which is swelling of the brain due to a thiamine deficiency. She had been anorexic/bulimic since she was a teenager, and had been drinking constantly for the past five or six years. She took about two weeks in the hospital to detox, then was transferred to a skilled nursing facility for physical rehab (peripheral nerve damage made walking difficult). It was a real nightmare trying to get information from that facility, but to make a long story short, my mom and I ended up moving her to a memory care facility in FL, just a couple of miles away from where my mom lives in a retirement community. This is where the "living with" the syndrome begins, and where the difficulties of that life really become apparent. My sister has most of her cognitive abilities. She can play cards, board games, read, use a computer, and do many things that she did before. However, she has to have 24/7 care because the Korsakoff syndrome left her with relatively little short-term memory. She gets lost, doesn't remember what happened two hours ago, and because her eating disorder is still active, she wouldn't feed herself properly. Without supervision she would begin to drink again as well. The problem is that she knows that she's in a memory care facility, and is aware of the fact that she's the youngest one there (by far), and that she doesn't have the same kind of dementia that the other residents have. She likes it there, but is frustrated by the fact that she can't get out and do things that she wants to do. She really doesn't fit in a traditional memory care facility, but we don't know what else to do! She has no insurance, so my mom is paying out of pocket until we can get her on Social Security Disability (don't even get me started about that process...), and from there get Medicare or Medicaid. It's all really confusing. My mom takes her for outings about 1-2 times a week, but my dad is also in memory care, so she has a lot to juggle, and needs to take care of herself as well. I live in a different state, and although I can get down a few times a year, it really isn't enough. I can't even resent her any more, because I'm a recovering alcoholic, and understand all too well why she isolated herself on the other side of the country, but sometimes it still comes up as I try to get her son to become a productive, independent member of society (I became his guardian when she abandoned her kids, and have, for the past 6 years had him living with me. He's now 20, and just finished high school, and suffers from severe ADHD and anxiety. His siblings are 2 and 4 years older than him, and both went through college on full scholarships, which I know dings his self esteem.) So, I know that this is a long post, but I haven't found anyone that can really relate, and information on how to help someone live with this syndrome is pretty much nonexistent as far as I can tell. Anyway, I don't really know what can be done, but I thought I'd post my story to see if anyone else has gone through similar issues with a family member or friend, and maybe just wants to share their story as well.