My partner was showing symptoms of brain damage for several years before he finally had a major illness(es) related to the 35 year alcohol addiction.

I’m retired early from disability. My spine is toast. He would watch me do the most difficult things and never offer to help. One example was when he was nearing his retirement we started the remodel of our home we inherited from his aunt. I had to get the house emptied and it was years of his mother’s and aunts stuff. It took me 9 days. I’d could barely walk. If it hadn’t been for Facebook (ack) marketplace and a kind couple that had a resale place getting most of it out of here for free. My 83 year old mom, who is in good health but…) had to help me drag our mattresses out to the garage where we put the furniture we were keeping.

He took 3 days off to binge when I assumed he was working. My neighbor tipped me off he was home.

How we got through that move is beyond me. But he just couldn’t help me. And since he’s home from the hospital he has had some symptoms go away but clearly needs therapy. I think he’s in denial. I want him to slow down so we can figure out what issues he’s having so we can work on them before he goes for his next appointment with his internist but he waves it off. He’s like a walking house destroyer. Wherever he has some trash, spilled food, dirty dishes left in the bedroom or dirty clothes just stay wherever he happens to be standing when it needs discarding, cleaned or put away.

I can’t do this for much longer. I’m in pain. His apathy has caused me to do a lot of damage to my body. I’m physically unable to. At this rate I’ll be in a wheelchair before years end. His sister is visiting for the first time since he got sick. I think she’ll be a bit shocked at his appearance. Don’t know if he can still fake happiness and gratefulness.

Does it ever get better?

This doesn’t seem to be a super active subreddit but maybe this will reach someone who’s been there.

My partner (64M) has been a daily drinker probably since we met 35 years ago. There were occasional dry periods when we were younger to lose weight etc but effectively daily. He’s been a heavy drinker with 1-2 liters of wine for probably 12 years and has drank through the day for the last 4 years and it increased to 3-5 liters a day probably since the pandemic until he was hospitalized a month ago.

What I thought was drunkenness and laziness was apathy that really began over the past year but when he retired in March he just sat and stared at videos and drank all day with zero activity except trips to the grocery store and such. I just didn’t know that it was apathy. And now there’s a zillion little signs for that I reflect on and they have been happening years.

4 weeks ago he was vomiting blood and was admitted and spent 6 days in the SMU unit. He was given a lot of B1 as well as other nutrients. He was started on heavy doses of Librium and Ativan for the alcohol withdrawal. He was diagnosed with chronic alcohol induced gastritis, had to have 4 units of blood but no bleeds were found. He was on antibiotics. It was noted that the CT showed some indication that his liver was damaged but the severity was unknown without further testing. He was released and was on Librium for 2 weeks on a taper. He was a zombie during that period and we followed up with his doctors associate the day after he was released and he couldn’t participate in the conversation he was so sedated. He checked his meds and agreed it was fine they gave me a prescription for a antidepressant to start after the Librium wore off and made another follow up in 4 weeks and to call if he needed anything for anxiety or sleep. He’s well beyond the effects of the meds so what he’s experiencing can’t be blamed for that. Given the background.

He can’t operate the microwave. He’s broken 2 remote controls this week saying it’s broken and he needed a new one. He wanders at night looking for something but unable to remember what it was. He’s emotionless. He has periods of confusion. Wakes at 2am thinking it’s morning and time to get up. He thinks he has appointments he doesn’t. He changes clothes multiple times a day. Hasn’t answered a phone call or text. Hasn’t paid our utilities but didn’t remember he hadn’t this month. (I took care of it) doing bizarre things.

I’ve taken the keys which exasperates but that chance can’t be taken. I’ve removed the firearms. I’m calling his doctor Monday and tell them his symptoms and the urgency to get a diagnosis because he won’t be able to get his Medicare until March and without legal intervention I can’t get him insurance for those 2 months. Not to mention stepping in and protecting his assets like our house and his 401k. His sister is going to be with me. She hasn’t seen him yet. They only saw each other a couple of times a year for a meal and had no idea he was an alcoholic until last fall when I told her as I knew he was starting to go downhill so I have her support.

I am clueless and frightened about what’s about to happen just… lost.

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!