Real stories

Living with alcohol-related dementia - Mick's story

I was only 25(female) years old when I was diagnosed with Wernicke's Korsakoff syndrome, a disease usually only males in there 60s-80s get who have been drinking for the majority of their life, and am now 28 years old. I was drinking around a pint and a half, to three pints a day, of just straight vodka. I also was diagnosed with anorexia Nervosa back when I was in highschool and after I had had both of my children, ages 6(11/2015) and 3(8/2019), and so the drinking just took away even more thiamine. I thought I was completely fine though and that my family was just overreacting about me. I had woken up one morning and wasn't able to even walk a simple three steps in front of me without physically falling over, like I was drunk but I was completely sober then, the next couple of days I still wasn't able to completely walk without support and then I woke up with my left eye turned completely inward but I was still somehow seeing straight. My original physician has just originally actually just brushed me off as if I was pretending or it wasn't that big of a deal, it was my optometrist that was the one that said I had either go to the hospital RIGHT THEN or I die, and in my mind I was still completely fine, I didn't need to go, even though I had thought that the president was still Barrack Obama, NOT Joe Biden (2020). When I finally was forced by my family to admit myself in the hospital, I don't remember ANYTHING about that entire first four days, my family says that I just mainly slept the whole time but I don't remember it but I'm glad now that I did. I stayed a little over a week in the hospital. If I drink any amount now, my eye will start to turn inwards as well although I'll still be able to walk normally but I'll also stay more confused. Having WKS, for me, is like having short term memory loss, like the little blue fish, Dory off of finding Nemo, that's what my life is now like, unfortunately and I have no one to blame but myself. My optometrist said that if I had not gotten to the hospital that day that the very next day or the one after then, they'd have been calling for a coroner to come instead of an ambulance. My physician didn't think It was that big of a deal though until my optometrist basically forced him to have another look at me, a more thorough one and when he did he admitted me instantly and told me if I EVER drink again probably will not make it back as well as I have this time. He was and still is in utter shock and disbelief about me and my recovery, he told my family he didn't know for sure how I would be whenever I woke up, IF I would have ever even woken up again, that is, he also said that I was THE youngest person he had EVER known or heard of to have WKS at my age before and he's been a doctor for quite some time. He and my optometrist are still in shock about how well I've recovered from it. They had all thought I'd have had to have been admitted into an adult care facility for the rest of my life because of all the damage I had done to myself from alcohol. I was only maybe drinking about a pint or two pints a day of vodka. I'm also only 5'7ft and 135lbs. My eye finally turned back out, my memory still isn't where it should be or was before but it's nowhere near like it was during this time. If it wasn't for my optometrist, I'd truthfully be dead and gone right now, because my physician thought I was just faking it all for attention and was just going to send me home again and not do anything, if he had, I wouldn't be writing this message...

My husband of 33 years has been a heavy drinker his entire adult life. Sneaking to drink and leaving a trail of bottles in and out of the house. He's been admitted into the hospital for15 days, where many tests were taken. A doctor mentions that he may have MKS but never really diagnosed him. He was then put into a skilled nursing facility for 1 month. They said he had improved so he needed to leave. Long term facility isn't covered under my insurance. I brought him home and it's been tough for both of us. His memory is bad, and physically he's in bad shape he's weak, and wears a catheter. I struggle with the same questions being asked continuously. He hasn't been diagosed with alcohol dimentia but I see all the symptons in his behavior. Thank you Mick for sharing your situation, it's helped me see that others are dealing with this same issues. Stay positive

Hello, thank you for sharing. My husband is 57. Has been an alcoholic all of his adult life. When we met 22 years ago I wasn't educated enough on the subject to realize that it would progress as time went on. About 7 years ago he started going through horrible mood swings and would talk to himself about really off the wall things. 6 years ago he had a mental break down. Ever since then he has been delusional and some hallucinating. I had to leave him because he wouldn't get help , but found help for him and have been in the picture for 2 years. A. Year ago he was diagnosed with Alcohol Dementia. He absolutely refuses to stop drinking, I am sure some of the irrational thinking is due to the dementia but he sees quitting drinking as a power struggle with me and not to better himself and possibly save our marriage, yet claims he loves me so much. It has been a very trying past 7 years Thank you for letting me share.

Hi Mick, bless your heart. My sister is a severe alcoholic. Just recently I've noticed a change in her personality. She won't or can't speak much and it's freaking me out. My mom died of dementia at 65 so I've seen how her personality changed her and I'm so terribly scared that my sister is getting it too. Luckly she is going to detox then rehab next week. I need a miracle and most of all I need God and prayers.

Your story is told very well and I wish you all the luck in the world

Hi, you are not alone and are obviously very articulate. My husband has alzeimers and when he drinks red wine becomes very agressive. Good luck to you,and your wife.

Hi Nick very brave of you to share your story . My husband had been. A heavy drinker for over 30 years. He has been struggling with memory and cognitive skills for 18 months or so. He was referred to memory clinic in March this year and has brain mri. He has been diagnosed with cerebral atrophy but is in complete denial and will not stop or reduce his alcohol intake. It is so upsetting to watch him progressively get worse and being powerless to help him

Im 49 yrs old, Ive been drinking and using various other drugs fairly heavy for 34 yrs. Ive gone thru 17 rehabs and a couple of stints in the nut ward. Ive got almost a month clean now, but have trouble talking steady, I trip over my words or forget totally what I was talking about. Simple words I cant spell anymore. I have zero recall on things I read, often having to re-read something over and over. Ive also had many concussions due to wrecks and domestic abuse. Ive had seizures that cannot be explained that come and go. I have strange twitches and sensations on a regular basis. Im in the process of applying for disability, for the 3rd time. I feel pretty hopeless most days, and just try to push thru as best I can. Its hard to find a good dr. that will work with you for a correct diagnosis. Any advice would be appreciated.

My hubby og 12yrs had to stop drinking due to Bleeding Ulcers, 1mnth now, however at night he's beeing seeing things hallucinating, should I take him to get checked?

Hello Mick,
I am very glad read your story. My Father is an alcoholic and has been for a very long time. He recently had a 15 day stay in the hospital because of his malnutrition due to alcohol. We now believe he has ARBD due to the many years of alcohol and the many falls related to intoxication.
I am trying as his daughter to learn about this condition as well as learn to cope. I also am learning to help support him through his recovery. Reading you r story has shown me hope, so thank you very much for sharing.
Diana

Mick, what you are going through is hard, and I applaud you for being persistent and brave. Thanks for your sunny thoughts!

Hi Mick,
just got referred to memory clinic ,they are trying to decide if Korsakovs or not( long time alcholic) terrible when can't remember ?Take matie keep on keeping on

Read your story Mick and really admire your struggle with alcoholism and with your son's condition. Keep believing in yourself Mick.

Hi Mick, I have to say your story is remarkable, I'm currently doing a project in University to help and break the stigma that surrounds dementia and I would love to use your story, I have to make you aware that it will be used anonymously and in line with research law and research ethics conduct. Please let me know whether you would be happy with it by replaying or email me at [email protected].
Thank you.

The best of luck to you. I myself was recently diagnosed with "early onset Alzheimer's". My G.P. Said I was suffering Depression and put me on Anti depressants but my son wasn't happy and took me to a Private Consultant who arranged a Brain Scan which gave me the devastating news - it was "early onset Alzheimers" it is not easy coming to terms with that as I am so independent normally. But I'm doing my best to continue with life as before my diagnosis