I wrote a little book I chose to call Green Goblin. As far as I know, it's the only depiction from the patient's point of view, of the acute phase of Wernicke's Encephalopathy. (This isn't a commercial, but if you're interested in buying the book, there's a link on this blog.)
This is the rest of the story in a nutshell.
If you read much at all about Korsakoff's, you'll find that memory problems are listed as the biggest problem of the disease. That's true. It's not a matter of forgetting things; it's more a matter of having things vanish from the brain. Vanish. As if they were never there in the first place. When that happened to me, I wouldn't even have the memory of having the memory. Reminders were useless.
After seeing a neuropsychologist, we decided it would be helpful for me to carry a small digital recorder to record things I might forget. I did. Over time, I needed it less and less. I still have it with me and I still make little notes to myself, but it's very rare that I won't remember making the note.
The other problem I have from the disease is neuropathy. It's not neuropathy that involves numbness...it's a painful neuropathy. Sometimes the pain is in my legs, and sometimes it's in the shoulder, and sometimes it's in the hands. It used to be difficult for me to walk.
No... I'm not hawking a miracle cure. There isn't one. I will tell you that Thiamin (Vitamin B1) and complete sobriety are the 2 controllable keys to my recovery. (The uncontrollable is faith, by the way, and love from loved ones.)
I saw a few neurologists after I was released from the hospital for Wernickes. Each was a little helpful, but interestingly, all said I didn't need to take vitamin b1 supplements. They all said it wouldn't improve my condition. The good people at Dukeries Health Care in the United Kingdom (Google it. They know their stuff) treat the disease with vitamin supplements. I met someone online (and I really appreciate it Karen) who told me to take thiamin and keep taking thiamin.
Know what? The pain stopped...most of the time. When the pain comes back, I take some thiamin and I feel better in about 20 minutes.
I think I still forget things from time to time, but nothing like I did early on. Some will say that the damaged brain doesn't heal, some will read this and think that maybe I didn't have the disease. I think both assumptions are incorrect. I don't know much about the healing powers of the brain, but I know this--I don't forget like I used to forget. Some, maybe. More than others, probably...but I don't have those magic blanks anymore. As for whether I had the disease: I have the medical records. I had it; no question.
To those with a loved one who suffers from the disease, I offer this: there is hope. Help the patient by reminding them constantly that there is hope.
I won't kid you... I think healing is unlikely. Sobriety and thiamin are keys, but there's one more. The last is simply this: the patient has to be a stubborn S.O.B who believes in himself/herself and is shockingly unwilling to give up.
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