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Joined: 7/25/2010
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Location: Ireland
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Hi this is the second topic that I have posted since joining yesterday and it does relate to my first one. It looks as though they do suspect (almost certain, according to the neurologist) Wernicke's encephalopathy (also known as wet brain in lay circles).
As mentioned in my previous post, her condition was caused by a combination of long-term alcohol use and thiamine deficiency For the latter, they put her on a Vitamin (B) drip, which she has been off of now for about five or so days. If they catch Wernicke's encephalopathy early enough, the prognosis is good for a recovery, which can be quite rapid.
But now her docs are telling me that because she hasn't really improved in the past few days (mentally), that (some of) the damage may be irreversible, and even mentioned long-term care if I can not manage her at home. She can be lucid, especially when I wheel her outside the hospital for fresh air and sun, but she can still be quite confused especially at her bed in the ward.
I believe that with a bit of training and patience, along with a part-time caregiver I can manage her physically and hopefully I can help her with her mental state. Long-term care would "kill" her and she said she doesn't want it, that she just wants to get home (eventually) and get better.
Question: Are there any remedies or treatments that may help reverse or lessen the damage? What about therapy? Can other parts of the brain be utilized to perhaps take over some of the functions of the damaged section (ie short-term memory lapses). What about mental exercises that may help? I really love my fiancée and it would devastate the both of us if she had to go into long-term care. It is distressing enough as currently it is.
I am determined to find a way to help her condition. Three years of medical studies (before dropping out), Emergency Medical Technician (EMT I on search and rescue teams) and having been a medical journalist, I will research and find a way. But any help and advice from fellow posters would be greatly appreciated. Thank you for your time. Cheers
Patrick
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Joined: 8/10/2010
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Location: Alabama
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Hi Patrick, I joined this forum, because I read your post, and the reason I read your post is because, I did a google search for Wernicke's-Korsakoff. I do that often because my mother has Wernicke's and has for a little over a year. I take care of her during the day so my dad can work. I have so much to say I dont know were to start.First thing I would like to tell you is that I am SO Very sorry, if people could just live a day in what we live through than nobody would ever touch alchohl again, but thats the thing hardly anyone knows about it and there is very little treatment. People with Wernicke's do not have specialists, no one knows how to treat it and those left to take care of them have no resourses.
In the begining my mother was moved around to three diffrent hospitals, and when she was released we were told that we should put her in a home. We could not afford that, so we had to agree never to leave her alone and that we would be responsible for her, and so we agreed. Immediately after she was released the Psychitrist who was working with her while in the hospital dropped her as a patient and stated that there was nothing he could do, because she had such a severe case of Amnesia it would do no good. So her treatment was left up to her primary care doctor, who has NEVER had a Wernickes patient. It took us about 3 months to get my mother eating, her doctor was threating to insert a feeding tube, but he tried her on a medication thats used on Cancer patience to increase appetite and it has worked to an extent. We finally got a Neurologist to see her and he to had never treated anyone with Wernicke's either, so we wasted our time even going to see him, we have tried everyone, every hospital, every specialist and nothing, AA didn't even know what Wernickes was, which is sad concidering they treat Alcoholics.
The first few months are the hardest, you dont know day today what is going to happen. At its onset my moms was delusional she thought the hospital was her old work and she had not worked in 14 years, half the time she didn't know who we were and she couldn't walk, she was in a wheel chair. We had to repeat everything we said 10,000 times a day and in her mind she didn't even know anything was wrong. Her aggravation level was through the roof, and she would get down right mean, refusing to even drink water throwing food at us and spitting on us. She was convinced we were crazy and trying to control her. We got my mom walking again after about 3 months and we thaught her the phone number and address by putting that info on a chalk board right in front of her T.V, we went over everything everyday and made her write it down so that she could read her own handwriting and realize she was not remembering. Doing this helped alot. A year ago my mom could not remember but in 2 minute intervals then it was all gone, now we are up to her remembering things for about an hour. One thing that we learned is that after my mom left the hospital she was not give and we were not told to give her B1 or Thimin I found that information on line, when we started giving her that at home she really started improving, and any time we go a day or two without giving it to her she gets worse. The medications my mom is taking is Naminda, and Aricept, B1, a daily vitamin, Remron, Lexapro (for depression), Risperdone(for mood swings), Seriqual (for mood swings), Dilaprex and Trazadone.... Its a lot I know but the way I see it is she has improved a lot in the past year and in another year hopefully she will recover. I know what the doctors say, but they also said she probably wouldn't walk again and she is....
A few things you need to watch out for, is depression, they have NO motavation to do anything, they are tired but you have to get them moving. You have to be patient, its extremely frustrating but you must realize that they do not know they are sick, they can't remember how they felt 5 minutes ago or a day ago. Don't waste your breathe trying to explain things that are long and drawn out because they will forget what you said and you will do it all again. They will still crave alcohol even after a year, its not that its a craving but just what they are use to. BUT ITS IMPARATIVE THEY HAVE 0- NONE -NO ALCOHOL, and that will start arguements but stand your ground, you are saving there life.
I hope one day some doctor or research clinic will try and find a cure or at least a medication for it. Teach the public or at least ban alcohol... but I doubt it...
There will be times when you want to give up and walk away, but don't, if you can't devote your life to this put them in a home but dont just walk away, and know that at least I know what you are going through and I will pray for you and her. Sorry for the long post. I hope I have helped.
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Rank: Newbie
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Joined: 7/25/2010
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Location: Ireland
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Butterfly1978, thanks for the reply, I am glad to see that your mother is gradually getting better, let's hope that it continues.
Fortunately, while perhaps Jennie was not diagnosed at the early stage of the W-K Syndrome, it was not at a later stage either, that is, the Vitamin B1/Thiamin IVs helped but she has not progressed as fast as if it was caught at the earlier stage. Apparently one area, among several, of the brain that gets damaged is where short-term memory is most affected, her long-term memory is improving and she is not confabulating as much, and even her short-term memory is improving.
She has been in for 56 days now and for the past five days they have allowed me to take her home (and to the beach etc) for a few hours and this has really helped, especially mentally and psychologically, she is walking almost back to normal. And after a meeting today with some of her medical team, it looks as though her discharge will happen this Thursday (fingers crossed). She has had wonderful professional medical help at St Vincent's Hospital - from her doctors, nurses, healthcare assistants and the hospital social workers. Everyone. And everyone agrees, no more booze, never, and Jennie understands that it was the primary cause for her condition and vows never again a drink, and to start back at AA meetings. I have sat in a couple of AA meetings (open sessions where non-alcoholics are allowed to attend) with her, and I do not really know how beneficial they are, but they must be.
But as they say, there is no such thing as a "recovered" alcoholic, it is "recovering" and as some of her AA friends and her docs have told me (I never had to really deal with the issue before meeting Jen), they can lapse, so I have to be vigilant with a watchful eye, especially when we are out and about.
Again, thanks for your reply.
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Joined: 9/19/2010
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Location: liverpool
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Hi Patrick, I've just read your posts, and my heart goes out to you. I'm in a fairly similar position to you, having a fiancee, Gill, who's just been diagnosed with Wernicke's. She's been in hospital for 12 days, and is only mildly less confused than she was when she went in. You get used to it after a while, but it's a horrible thing to have to accept, isn't it? And not knowing if she's going to get better, mentally, is an absolute killer.
I've found it difficult to get information on timescales for recovery. As yet I don't know if she's developed Wernicke-Korsakoff, which (as you'll know) can be irreversible. I've been clutching at any straw I could find, taking comfort in the fact that she's not as confused as she was, and the things she does know, eg what year it is; but she still isn't understanding what's going on, doesn't know how long she's been in hospital, and can't grasp the fact that she can't go home for a while. It's an awful thing to witness, and I can imagine what you've been through.
Perhaps you can take comfort in the fact that Jennie understands the damage done by her drinking - that's indicative of learning, and remembering, new information, and would give me hope that she'll continue to improve. I don't mind if the recovery process is slow - just as long as it happens!
Best of luck, and if I learn anything potentially helpful, I'll post it here.
Richard
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Rank: Newbie
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Joined: 7/25/2010
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Location: Ireland
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Hi Richard, I haven't checked the forum in a while but I am showing Jennie this thread. She is improving but still becomes confused and disoriented at times and there is also the confabulation. As far as timescales are concerned, it is my understanding that it varies with the individual and also the amount of brain damaged suffered. Hopefully be next summer she will have shown considerable improvement, she is getting there but it is slower than i would like, still there is a lot of hope so hopefully Gill will also show signs of improvement.
Like Gill, while in hospital Jennie also didn't no how long she was there (a total of 58 days) and she has been home for just about two months now.
Thiamine is SO IMPORTANT, she is on 300mg a day (three 100mg tablets). On the climbing forum I frequent, Supertopo.com, there is a nurse practitioner, Lois, who has her own practice in Pennsylvania and teaches nursing at Fairleigh Dickinson University in New Jersey, she says that Thiamine and no booze should see Jennie improve with time and that she has seen it happen in several cases.
Plus one of my cousins (I've got loads) in Washington (state) has Korsakoff's and his sister Louise tells me that he is steadily improving as long as he stays away from the booze (which can be a challenge she adds).
So there is hope for both Jennie and Gill, however a couple of Jen's GPs are as optimistic but I remind them that medicine is not absolute (as one of Jen's hospital doctors told me) and that I believe that recovery (though maybe not full) is possible. Good luck to Gill and yourself.
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