wernicke-korsakoff_syndrome : Message: Re: [wernicke_korsakoff

I am truly too exhausted to debate this with you. I work in a field that daily
deals with alcoholics, their families and the consequences of their actions.

I have never said support groups are not absolutely necessary for recovery. I
feel the only way an alcoholic can recover is through a daily support group.
But recovery is possible.

My dad is dying. He has a very short time left. His brain is destroyed, his
liver is destroyed, his kidneys are shutting down.

He was diagnosed with WKS three years ago and continued to drink heavily (1/2
gallon of vodka, wine and beer every, every day.) That absolutely affected his
progression of WKS and his brain. I don't need research or studies to tell me
that. I live it every day.

I believe he did lose the ability to make a choice to drink or not. But at some
point during the 30 years that he has been a heavy drinker, I believe he could
have made the choice to stop, although certainly genetics played a role. At some
point he could have said the car accidents or the financial disaster it was
causing or the affect it had on his relationship with my mom, was too much and
chose to stop drinking. He didn't. He thought he could beat it.

Daily I deal with people who come from alcoholic parents, are huge alcoholics
and they choose to stop drinking, although the desire is constantly there,
because of what their actions are doing to them or their family.

That's what I'm saying. At some point, everyone makes a choice about the way
their life is heading. They choose to continue on thinking they can overcome
any problem or they choose to take advantage of the help available.

If they continue on drinking, or starving themselves or eating to excess or any
other destructive behavior, I believe your brain is affected and you lose the
ability to stop.

My dad chose to continue and has now lost the ability to stop drinking. If his
example, or all that we, his family, have been through because of his drinking
can help someone to stop while they can, before their brain is too damaged to
make that choice, I hope it works.

As far as the research. If you have the time and the ability to lobby people
and make the medical field more aware, go for it. I have four step-children and
a husband. I have a mother that is barely keeping herself together. I have a
job that I can't afford to quit. I don't have time to lobby at this point in my
life. I will say I have dealt with 8 medical facilities in the last three years
and at least a dozen doctors. To each I bring any articles, research,
discussions, etc, I can find about WKS and try to get answers from them.
Although my dad was diagnosed with WKS, only two doctors agree with that
diagnosis. Although he is obviously in grade three of PSE, the doctors dismiss
this as any worry. He's dying of this disease in front of their eyes, they are
giving him medicine only used for this disease, but they will not talk to us
about it. They are sending home a man who doesn't know where he is, who he's
with or what day it is as soon as he can walk. That's my life. That's why I
can't debate for hours on something that even physicians who study alcoholism
and the effects for years can't agree on.

I just know what I need to get through my days. I need input from people
suffering from these diseases. I need to know how their loved ones deal with
them. I need to know what to expect and I need to vent. Then I can make the
choice how to deal with my dad.

I have never closed my mind to my dad. The loss of my father is so enormous in
my life that I barely make it myself. I grasp whatever good or funny memories I
can to try to overcome the bad ones.

I agree with I think it's birdshawn who says more warnings should be given about
the effects of alcohol. Put up bulletin boards of adults sitting in their own
feces or bile on their clothes with cuts and bruises and blood from their falls
and bleeding esophagus. Maybe that will get more attention than the don't drink
and drive posters we have here. I agree with that, but I can't fight it right
now. I'm doing all I can at this point. I would love to take a senior class
through the house my dad lived in with the smells they will never forget and
then to the hospital to try to talk to him instead of a film about drinking and
driving. But I can't do it right now.

I think it's great you're doing all you can for Jen and I'm glad it's working.
Certainly if we could be more like you, this disease may get the recognition it
deserves, but for most of us, we're barely hanging on right now. That's what I
need this group for.

Amanda

---------- Original Message ----------------------------------
From: "Trevor Fossey" <Trevor.Fossey@...>
Reply-To: wernicke_korsakoff_syndrome@yahoogroups.com
Date: Thu, 04 May 2006 00:37:31 -0000

><html><body>
>
>
>Amanda 
>I don't think that throwing `new ideas' into the ring can 
>be `getting away from the problem'! The main problem is WKS � Jen 
>has WKS, the lack of Thiamine due to the alcohol has messed up her 
>hippocampus! 
>This site is about WKS! 
>� about the brain injury and how this can be dealt with. 
>- It is also about rehabilitation? 
> 
>I think that support is a very important element of the group � but 
>increasing our knowledge and understanding of this terrible illness 
>must also be one of the main aims � and also to share that knowledge 
>with the medical professionals. We can 'teach' them? It is only that 
>that can give hope � in your email you state that nobody can provide 
>answers. Lets try and find some answers � no matter how difficult a 
>path it is that we tread � as we (the suffers and the carers) are 
>the ones that are experiencing all the difficulties. 
> 
>In Jen's case, I could have just accepted the view of the 
>Consultants & other medics that the only place for Jen (and all 
>other persons with profound WKS)was in a geriatric nursing home (at 
>age 56!). But I preferred to try out some ideas. I was told by the 
>experts "there is no option other than a nursing home"!! This has 
>been proved to be wrong � and I am already spreading the news to the 
>professions. I like to think that I have made a difference � even in 
>the hospital that Jen was first in, I noticed towards the end of her 
>stay a sign up in the word that said "if anyone is admitted under 
>the influence of alcohol, consider administration of intravenous 
>Thiamine" 
> 
>Even if as a result we save one person from getting WKS that would 
>be something! 
> 
>I am not trying to denigrate all the problems that others in the 
>group have � or even making judgement calls. I know that every case 
>is different. I am just sharing my experiences with you all in the 
>hope that there can be other contributions to the debate/knowledge 
>share. I also share my experiences with many others � and also with 
>many other people, medics, lobby groups (re alcohol). 
> 
>I am trying to widen the debate re WKS so that we can get a better 
>understanding. I have some comments/questions. 
> 
>a) Amanda, you mentioned portal systemic encephalopathy. Although 
>Jen has continued to drink alcohol � mainly in moderation � her 
>liver functioning has vastly improved. I mentioned that she has 
>started Naltrexone � prior to starting the treatment she had a Liver 
>Function Test. It showed a measure of 128, which was above the norm 
>max of c 80 (?). But her last test two years ago showed a reading of 
>over 1,100! 
> 
>b) the normal view re WKS is that any intake of alcohol is harmful 
>to someone with the illness. 
>�� Is this true? What is the evidence? 
>�� If so, where is the controlled research? 
>�� If Jen had an intake restricted to 14 units a week � or even 
>less, 
>�� - would this be harmful? 
>�� - Would the benefits to "self-esteem" outweigh any downside? 
>�� - would increase self-esteem help willingness to gain insight 
>and then lead to an increasingly independent life? 
>�� - Would allowing alcohol as above take away the `self- 
>loathing'? 
>�� - but is the resultant craving worth it? 
> 
>I don't know the answers � and I cannot find out any research that 
>can help, despite searching. I know that people with brain injury 
>from a cause other than WKS are `permitted' to have alcohol and it 
>is not harmful to them. Therefore, can it be proved that alcohol in 
>moderation, and the feeling of self-worth and `being able to live a 
>normal life' is more beneficial than any harm that it does to the 
>WKS sufferer (who has a brain injury) 
> 
>I acknowledge your comments regarding alcoholism, Amanda, and will 
>be more than pleased to continue some form of debate direct with 
>you. Just a few thoughts, however: 
>1. People can be helped to keep off alcohol by medication, although 
>there is still a long way to go in the medical professions 
>understanding of the brain in this area. Some people can 
>be `treated' through rehab � medical drugs and psychological 
>treatment can assist to help stop the drinking, just as medication 
>can help for other illnesses 
> 
>2. Some alcoholics are so desperate to stop drinking that they have 
>operations/implants etc, but still cannot help themselves. Is that 
>normal? 
> 
>3. If a person has an eating disorder or depression that is a 
>recognised illness and medical treatment/psychological can help. It 
>is not just a question of choice. The view could be taken that 
>telling an alcoholic to stop (without any rehab or support) is just 
>like telling a person who has depression to `pull yourself together' 
>(as used to be done!). Depression is a recognised illness, with 
>treatment prescribed 
> 
>4. Attitudes change � in the trenches in the First World War nobody 
>recognised `shell shock' as an illness. The view was that the ill 
>person was just a coward and many ill people were shot by a firing 
>squad! Will the view re alcoholics change also over the next 100 
>years, as the knowledge regarding the brain improves? 
> 
>Amanda � please have an open mind. You Dad is not a bad person and 
>after having a drink he probably suffers so much self-loathing and 
>disgust at his actions (even if he does not show it) � there is 
>something in the way that his brain works, however, that makes him 
>inclined/choose to drink alcohol. The point that I am making is that 
>if the medical profession could find out what it is, they could 
>treat it and he would be `helped' 
> 
>Incidentally, Amanda, I too used to think that it was just a 
>question of will power. I have drunk alcohol � and on occassions too 
>much - but I could control it and could not understand why others 
>could not. (I thought that it was just because they were `weak 
>willed'!). And I could not understand why smokers could not just 
>give up (especially in the knowledge that it harms themselves and 
>others � I have never smoked). Taking Jen to the AA meetings, 
>however, I met and conversed with around 300 alcohols over the 
>course a month or so. And I read books widely. Meeting all those 
>people really opened my eyes � ranging from `down and outs' 
>(my `view' of what an alcoholic was'!) to smart housewives and 
>professionals (a Consultant, solicitors, etc). It certainly changed 
>my views. 
>Have you met many alcoholics? Please do not try to be pre- 
>judgemental. 
> 
>Sorry to go on at such length but I want to stimulate debate 
> 
>I am inclined towards the view that the prognosis for Jen is: 
>1. Treat the alcoholism � abstain (or a safe level???) 
>2. will then lead to the WKS not getting worse 
>3. then Cognitive Rehab for the brain injury 
>4. will lead to Insight, awareness then acceptance 
>5. which will lead to increasing independance 
> 
>Out of interest, try an internet search on "HM and Hippocampus". 
>That has given me information that helps understand the brain injury 
>that Jen has suffered. It also led me to a site from South 
>California University that reported on research where a silicon chip 
>had been implanted into the brain of a rat to take on the functions 
>of the hippocampus! Who knows what could happen within the next few 
>years? Even more reason to try to get increased 
>knowledge/understanding of WKS? 
> 
>Should this group also become a pressure/lobby group to get: 
>a.�� increased awareness generally regarding WKS 
>b.�� more research into the illness? 
> 
>Any views? 
> 
>With very best wishes to all 
> 
>Trevor 
> 
> 
> 
>Out of interest, a few quotations regarding pre-judgement: 
>Chester Barnard: 
>�� It is what we think we know that keeps us from learning. 
>Leonardo Da Vinci 
>�� You do ill if you praise, but worse if you censure, what you do 
>not understand. 
>Jean Jaques Rousseau 
>�� Do not judge, and you will never be mistaken. 
>Lucius Seneca 
>�� If you would judge, understand. 
>William Hazlitt 
>�� Prejudice is the child of ignorance. 
> 
> 
> 
> 
>
>
>
>
> 
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