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.