I have some questions that although there seems to be numerous
descriptions of this disease, i cant find any that are anything but
basic. My mother has alchoholic dementia and end stage cirrohsis, and
yes, she still drinks. Any advise?

I am sorry for your loss.  I think that you will need to go into yahoo groups and unjoin in order to stop receiving e-mail messages. 

 
-----Original Message-----
From: thomas mullin <tamullin25@...>
To: wernicke_korsakoff_syndrome@yahoogroups.com
Sent: Sat, 19 Mar 2005 20:56:47 -0800 (PST)
Subject: Re: [wernicke_korsakoff_syndrome] Pamela Need Your Help!

stop e-malind me he dyed.

sellick_67ecw <zedwan_@...> wrote:

Hi Everyone,

Well what the home have been waiting for, another incident. 

Dad was refused his cigarettes and he went mad.  He upturned a snooker
table and threatened to throw the balls at other residents.  He also
lifted his zimmer and tried to hit it off a window.  Luckly nobody was
badly hurt, dad did hit his face off the snooker table. To cut a long
story short, police were called and the home told me they wanted him
to leave there and then.  He was sent to "Levendale" a psyc hospital.
They took one look at him and sent him back to the home as they said
he has a condition and not something that is new.  Basically the home
can't deal with him. 

Emergency meetings again this week, Social Workers, Psyc the home and
me.  The home have told me that we need to find alternative
accommodation.  Social work say "that's easier said than done!".

The manager of the unit has washed her hands of my dad and is refusing
to deal with him and has told her staff it is up to them.  It has now
got personal with her and I am really worried for him.  My dad's main
carer has told me to go to the "Care Commission" (government body)
that monitors care in homes in Britain.  3 other families have
reported the home with concerns for their families.  Aparently there
is another 4 they want OUT!.

Pamela can you e mail me the details of your mum's home I don't know
where to turn but would like to go and see it.  Zedwan_@...

Will see what the social work come up with too.

Ann







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Hi Everyone,

Well what the home have been waiting for, another incident.

Dad was refused his cigarettes and he went mad.  He upturned a snooker
table and threatened to throw the balls at other residents.  He also
lifted his zimmer and tried to hit it off a window.  Luckly nobody was
badly hurt, dad did hit his face off the snooker table. To cut a long
story short, police were called and the home told me they wanted him
to leave there and then.  He was sent to "Levendale" a psyc hospital.
  They took one look at him and sent him back to the home as they said
he has a condition and not something that is new.  Basically the home
can't deal with him.

Emergency meetings again this week, Social Workers, Psyc the home and
me.  The home have told me that we need to find alternative
accommodation.  Social work say "that's easier said than done!".

The manager of the unit has washed her hands of my dad and is refusing
to deal with him and has told her staff it is up to them.  It has now
got personal with her and I am really worried for him.  My dad's main
carer has told me to go to the "Care Commission" (government body)
that monitors care in homes in Britain.  3 other families have
reported the home with concerns for their families.  Aparently there
is another 4 they want OUT!.

Pamela can you e mail me the details of your mum's home I don't know
where to turn but would like to go and see it.  Zedwan_@...

Will see what the social work come up with too.

Ann

Heather,
Yes for the past 39 weeks he thinks he knows everyone
he meets, although this has improved since he's moved
in to the residential home. I have more problems with
the place he is at now. He has a review meeting on
Wednesday which I will attend with my dad. From
conversations I have had with staff they feel that he
has been wrongly placed (which I agree with) as they
are far more used to dealing with people with physical
difficulties. They don't seem to realise that my dad
does have memory problems esp short term, they have
allowed him to get into a routine of sleeping till
late afternoon, he doesn't come out of his room till
about 8 at night when he rings me (normally in tears
because he hates it so much)and then he stays up with
the night staff till 5 in the morning! This routine is
fine but I have no idea what my dad can do for
himself, I know he can get dressed and make himself a
drink, but hes not eating appropriately and I dont
think he would eat at all if he was not prompted. My
dad phones me every night and asks me the same
questions e.g why am I here? Is it because of my hip?
(he broke it two years ago, but doesn't remember) when
will I be able to drive again? etc etc. I'm finding it
VERY hard. When I mentioned to staff about my dad
crying and that I was worried he was depressed they
said 'it was that time of year and they were feeling
quite depressed too!!'. It's so frustrating that
nobody seems to understand there.
Kaye
--- heatherswanson1873 <heatherswanson1873@...>
wrote:
>
> Hi,Kaye! My name is Heather. I was diagnosed with
> Korsecoff Syndrome
> about a year and a half ago. I just read your e-mail
> about your
> father. I'm really upset at the facility your father
> is in right now
> for allowing him to make his own decisions regarding
> how he spends
> his money. I know it is his money, but right now, he
> is in NO
> position in deciding how to spend his money. Having
> Korsecoff
> totally skews your decision making. I had to move
> back to my home
> state of Minnesota after I was diagnosed. I was
> SHOCKED, as was my
> family, to unpack a supprise of new cloths I had
> acquired while
> under the influence of Korsecoff. For some reason,
> the brighter and
> more out ragious the cloths were, I bought them.
> It's interesting
> because I was really drawn to bright and funky
> colored things. I
> don't get that way anymore though. Has your father
> experienced
> thinking he knows everyone from somewhere before?
> This was a real
> problem for me at first. I thought, and was
> convinced, that I knew
> the stranger that I had just met from before. This
> went on for about
> 6 months after my seizure. It doesn't happen to any
> more. I'm not
> sure why. My memory is getting better though. I've
> been on the drug
> called Aricept, taking a multi-vitamin, vitamin B-1,
> vitamin B-12
> and vitamin E. I hope some of this information can
> help and best of
> luck with your recovery.  -Heather
>
>
>
>

Send instant messages to your online friends http://uk.messenger.yahoo.com

i don't know where you are but if you put an agressive male in a nursing
home environment they will give him a monthly shot of depovera to curb his
sexual agression.

jonell
----- Original Message -----
From: "sellick_67ecw" <zedwan_@...>
To: <wernicke_korsakoff_syndrome@yahoogroups.com>
Sent: Tuesday, March 08, 2005 3:48 PM
Subject: [wernicke_korsakoff_syndrome] Pamela


>
>
>
> Hi Pamela,
>
> Sorry to hear what happened to your mum.  It is a nightmare, I don't
> know about you but I feel dad is just existing.  There is no real
> quality of life.  Only smoking!!
>
> My dads psyc reviewed him last week and to cut a long story short he
> feels the home are coping really well with dad, but I am only waiting
> until the next incident happens are we will be back to square one.  He
> kept reminding me that it is the part of the brain that is damaged and
> he has no control over his emotions (aggressive or sexual) and when he
> shows signs of "in-appropriate behaviour" it is not his fault.  This
> is also very hard to deal with.  There was an incident in a shopping
> centre last week, and they won't take him out in public now.  He
> touched someone and they got upset.  Understandably!  He has never
> shown any behaviour like this with me but has made suggestive comments
> to the carers.
>
> His social worker has told me that there is no where else he can think
> of for dad unless it is a nursing home and they won't be able to cope
> with aggressive behaviour either.  The social worker did another risk
> assessment and he is happy that the home are meeting his needs and is
> pushing to keep him there.  But the Matron and the manager of the home
> are only looking for an exscuse to get rid of him.
>
> I have lost faith with them but dread what will happen next.
>
> Keep me posted on your mum, but what I will say is that dad's psyc
> does not want him drugged.  Dr Summers is his name, have you heard of him?
>
> Ann
>
> XX
>
>
>
>
>
>
> To Post a message, send it to:   wernicke_korsakoff_syndrome@eGroups.com
> To Unsubscribe, send a blank message to:
> wernicke_korsakoff_syndrome-unsubscribe@eGroups.com
> Yahoo! Groups Links
>
>
>
>
>
>
>

Hi Pamela,

Sorry to hear what happened to your mum.  It is a nightmare, I don't
know about you but I feel dad is just existing.  There is no real
quality of life.  Only smoking!!

My dads psyc reviewed him last week and to cut a long story short he
feels the home are coping really well with dad, but I am only waiting
until the next incident happens are we will be back to square one.  He
kept reminding me that it is the part of the brain that is damaged and
he has no control over his emotions (aggressive or sexual) and when he
shows signs of "in-appropriate behaviour" it is not his fault.  This
is also very hard to deal with.  There was an incident in a shopping
centre last week, and they won't take him out in public now.  He
touched someone and they got upset.  Understandably!  He has never
shown any behaviour like this with me but has made suggestive comments
to the carers.

His social worker has told me that there is no where else he can think
of for dad unless it is a nursing home and they won't be able to cope
with aggressive behaviour either.  The social worker did another risk
assessment and he is happy that the home are meeting his needs and is
pushing to keep him there.  But the Matron and the manager of the home
are only looking for an exscuse to get rid of him.

I have lost faith with them but dread what will happen next.

Keep me posted on your mum, but what I will say is that dad's psyc
does not want him drugged.  Dr Summers is his name, have you heard of him?

Ann

XX

Ann

Hows things with your dad?  They tried to lower my mums medication
again taking off a night tablet in December we are now seeing the
effects of this.  She is attacking staff and verbally abusing them.
Pulled one of the carers hair last Friday and scratched another ones
arm.  So doctor was in on Tues and she has been re-presecibed the
tablet.  Nightmare I have just came to the conclusion now that she
will be heavily dedated for the rest of her life as this is what
happens when they try to reduce her medication.  To be honest she's
maybe better knowing not much about it!

Get this the home called the pyschatrist and he told them there
isn't any more input they can give!!!!  That's what your up against
as you are well aware.

Let me know how your dads doing?

Take care

Pamela

Hi,Kaye! My name is Heather. I was diagnosed with Korsecoff Syndrome
about a year and a half ago. I just read your e-mail about your
father. I'm really upset at the facility your father is in right now
for allowing him to make his own decisions regarding how he spends
his money. I know it is his money, but right now, he is in NO
position in deciding how to spend his money. Having Korsecoff
totally skews your decision making. I had to move back to my home
state of Minnesota after I was diagnosed. I was SHOCKED, as was my
family, to unpack a supprise of new cloths I had acquired while
under the influence of Korsecoff. For some reason, the brighter and
more out ragious the cloths were, I bought them. It's interesting
because I was really drawn to bright and funky colored things. I
don't get that way anymore though. Has your father experienced
thinking he knows everyone from somewhere before? This was a real
problem for me at first. I thought, and was convinced, that I knew
the stranger that I had just met from before. This went on for about
6 months after my seizure. It doesn't happen to any more. I'm not
sure why. My memory is getting better though. I've been on the drug
called Aricept, taking a multi-vitamin, vitamin B-1, vitamin B-12
and vitamin E. I hope some of this information can help and best of
luck with your recovery.  -Heather

Hi,everyone!It's Heather again.I have a question to ask of you guys.
I have been experiencing these weird "rushes" in my head. They last
for about 2 minutes. Along with the rushes my face becomes flushed,
I get a burning sensation down my left arm, my mouth waters
profusely and a feel a premenition that something bad is going to
happen. This has been going on for about 10 months or more.If a
fellow WKS survivor has experienced these same symptoms, please get
back to me and let me know some of your experiences. The
neurologists I have seen have been unable to determine what is going
on with these. However,I am meeting with a new neurologist this
friday. I would appreciate any comments and insight anyone has.
Thanks a lot. - Heather

http://www.ardice.com/Health/Conditions_and_Diseases/Nutrition_and_Metabolism_Di\
sorders/Vitamins_and_Minerals/Wernicke-Korsakoff_Syndrome/
Hello, I found this group at this website.

Hi,
My dad has moved to a residential home after 33 weeks in hospital,
after been told by numerous doctors, the psychologist etc that he
would never learn new information he is proving them wrong. On the
week he was due to move I took him to visit the home and he
remembered going for a whole week he went on about it. He is now
able to recall some of the things he has done that day like if he
has had a shower, what hes eaten which is a major improvement. Some
of the things that have happend over the last 2-3 years have also
come back (like breaking his hip, where he was living etc). Don't
get me wrong there is still alot he can't remember and he gets mixed
up and he still phones me up to ask me the same questions he has
been asking for the last 35weeks, he still doesn't have any insight.
This has been a bit of a shock, esp when he had phoned me to say
he'd gone to the shop alone across a busy road to buy cigerettes and
a bottle of whisky with my money I had left with the staff to hold.
After three days he had smoked 80+ cigerettes and spent the money
that was supposed to have lasted him the week. The staff that were
supposed to have held the cigeretes and money said that they were
uncomfortable holding his money and that he had a personnal choice
about what he spent it on. Which I agree with but not when he spends
it all in three days and it's my money (because the court of
protection are being so slow to allow access to his)which I can't
afford to fund anymore than the agreed amount. We have come to an
agreement but has anyone else had experience of this? Intrestingly
although he brought the whisky he hasn't drunk it all yet...
Thanks,
Kaye

Hi,Cam! My name is Heather. I was diagnosed with Korsecoff Syndrome
a year and a half ago after I had a seizure. I thought I might tell
you about some of my experiences in hopes that they will be helpful
to you. Initially, there were some doctors that didn't offer a lot
of help. It is important to find doctors who understand Korsecoff
and possible treatments. One thing I feel you should be aware of is
that for me, I needed a lot of sleep. I have also been doing a lot
of different things to aide in my recovery. One, I started right
away on a drug called Aricept (10 mg). I have been taking it every
day for about a year and a half and I believe it has really helped
with my memory. I have also been taking a multi-vitamin, B-1 (100
mg) and B-12 (500 mg) once daily. I have come a long way since my
accident and have had to deal with many obstacles, but I still have
high hopes. I hope I may have been of some help and good luck with
your recovery.  -
Heather

-



-- In wernicke_korsakoff_syndrome@yahoogroups.com, birdshawn@a...
wrote:
> ok guys, if at all possible, could you please tell me how your
loved one or
> yourself were diagnosed??? i'm gonna save them on a floppy and
give it to Dr.
> Do-Little.Any response would be appreciated, don't forget to add
the person's
> age, i want Dr. Do-Little to get his eyes opened.
>
>   Thanks      Shawn......

Amanda:  I agree with the others that Alanon and ACOA and any support group or therapist can help you.  When my mom was first diagnosed I saw a therapist who by coincidence specialized in substance abuse as well as geriatric issues and she really helped me problem solve through the issues I was struggling with.  When I would leave my weekly appointment I would feel empowered to handle the situations I was faced with.

I disagee however, that medication is out of the question.  After about a year of juggling everything, I felt very much as you do.  I hadn't really thought about medication until at a physical my new doctor simply asked me how I was and I burst into tears.   She recognized that I was clinically depressed and she prescribed an anti depressant (Celexa) and it has made a tremendous difference in my life.  Tremendous but very subtle.  Everyone is diffrent but my experience is that it helped me a great deal and continues to do so.  I am a better person for it.  I would recommend you discuss how you are feeling and coping with your doctor and together decide what would work best for you.  You are not alone.  Our group is also a great resource.  Good Luck and Take Care, Kathy


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Amanda:  I agree with the others that Alanon and ACOA and any support group or
therapist can help you.  When my mom was first diagnosed I saw a therapist who
by coincidence specialized in substance abuse as well as geriatric issues and
she really helped me problem solve through the issues I was struggling with. 
When I would leave my weekly appointment I would feel empowered to handle the
situations I was faced with.

I disagee however, that medication is out of the question.  After about a year
of juggling everything, I felt very much as you do.  I hadn't really thought
about medication until at a physical my new doctor simply asked me how I was and
I burst into tears.   She recognized that I was clinically depressed and she
prescribed an anti depressant (Celexa) and it has made a tremendous difference
in my life.  Tremendous but very subtle.  Everyone is diffrent but my experience
is that it helped me a great deal and continues to do so.  I am a better person
for it.  I would recommend you discuss how you are feeling and coping with your
doctor and together decide what would work best for you.  You are not alone. 
Our group is also a great resource.  Good Luck and Take Care, Kathy

Alanon and also Adult Children Of Alcoholics (ACOA), if there is a
chapter of that by you, can help. Been there, done that, still doing
that, though thankfully no where near as much as before. Good luck
and please feel free to vent and scream at us as well :)

--- In wernicke_korsakoff_syndrome@yahoogroups.com, Nora
<dulcineasmom@y...> wrote:
> Amanda....for yourself and hopefully eventually your
mom......ALANON!!!  If there's a chapter locally call them.  They
are on the internet too.  If there's not a chapter locally, find the
nearest one!!  It WILL be worth it.  Medications are not the
answer.  Believe me, been there done that.  Seen lots of others in
the same boat as you.  CALL THEM!!!
> Nora

I have a question for all of you.  Any feedback would be
appreciated.  My dad was an upstanding business man in our small
community.  He now does not bathe for weeks at a time; continues to
drink and deny it, classic alcoholic.  You all know what my life's
become.

Here's my problem.  This has been an ongoing, daily nightmare for
over a year now.  My mother depends on me for all of her emotional
support.  She feels since I'm living it with her, I understand
better than anyone.  My mom refuses to look at the reality of the
situation; it does not appear that he will stop drinking and his
health is failing rapidly.  My dad's two brothers come through me
for help dealing with him and their feelings (their father was a
very bad alcoholic) I've become the one handling everything.

I work for a criminal/domestic relations attorney who depends on me
for absolutely everything.  I have four step-children.  I have a
husband, who is the best, most wonderful supportive man I could have
chosen, and I love taking care of him, but it's still more things
for me to do.

My dad calls me often, sometimes screaming obsenities at me,
sometimes crying.  I have a brother that is no help, actually, to
add to the hysteria of our last year, two weeks ago my brother
married a girl we didn't even know he was dating, although he too
lives in our little town.

Anyway, here's my question.  There are many days I feel exhausted,
stressed beyond words and I know there is no solution in the near
future.  I've been thinking of asking my doctor for something to
help me through the very bad days.  I'm very afraid to do this
because I'm afraid of becoming dependent on anything.  My husband
feels it would be good for me (sometimes, more often lately, when I
get off the phone with one of my family members I scream as loud as
I can because I am so frustrated) Are any of you taking anything to
help you with the stresses of dealing with someone with this
disease?  If so, what?  How do you feel?  If not, how do you cope?
I've talked to my doctor in the past, I have no health problems, I'm
young (31) so there are no risks physically to me, I'm just afraid
to try anything.

Any ideas?

Amanda

Thanks to everyone for all your concern.

Sorry I haven't picked up your posts, busy week!

Dad's psyc called me last night and told me that in his opinion he is
in good health considering his condition.  He told me that dad's brain
is very badly damaged and his aggressiveness can go from 0 - 10 in a
split second and he can't control it.  He kept reminding me that it is
the condition and not the person that is doing these things.  That was
quite nice of him to try and comfort me but I hope the staff who treat
our relatives remember this also.

At the moment dad gets 20 cigarettes and 10 cigars a day, which is £50
per week.  I pay half of this myself.  He advised to increase the
amount to 40 per day because after all it is about quality of life and
if this will ease his frustration, then why not?  He said that he has
written to our Government to suggest that "nicotine" be given on
prescription as this can help better than any drug he can prescribe.
Food for thought!

He believes the increase in cigars will ease some of the tension and
they should be better able to manage my dad.

Thanks for your info on the Care Commission Pamela, will certainly be
contacting them regarding this.

Thanks again, will keep you posted!

Ann

XX

-Thanks Pamela,

I am worried sick.  Have a meeting with the psychiatrist on Friday
so will let you know what happens.

FYI - Hamilton is about 1/2 hour drive from me.  What worries me is
that "Ardencraig" is a specialist Korsakoffs unit and they are
saying they are not coping with him.  There are a lot of staffing
problems in the home, a few have been sacked for smoking HASH. 
Another girl has reported them to the Care Commission and resigned,
but I don't know on what grounds. 

I wish now I had told Social Work about the incident when the carer
had hurt my dad but I thought we could have dealt with it between
ourselves.  I am going to make them aware of it and what I have
heard re the staffing issues.  Is it my dad who has the problem or
the staff who are treating him?

Keep you all posted.  PS: not just speaking to Pamela, but she lives
very near me and has had problems with her mum in the same
circumstances.

Ann











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Hi Ann

I am really sorry to hear about your dad.  As you know I was in this
position a few months ago at Murdeston Castle.

My mum has been moved to Douglas View Nursing Home in Hamilton this
is a dedicated Korsakoff unit with only 12 beds (I think) no more
than 15 for sure.  Ther are five residents in it at present.  Four
ladies including my mum and one gentleman. 

My mum has coped fine with the move all be it she will not socialise
with any of the other residents and spends most of her day in her
room sleeping or listening to music but it is not for the lack of
trying to get her to go into the main room.  ( I personnaly think
she may have had a bad expereince of this in the past being forced
to go and sit somewhere) if she doesn't want to go the girls don't
force her.  Also the amount of medication she is on it is no wonder
she is sleeping most of the time but they have reduced this a bit
however swings and roundabouts as this is when her behaviour changes
and she becomes aggressive - but they are trying.  I sometimes think
she is better out of it and not aware of her surroundings as it
would break her heart.  She is not been near as aggressive as what I
was told she was like in Murdeston Castle and I guess some of that
is down to the way you handle people.

I know exactly what you are going through it is so frustrating as no
one gives you any help at all including social work you are
basically left to your own devices to go and find a suitable place
which you know is very hard in our area.

Why don't you give Douglas View a call and go and see it.  Or you
are more than welcome to come over with me.  I don't know how handy
Hamilton would be for you.  Does your dad have a community
phsychatrict nurse that could give you some input that is how I
found out about Douglas View the socila work department didn't even
recommend it to me.

Let me know how you go.

Take care

Pamela  





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Hi all,

 

Having reviewed my last posting, and looked at those of others I realise, I did not exactly tell how my father was diagnosed - he was actually diagnosed in a general medicine ward, prior to being seen by a psych. doctor, and in the absence of knowledge of alcohol abuse, so I can't really complain about the diagnosis - only the lack of facilities/help for sufferers and families after the event!

 

Re. the Scottish places, I am sorry to have to say that as far as I am aware (as communicated by my mother - I am in Barcelona at the moment) the chief nurse at Eastercroft where my father resides has lost his position for some reason i.e. not resigned - still no other firm news on that so wouldn't want to tar him further - I liked the fella too - and he was better than some other staff they have there, so I am curious to know the story - if I find out, and it is suitable for posting I will keep you all informed.

 

Re. your last Ann, I think you should definitely at least mention any complaints/discrepancies to Social Work - it may just be the tip of an iceberg, but if nobody mentions anything, nothing will happen!!

 

All the best,

 

Steve xx

sellick_67ecw <zedwan_@...> wrote:

-Thanks Pamela,

I am worried sick.  Have a meeting with the psychiatrist on Friday
so will let you know what happens.

FYI - Hamilton is about 1/2 hour drive from me.  What worries me is
that "Ardencraig" is a specialist Korsakoffs unit and they are
saying they are not coping with him.  There are a lot of staffing
problems in the home, a few have been sacked for smoking HASH. 
Another girl has reported them to the Care Commission and resigned,
but I don't know on what grounds. 

I wish now I had told Social Work about the incident when the carer
had hurt my dad but I thought we could have dealt with it between
ourselves.  I am going to make them aware of it and what I have
heard re the staffing issues.  Is it my dad who has the problem or
the staff who are treating him?

Keep you all posted.  PS: not just speaking to Pamela, but she lives
very near me and has had problems with her mum in the same
circumstances.

Ann

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Hi, everyone out there! It's Heather again. To refresh your
memories, I am 34 years old and was diagnosed with Korsecoff Syndrom
about a year and a half ago. I was wondering if anyone out there
with this same condition also had problems with their tongue. Ever
since my seizure, I have had what has been diagnosed
as "Geographical tongue." It's due to a viamin B deficiency, which
is also attributed to Korsecoff Syndrom. I am on vitamin B
supplements and multi- vitamins and I also apply a topical treatment
for it. Nothing seems to work and I have had it for over a year now.
If anyone has any suggestions on how I might treat this ailment I
would greatly appreciate it. Thank you! - Heather