--- In wernicke_korsakoff_syndrome@yahoogroups.com, "Beccah"
<babyonyx@...> wrote:
>
> Mari-
>
> Hang in there. . Unfortunately, this is a diesease with very few
cut
> and dry answers. . As you read through the boards, you will see
that
> every situation is so very different while still being the same. .
> If you read back on the string you respnded from, you will see my
> post and others that saw the symptoms years before there was a
> diagnosis, and didn't know enough to speak up, either. . I know
> that guilt all too well. My mother does still function to a
certain
> degree on her own. But, she is only 48 with a lot of life ahead of
> her. . All her normal activites are gone- she sleeps late, plays on
> the computer, and with her pets. . The fact of the matter is that
> none of us had any way of knowing what was happening to our loved
> ones. . We couldn't have spoken out because we didn't know what it
> was we needed to say. .
>
> There is an extreme lack of information on this disease. . There
> were a few at one time discussing ideas on education and getting
the
> word out about this. . I wonder if they are still trying to do so,
> and how it is working. .
>
> Take care,
> Beccah
>
> --- In wernicke_korsakoff_syndrome@yahoogroups.com, "maristimie"
> <maristimie@> wrote:
> >
> > my father in law diagnosed with wk last week. still in hospital,
> > being treated for various other, mostly alcohol related
illnesses,
> > including withdrawal symptoms which kicked in after a couple of
> days
> > in hospital. no sure prognosis just yet because unable to carry
> out
> > full assessment until his health improves. he started
> > going 'downhill' after a serious fall down a flight of stairs two
> > and half years ago, subsequently had to stop working, and them
> moved
> > into care home(against his will) when he broke his arm a few
> months
> > ago. he is only 63 and has lived on his own for 10 or 12 years so
> > very difficult to get used to sharing room and with 'old people'.
> > when wk diagnosed and we read about symptoms, we were quite
> shocked
> > to recognise so many (just about all) and for quite a few years
> > already. my husband has always had a fairly good relationship
with
> > his dad, but also very cross and disappointed with him sometimes.
> of
> > course now he feels guilty. and the fact that we live in a
> different
> > country, thousands of miles away, is not helping. we're not sure
> > about a lot of things at the moment. will he stop drinking? he's
> > unable and has been since his first fall to practice his hobbies,
> > golf etc what will he do all day? he has spent the last year or
> two
> > sleeping until late in the day and then meeting friends for a
> lunch
> > which would often continue until late night. more guilt, because
> we
> > all saw this happening, and maybe did not do enough to get him
out
> > of vicious cycle? but then, he did not do much himself?
> > sorry, reighning in! just so glad to have found this group. will
> > keep in touch. any words of encouragement will be appreciated.
> till
> > later
> > Mari
> >
> > --- In wernicke_korsakoff_syndrome@yahoogroups.com, "ibcarrieat"
> > <ibcarrieat@> wrote:
> > >
> > > Beccah,
> > > You are one of the lucky one's. I wish my dad would stop
> drinking.
> > > He's slowly killing himself. I came to grip with that long ago.
> > Way
> > > before he was diagnosed with the WKS. He's also suffering from
> > > congestive heart failure. He was readmitted to the hospital on
6-
> > 30-
> > > 06. From there he was placed in a nursing home. According to
> Adult
> > > Protective Services, he will never recover. I know from his
> > history,
> > > no one can say how much memory he'll regain for at least two
and
> a
> > > half months. I'm not keeping my hopes up though. This is our
4th
> > or
> > > 5th episode withing almost 4 years (that we know of). He's also
> > 800
> > > miles away and I have yet to see him because of my own health
> > > issues. I'm facing the loss of mobility in my right ankle due
to
> a
> > > break several years ago, along with two failed surgeries. It
may
> > > have to be "fused". Driving that far is tough. I rely on his
> nurse
> > > for weekly updates. He's currently in an Alzheimer's unit. They
> > tell
> > > me he doesn't belong there. That he's too adavanced for these
> > > patients. He still has his intellect, he just can't remember
> > > anything from the present, has trouble making it to the
bathroon
> > and
> > > has trouble walking. I don't have the answers as to where he
> > > belongs. I know he cannot function on his own. Although he most
> > > likey would not agree. So in the meantime, we wait. Wait to see
> > > what's next.
> > > Thanks for listening....
> > > Carrie
> > > --- In wernicke_korsakoff_syndrome@yahoogroups.com, "Beccah"
> > > <babyonyx@> wrote:
> > > >
> > > > Carrie, FYI- my mom is "dulcineasmom", or Nora, on here.
> > > > Well, she quit drinking on a regular basis, but I don't know
> > > exactly
> > > > how much she does drink anymore. From her behavior, not
> much.
> > It
> > > > was a pretty good wake up call for her that her alcoholism
> > caused
> > > > this disease. I've heard many who suffer say if they had
only
> > > known
> > > > it could cause this. . . .on and on. . We've had a diagnosis
> > for
> > > 5
> > > > years, but have been dealing with it for almost 7 years now.
> It
> > > > gets hard. . and there is no end in sight. . But, the truth:
> I
> > am
> > > > very grateful that I still have her- in whatever capacity
that
> > may
> > > > be. I have friends without mothers that are my age. . So, I
> try
> > > to
> > > > remind myself that, as difficult as it is for me, for my
> sister,
> > > and
> > > > especially for my mom, atleast we still have her. . I'd
rather
> > > have
> > > > her and fight this disease for the next 20 years than to not
> > have
> > > > her. . But, she is not a most extreme case, so that makes it
> > > > easier. . We get by. . with eachother's help. .
> > > >
> > > > --- In wernicke_korsakoff_syndrome@yahoogroups.com, carrie
> > > > buckingham <ibcarrieat@> wrote:
> > > > >
> > > > > Beccah,
> > > > > Has your mom stopped drinking? 5 years with this disease?
> I
> > > > cannot imagine going through this for that long.
> > > > >
> > > > > Carrie
> > > > >
> > > > >
> > > > > Beccah <babyonyx@> wrote:
> > > > > I am lucky in the fact that my mother has the
> > > > encephalopathy and not
> > > > > the korsakoff's part of the wernicke's. She is able to live
> on
> > > her
> > > > > own, but not without help. I go help her clean, have to
give
> > he
> > > > > money, make sure everything in her life is in order. (She
> will
> > > > read
> > > > > this and not have heard part of this before).
> > > > >
> > > > > I remember when this whole thing first started. She started
> to
> > > > > hide in her room, act kind of funny, sleep all the time. At
> > the
> > > > > time, I attributed her eccentric behavior to her
alcoholism.
> I
> > > had
> > > > > dealt with that for so long that I was almost immune to any
> of
> > > the
> > > > > consequences she faced from her drinking. But, the medical
> > > > problems
> > > > > started, and didn't get better. It took almost 2 years from
> > the
> > > > > point I knew there was a medical issue to the point that we
> > had
> > > a
> > > > > diagnosis. Every day I wonder what might have happened if I
> > had
> > > > not
> > > > > been so callous and opened my eyes and my mouth about what
I
> > saw
> > > > > happening to her. Had I been more proactive, had I thrown a
> > fit
> > > at
> > > > > the doctors. . would it have made a difference? Chances
are,
> > > > > probably not because these doctors don't usually find
> > wernicke's
> > > > is
> > > > > until they have exhausted any other possibility. It's been
5
> > > years
> > > > > since we got a diagnosis- the guilt hasn't gone away yet.
> The
> > > > > questions never seem to get answers.
> > > > >
> > > > > Like I said, my mom can function to a degree on her own,
and
> > > that
> > > > > is my saving grace. But, the constant worrying, the needing
> to
> > > > check
> > > > > in on her every day. . the concerns over money and food and
> > her
> > > > car
> > > > > and apartment. . the concerns about her mental and
emotional
> > > > > state. . It wears on me. I'm 26 myself, and think often
that
> > it
> > > > > should be my parents going through this kind of stuff with
> > their
> > > > > parents. My mom is only 48 years old. It is not fair. But
> the
> > > > > truth is, it's my mom, and I have a responsibility to her.
> And
> > I
> > > > try
> > > > > so hard not to let her down. It is hard and I cry sometimes
> > that
> > > I
> > > > > want my life back. I want her to have her life back, too. .
> > > > >
> > > > > I wish I could offer some sort of advice, some light at the
> > end
> > > of
> > > > > your tunnel. But, the truth is I'm sitting smack in the
> middle
> > > of
> > > > > the United States feeling the same way you are over
there. .
> > > Know
> > > > > that you are not alone. . There are those of us feeling the
> > same
> > > > > way, and hoping someone else has answers. . I am here, for
> > > > anything
> > > > > you may need. .even if it just someone to commiserate
> > with. .We
> > > > are
> > > > > all here. . That's why we are here. . Hang in there. It is
> not
> > > an
> > > > > easy road we travel, but we will get there one of these
days.
> > > > >
> > > > > Beccah
> > > > >
> > > > >
> > > > >
Girls I completly agree with wot your saying about drinking.
Last week I had to go to my Aunties Funeral. (85 non drinker), in
Sydney.
And I bumped into an old friend that I've known for 30 years and out
of say 10 people that I used to drink with heavely a lot 20 years
ago, as I moved outta Sydney in 1987 we really did'nt keep in touch.

Ok get this, out of the 10 heavy drinkers, 4 have died from drinking
that he new of .
1 from liver failure caused from drinking of course. 1 from suspected
numanic depression until the altopsy then, they found it to be KS. He
lived alone in a 1 b/unit which was a pig stye. And went crackers
like I'm going, (but I have a big sign on my notice board KEEP
CLEANING to keep me prompted).
1 hung himself and, on the table was 4 empty bottles of vodka that
was not there that morning. The other.... I forget (wks again), but
grog realated. And of course My 3rd missus. All about my age 43..!
Cripes Assies have always known to be good drinkers, but it appears
to be knocking us off a bit to early.
Thanks to all for posting.
I'm normally on the side when I think of it!
John



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