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Medical Forum / Diseases and Disorders / Alzheimer's / August 2005

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Support Meeting

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genileuqcaj@aol.com - 17 Aug 2005 06:03 GMT
I am going to my first meeting on Thursday.  What can I expect?  I
received an email from the moderator?  group leader?  telling me there
would be no guest speaker.  Will it be lots of sad stories and crying?
Will it be so depressing that I will not want to attend future
meetings??
JM Van_Horn - 17 Aug 2005 06:18 GMT
It really depends on the group and the moderator.  All I have been to have
been from good to very good.  Without a guest speaker I would guess that
people will be sharing their experiences and the moderator may give out
information.  I got a lot of good information from other people sharing
their experiences.  I took notes on their experiences with various service
organizations, placements, hired help, lawyers, products, problems and meds.
At some meetings some people do cry - I know I did.  At some meetings I got
sick of hearing from the same motormouth - a good moderator helps in a case
like that.  There's nothing like hearing what's going on from people going
through similar things.

Joan

> I am going to my first meeting on Thursday.  What can I expect?  I
> received an email from the moderator?  group leader?  telling me there
> would be no guest speaker.  Will it be lots of sad stories and crying?
> Will it be so depressing that I will not want to attend future
> meetings??
Evelyn Ruut - 17 Aug 2005 12:58 GMT
>I am going to my first meeting on Thursday.  What can I expect?  I
> received an email from the moderator?  group leader?  telling me there
> would be no guest speaker.  Will it be lots of sad stories and crying?
> Will it be so depressing that I will not want to attend future
> meetings??

I thoroughly enjoyed our support group meetings locally.  It was run by a
wonderful, kind, local woman, and we were all so glad to be out of the house
and talking to other caregivers who understood what it was all about, that
it was great.   We helped one another, gave one another advice, and shared
experiences.  I found the whole thing very positive.
Signature


Best Regards,
Evelyn

(to reply to me personally, remove 'sox')

Gwen Love - 17 Aug 2005 19:04 GMT
My first meeting was depressing, but I went again----and was so glad I did.
I really learned a lot about what to expect and how other people had
responded to situations that I was facing.  Just bear with the first
meeting; don't give up.  You'll be glad you stuck with it.
Gwen

> I am going to my first meeting on Thursday.  What can I expect?  I
> received an email from the moderator?  group leader?  telling me there
> would be no guest speaker.  Will it be lots of sad stories and crying?
> Will it be so depressing that I will not want to attend future
> meetings??
The Turd Burglar - 18 Aug 2005 22:52 GMT
It's just a bunch of bitties shootin the sh.t.
savvy_sniper - 23 Aug 2005 23:54 GMT
Hi,

I am new here.  BUT i went to my first meeting two weeks ago.  There was no
speaker (there will be next time) and we pretty much went around the table
and told a little about ourselves and our loved ones.  Information was
shared, all kinds of brochures were laid out on a table to browse or take
with you.

BELIEVE ME, it will be good for you EVEN if there is a lot of crying.  There
are people there that are going through or have gone through EXACTLY what
you are!

Good Luck!

Mary
> I am going to my first meeting on Thursday.  What can I expect?  I
> received an email from the moderator?  group leader?  telling me there
> would be no guest speaker.  Will it be lots of sad stories and crying?
> Will it be so depressing that I will not want to attend future
> meetings??
genileuqcaj@aol.com - 24 Aug 2005 05:48 GMT
Question for group:  What is FTD (frontal-temporal dementia, I think it
is)?  At the meeting, myself and one other person are caring for a
parent with AD.  The group leader and the three others there have
parents with FTD.  What is this exactly, and how does it differ from
AD?
Mary_Gordon@tvo.org - 24 Aug 2005 14:31 GMT
Here is some basic info:

http://www.brain.northwestern.edu/mdad/frontal.html

Essentially, its a progressive dementia, and didn't used to be
differentiated from AD by most doctors, but needs to be, since the
drugs used to treat AD can actually make it worse. Frontal lobe
dementia is the name given to any dementia caused by damage to that
part of the brain - a common type is called Pick's disease.

Since the frontal lobe is the part of the brain that governs mood,
behaviour, judgement and self control, you can imagine what the
symptoms look like. Rather than memory issues, the first signs are more
often alterations in personality and behaviour, changes in the way a
person feels and expresses emotion, and loss of judgement.

It often hits people in middle age, who suddenly start behaving in
strange ways - becoming rude and insensitive, uninhibited, obsessive.
They also have language problems early in the game. The personality
changes can really be bewildering - the person seems cognitively
intact, but starts doing socially inappropriate things, like making
rude comments in public, being overtly sexual, playing practical jokes,
being totally uninhibited (scratching, disrobing). They tend to have
language problems early and also tend to put things in their mouth a
lot, and can get into eating obsessively (plus eating strange things).
And...they are often roamers.

So, its a different behaviour profile. They tend not to have the memory
and reasoning problems until later in the game - although the fact that
they SEEM with it can make their strange behaviour really hard to
fathom. They also tend not to have the muscular coordination problems
as early.

In the end, they arrive at the same place as someone with end stage AD.

I think it would be really hard to deal with i.e. your formerly kind
and reasonable 55 year old spouse who SEEMS normal in terms of memory
and mental abilities suddenly starts acting like a jerk, gets fired
from his job for grabbing the secretary and being rude at meetings,
starts drinking and eating obsessively etc.

Its often mistaken for mental illness in the early stages for obvious
reasons.

Mary G.
Songbird - 24 Aug 2005 16:08 GMT
> I think it would be really hard to deal with i.e. your formerly kind
> and reasonable 55 year old spouse who SEEMS normal in terms of memory
> and mental abilities suddenly starts acting like a jerk, gets fired
> from his job for grabbing the secretary and being rude at meetings,
> starts drinking and eating obsessively etc.

We had a well-known case of that locally. A well-respected high school
principal who was unfailingly courteous and respectful to women started
making filthy comments, being abusive to students and actually ended up with
some sexual harassment suits. He was allowed to "retire" early out of
respect to his long and illustrious record. His wife kept saying something
had to be wrong, and it turned out she was right. He was finally diagnosed
with Pick's disease about six months later. It was quite sad for everyone.
Once he was to the point that he was in AL and past personal embarassment,
his family went public with the diagnosis in an effort to have others
understand. He became the AL's most-visited resident, and his funeral three
years later was packed with people who were willing to look past the disease
and remember his legacy.

Songbird
Evelyn Ruut - 24 Aug 2005 16:09 GMT
>> I think it would be really hard to deal with i.e. your formerly kind
>> and reasonable 55 year old spouse who SEEMS normal in terms of memory
[quoted text clipped - 16 lines]
>
> Songbird

Songbird, that is a wonderful story.

My daughter is visiting right now with her family (for my son's wedding
which will be on Sunday) and we were looking through photos of Ida,
remembering the beautifully clean house she had, with all the lovely meals
she made.    It was a good memory, and it refreshed us not to be thinking of
all the sorrows we had when she got sick.

I have always said to those whose loved ones have passed on, that I hoped
their best memories would sustain them.   I need to remember those good
times when she was at her best, myself.   Looking at those old photos was a
good trip down memory lane!

How are things going with your parents?   Did you end up going with them to
their respective medical appointments?

Signature

Best Regards,
Evelyn

(to reply to me personally, remove 'sox')

 
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