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Medical Forum / Diseases and Disorders / Alzheimer's / November 2006

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Charlie - 11 Nov 2006 23:18 GMT
My wife, age 85 was diagnosed with mild AD this week after some recent
memory loss. She has been in reasonably good health. She was referred to a
neurologist who specializes in AD and he came to this conclusion after an
MRI and other tests in his office. He has suggested she enter a three month
group experimental program to test a new drug that is conducted nation wide
and paid for by a pharmaceutical co. quite an involved program and we don't
understand it all yet  but do you have an knowledge as to any benefit to her
regarding her future health.
Alan Meyer - 11 Nov 2006 23:49 GMT
> My wife, age 85 was diagnosed with mild AD this week after some recent memory loss. She
> has been in reasonably good health. She was referred to a neurologist who specializes in
[quoted text clipped - 3 lines]
> we don't understand it all yet  but do you have an knowledge as to any benefit to her
> regarding her future health.

I'm sorry to hear about your wife's problem.  It is difficult
and trying.  Perhaps the fact that she made it to this age
before having real problems is a good thing - indicating
that the disease is advancing only very slowly.

I have no information about the particular clinical trial you
are considering.

I was in a clinical trial for a cancer treatment run by the National
Cancer Institute.  It was a very positive experience in a number
of ways.  One was that I got more pre-treatment testing, and
more time with serious experts, than I would have had in
regular treatment.  I also got very good follow up care.  Three
years later, I still get follow up care from them.

In my particular clinical trial, I thought the people I dealt with
were a cut above the ordinary medical practitioners from the
point of view of understanding the science of my disease.
They were also more thorough in their testing of me because
they had to establish what my disease parameters were as
carefully and accurately as possible in order to know what
effect their treatment had.

Finally, although I didn't know if the treatment would work or
not, I liked the idea that someone would learn something
from my treatment that might help others.

Best of luck to you and your wife.

   Alan
Mary_Gordon@tvo.org - 12 Nov 2006 03:03 GMT
Charlie, if this is a research project, normally these are done as
double blind - so not only will you never know if your wife has had the
new drug (and she may not get anything but a placebo), the researchers
who evaluate her and interact with you will never know whether she got
the drug. If they know, they can be biased when they evaluate her, and
ruin the results of the study.

You join a research project to help future generations, not to help
your loved one - right now, what she CAN benefit from are the drugs and
drug combinations that have already been shown to have some effect.

If it were my spouse, with time so short at 85, I'd go for the sure
thing - I'd ask the doctor for a galantamine-memantine combination
therapy - every day is precious now, and you want to slow this disease
down as possible to keep her with you and herself as long as possible.

Mary
Alan Meyer - 12 Nov 2006 07:29 GMT
> Charlie, if this is a research project, normally these are done as
> double blind - so not only will you never know if your wife has had the
[quoted text clipped - 13 lines]
>
> Mary

Mary

What you say here has much truth to it.  But I'd like to qualify it.

In many studies the participants _do_ find out whether they got the
drug or not - though they will not find out until the evaluations are
complete.  In some studies, if the study shows that the drug is
successful, the patients who received the placebo may have the
option of switching to the real drug at the end of the evaluation
period - getting access to it before it is generally available to
others.

Charlie can ask about this and will be told in advance
whether this will be the case.

In some new drug studies, the number of people getting a placebo
may be less than the number getting the drug.  There may, for
example, be three or four groups - one with placebo and others
with different dosages of the drug.  Charlie can ask about this too
and will be given full information about the assignment of people
to treatments.

In addition, not all studies require that no other drugs be given.
The study may or may not allow patients to take galantamine-
memantine in addition to the experimental treatment.  I was in
a prostate cancer radiation study where patients were allowed,
at their option, to also take androgen deprivation therapy.  Some
studies suggested that ADT contributed to longer survival rates
and the study investigators felt that, in good conscience, they
should not forbid its use.

Finally, although I think it is a good idea to try the drugs you
recommend, it is my understanding that they don't actually slow
the progression of the disease.  What they do is help alleviate
the symptoms, allowing the patient to function at a higher level
in spite of her disease progression.  And they don't work for all
patients.  They are very far from a "sure thing".  So taking those
drugs may or may not give as much benefit as the investigational
drug (though of course the patient might not, as you say, get
the investigational drug.)

Clinical trials are never conducted with secret protocols.  There
is a law in the U.S. that requires total disclosure in great detail
of all of the procedures to be used in the trial.  Charlie can ask
for, and should receive, detailed, written information about the
trial process, and should get good answers to any questions,
including the excellent questions you raise, about the nature of
the trial.

There is a general feeling among the public that clinical trials
researchers are a heartless bunch of scientists who treat
people as laboratory rats, not really interested in what happens
to the patients.

I did not find that to be true in my experience.  Quite the opposite.
I believe that the doctors who treated me were trying their
hardest to cure my cancer.  That was three years ago and,
knocking on wood, I think they may have done it.

   Alan
Evelyn Ruut - 12 Nov 2006 12:33 GMT
>> Charlie, if this is a research project, normally these are done as
>> double blind - so not only will you never know if your wife has had the
[quoted text clipped - 74 lines]
>
>    Alan

Nonetheless Alan, I would still go for the sure thing, rather than take any
chances at all on being the one who isn't getting anything (placebo).

Signature

Best Regards,

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

Alan Meyer - 12 Nov 2006 16:46 GMT
> ...
> Nonetheless Alan, I would still go for the sure thing, rather than take any chances at
> all on being the one who isn't getting anything (placebo).
> ...

I can certainly understand why people would feel that way.
But I would at least ask the clinical trials researchers (they
usually have an 800 number that gets a nurse who is familiar
with the details of the study) whether the patient is allowed
to take Aricept or Memantine while on the study.  It is possible
that they are.

And again, although we can get the "sure thing" in the sense
of being sure we're taking a real drug with Aricept and
Memantine, we don't have a "sure thing" in knowing it will
help.  Some are helped, some aren't.

Yet another option is to get the Aricept or Memantine and try
it for a month.  If it doesn't appear to have any effect, then
go for the clinical trial.

My Dad and my Mother-in-law both took Aricept with no effect
that anyone in the family could perceive.  Both continued to
deteriorate.  In my MIL's case, she had some severe side
effects that forced her off the drug after a month or two.

   Alan
Mary_Gordon@tvo.org - 12 Nov 2006 17:14 GMT
I don't for one second think researchers treat people like lab rats -
however, given that evaluation of cognitive impairments can often have
some subjectivity, particularly over a relatively short time like three
months, the evaluator and the patient shouldn't know the treatment
protocol they are assigned to, and they mustn't be taking other drugs
in this case, or the results are meaningless. This is particularly true
when the drug therapies both available and in develolpment often have
subtle rather than dramatic effects (ie.. when we can't reverse brain
damage, but only support brain function, what does "good" mean?
Incrementally better? Not worse?).

Its hard enough to track changes in a person with early dementia -
after all, are they just having a good week? Are they plateauing? Is it
the other drug therapy rather than the one meant to be trying that is
helping them a bit? Or maybe they had a bad day when they were tested
the first time? Certainly family members are not always able to give a
neutral opinion on how their loved one is - so many families see what
they wish to see, or hope to see.

Double blind in cogntitive drugs isn't cruelty, its protecting the
science for everyone's benefit. Drug trials to deal with dementias
can't be run like drug trials to treat cancer - in those cases youu are
measuring something you can test with physical parameters (i.e. either
the tumour is smaller or it isn't, either the blood levels of a marker
are the same or different).

M.
Alan Meyer - 12 Nov 2006 18:59 GMT
>I don't for one second think researchers treat people like lab rats -
> however, given that evaluation of cognitive impairments can often have
[quoted text clipped - 23 lines]
>
> M.

Well, I can't argue with any of that.  You're probably right that
the patients in the trial will not be allowed to take other drugs -
though it's still worth inquiring.  You're certainly also right that
measuring progress is a whole different kettle of fish from
measuring progress in cancer treatment.

But I would like to bring out one more aspect of this that needs
discussion.  We in this newsgroup frequently lament the dearth
of useful drugs for Alzheimer's disease.  At the same time, we
do our best to discourage patients and caregivers from the
clinical trials that are needed to develop those drugs.

The clinical trial that I was in was conducted over a period of
three years.  The scientists conducting the trial initially hoped
to enroll 30 patients.  Later, they reduced their goal to 18.  In
the end, they never made it.  Interestingly, the treatment seems
to have been successful, but it didn't matter.  Despite the
fact that there were thousands of cancer patients in the
vicinity of Bethesda Maryland, and despite the fact that many
of them were probably destitute and getting minimal publicly
funded care, arguably one of the finest cancer treatment
centers in the world could not recruit 18 of them for outstanding
and totally free treatment.

I don't know whether the treatment I got is a significant improvement
over other treatments or not, but if it is, it's going to take
longer for it to become known and available to the community
at large because the trial was never able to be completed.

In an earlier post you said "with time so short at 85, I'd go for
the sure thing."  I could not make a decision for anyone else
on the same basis as for myself, but I'd like to think that when
my time becomes so short I would be attracted to using that
small remaining amount for the benefit of the people I left
behind.  I would know that, in at least one sense, that would
be the "sure thing".

   Alan
June - 12 Nov 2006 13:53 GMT
Depending on the cause of the dementia, drugs don't always make a
difference.   I saw no change if my mother was taking Aricept or not.   She
knows all her family and grandkids and even remembers the teenage son of one
of my daughter's friends.   Yet she doesn't know the year, how old she is,
who is President, etc.  Just saying there are two sides to the drug thing.
Maybe something new would have helped early on in some way, but after more
than 12 years  she still functions at  this level without drugs for the most
part.  I know she wouldn't have wanted the quality of life that she has now.
Like a 4 or 5 year old.  At least I know she isn't suffering---that's for
the ones who remember who she was ...June

> My wife, age 85 was diagnosed with mild AD this week after some recent
> memory loss. She has been in reasonably good health. She was referred to a
[quoted text clipped - 4 lines]
> and we don't understand it all yet  but do you have an knowledge as to any
> benefit to her regarding her future health.
Charlie - 12 Nov 2006 21:10 GMT
>> My wife, age 85 was diagnosed with mild AD this week after some recent
>> memory loss. She has been in reasonably good health. She was referred to
[quoted text clipped - 4 lines]
>> program and we don't understand it all yet  but do you have an knowledge
>> as to any benefit to her regarding her future health.

Thaks to all for the input, she had pretty much decided not to go for the
program
but I was looking for more info as whether to try to influence her
otherwise.
We are just getting over the shock from last week and I think she is still
in denial
since her friends tell her they don't think she has AD, it is very mild yet
and they don't
see the small signs by being around every day.
She has never been one for details and would just as soon not get involved
as the saying
goes, that is why I'm on the computer and not her. Due to our age we may not
have to
go through it too long. Will check with the Dr. this week and let him know
our decision
and see what he recommends.
Thanks all from sunny Central Ca.
Evelyn Ruut - 12 Nov 2006 22:49 GMT
>>> My wife, age 85 was diagnosed with mild AD this week after some recent
>>> memory loss. She has been in reasonably good health. She was referred to
[quoted text clipped - 22 lines]
> and see what he recommends.
> Thanks all from sunny Central Ca.

Hi,

My mother in law's friends all were in complete denial of her illness, even
when it became so very obvious.   I don't envy your situation right now.
It is all still too fresh in my memory, even though she has been gone for a
year and a half now.   Whatever, do keep in touch here.  It was a godsend to
me to have friends on this newsgroup all through our journey with
alzheimers.

Signature

Best Regards,

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

Mary_Gordon@tvo.org - 13 Nov 2006 23:10 GMT
Evelyn knows, my mother in laws friends and her sister were exactly the
same. My mother in law's personality was intact far into the illness,
and socially, she seemed exactly the same. Her main contact with
friends were visits, and phone conversations, and it was very easy for
her to "fake" her way through a great conversation without actually
imparting any information that could lead to anyone suspecting she was
having trouble with her memory. She was vague and charming, and knew
all the right empty phrases to say (when all else fails, comment about
the weather!!). Her friends would also not realize that she couldn't
use appliances, work the TV, do her shopping, get to appointments, take
care of her domestic chores etc. etc.

Her friends and sister also encouraged her to believe she was fine and
we were nuts, being mean when we insisted she see the doctor. They
collectively believed that it was NORMAL to get forgetful. Her sister
in particular was big on this idea....and we shortly found out why she
had so many good examples to offer her sister - she had AD too
(diagnosed much after Dolli's, but progressed much faster and killed
her sooner).

M.
Alan Meyer - 14 Nov 2006 00:13 GMT
My mother was outstanding at "covering" her illness.  She
had highly developed social skills and they stuck with her
long after her memory and logic skills had seriously deteriorated.

She went to a department store once with my Dad and saw a
help wanted sign.  She applied for the job.  She couldn't fill
out the simple application form and needed help, but in spite
of that she was hired!  My Dad had to intervene to explain to
the store manager that she really couldn't work for him.

   Alan
A R Pickett - 14 Nov 2006 14:29 GMT
Alan wrote - > My mother was outstanding at "covering" her illness.  She
> had highly developed social skills

my father, also, is expert at "masking" his confusion and disorientation.
"Masking" is the term used by the clinic staff at the apt house where he
lives.  He doesn't fool most of the clinic staff for a minute.  A great many
of his friends among the other residents either (1) don't pick up on it or
(2) realize what's going on and accept it.

We think the latter reaction is in part a defense mechanism "If I pretend
it's not happening to Joe, it's not happening (or never will happen) to me."
Also a heavy dose of courtesy, which is not a bad thing.

Not sure about his social skills, which might never have been that highly
developed in the first place.  His inability to adjust his hearing aid, and
its resulting repose in his desk drawer probably has a lot to do with that.

Signature

A R Pickett aka Woodstock

"Sometimes the facts threaten the truth"
Amos Oz, prize winning Israeli author

Read my book reviews at:
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Remove lower case "e" to respond

august - 14 Nov 2006 06:30 GMT
> Thaks to all for the input, she had pretty much decided not to go for the
> program
[quoted text clipped - 13 lines]
> and see what he recommends.
> Thanks all from sunny Central Ca.

It's rare that anyone with dementia thinks they need to see a Dr for
anything. The only time our LO mentioned she might need to see a Dr was
after her appendix had burst. Small things like a back ache or UTinfection
or anything else are always "cured" by the same thing - her crawling into
bed and waiting for us to figure out what the real problem is.

Because many of the AD drugs can cause nausea and loss of appetite you will
need to weigh the negatives vs potential benefits. Sometimes they don't add
up to being a good choice. There are just not any simple answers when
dealing with AD.   good luck with your journey,    AW
Evelyn Ruut - 14 Nov 2006 11:12 GMT
>> Thaks to all for the input, she had pretty much decided not to go for the
>> program
[quoted text clipped - 24 lines]
> don't add up to being a good choice. There are just not any simple answers
> when dealing with AD.   good luck with your journey,    AW

Our experience mirrors your own, when it came to any discomfort of any kind.
(the creeping into bed and waiting for us to figure it out).   The only
thing different for us, was that we noticed a marked improvement in her
level of cognition, with drugs.   Without them she was nearly a vegetable.
We did always make sure she took her Aricept after dinner though, to
minimize any gastro-intestinal stuff.

Signature

Best Regards,

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

Chuck Whealton - 23 Nov 2006 19:43 GMT
> Depending on the cause of the dementia, drugs don't always make a
> difference.   I saw no change if my mother was taking Aricept or not.   She
[quoted text clipped - 15 lines]
> > and we don't understand it all yet  but do you have an knowledge as to any
> > benefit to her regarding her future health.

June, my Mother also saw no benefit with Aricept, or Excelon.  It was
believed that her dementia was due to a series of mini-strokes.
However, she did see a major benefit with Xyprexa.  If it wasn't for
that drug, we would have had a lot less time with her.  I know there
have been some recent items in the news about Xyprexa.  All I can say
is that it helped us greatly.

Charles R. Whealton
Charles Whealton @ pleasedontspam.com
June - 24 Nov 2006 02:57 GMT
What kind of benefit?   No offense  Chuck and I know you mean well, but my
mother has had dementia since the fall of '93.   Unless a medication can
reverse it, I see no reason for drugs.  We think the mini strokes may be the
problem but it really doesn't matter now.   She's not psychotic, she has a
very sweet disposition.  She's 87 and her mind is slowly leaving her.
Extend her life?   To what end?  Extend her life until something more
catastrophic takes  her?  Dementia has taken her mind, her personality, and
literally everything she was.  I'm sorry to sound harsh but am I missing
something here?   Since I was a kid, my mother always made it clear not to
prolong any incurable illness she might face and I respect that.
Ok after thinking it over, I thought I should delete this and not post it,
but I can't believe I'm the only one who feels this way....June

P.S.  My 5 year old grandson asked me why old people become babies again and
I had no answer.

> June, my Mother also saw no benefit with Aricept, or Excelon.  It was
> believed that her dementia was due to a series of mini-strokes.
[quoted text clipped - 5 lines]
> Charles R. Whealton
> Charles Whealton @ pleasedontspam.com
Chuck Whealton - 24 Nov 2006 03:33 GMT
> What kind of benefit?   No offense  Chuck and I know you mean well, but my
> mother has had dementia since the fall of '93.   Unless a medication can
[quoted text clipped - 21 lines]
> > Charles R. Whealton
> > Charles Whealton @ pleasedontspam.com

Actually June, I was simply agreeing with you that pharmaceuticals
DON'T do it for everybody and that certain pharmaceuticals that help
some may provide no benefit for others.  It was for the benefit of the
new poster (Charlie?) who was asking for information.

As for your Mother's conditiion, if she's got a nice disposition, then
you're very lucky.  Whereas I do not like to go into specifics about
how my Mother was towards the end, I will say she didn't have a nice
disposition and I was about to throw the towel in.  Both Aricept and
Excelon made her ill and Excelon with another well known anti-psychotic
made the condition worse.  Excelon and that other anti-psychhotic were
what my Mother was on when I was just about to give up.

Xyprexa had the opposite effect and helped us out greatly.

I wasn't saying you should put your Mother on anything.  You're very
lucky that she's got a decent disposition.  That's a long time for a
person to suffer from dementia, let alone still be responsive.

My Aunt was diagnosed with alzheimers (months after my Mother died) and
was dead within two years after my Mother died.  Her husband, who began
going down the tubes at the same time (pics disease?), didn't last much
longer....

Charles R. Whealton
Charles Whealton @ pleasedontspam.com
June - 24 Nov 2006 03:56 GMT
I can see the necessity of medication if it helps deal with psychosis and I
realize that happens more often than not.  Mom's just different.   About all
drugs make her sick and I'm so glad it's not necessary.   I guess I got
carried away on my soapbox......June

>> Actually June, I was simply agreeing with you that pharmaceuticals
> DON'T do it for everybody and that certain pharmaceuticals that help
[quoted text clipped - 22 lines]
> Charles R. Whealton
> Charles Whealton @ pleasedontspam.com
Chuck Whealton - 24 Nov 2006 04:33 GMT
> I can see the necessity of medication if it helps deal with psychosis and I
> realize that happens more often than not.  Mom's just different.   About all
[quoted text clipped - 27 lines]
> > Charles R. Whealton
> > Charles Whealton @ pleasedontspam.com

June, if you can ever say "lucky" and "dementia" in one sentence, it
seems like you've been reasonably lucky.  I've never encountered
anybody who's had a loved one that's suffered from dementia that long,
let alone with the person still in a somewhat managable state.

I hope it continues to work at least that well for you and your
Mother...

Charles R. Whealton
Charles Whealton @ pleasedontspam.com
Evelyn Ruut - 24 Nov 2006 12:20 GMT
>I can see the necessity of medication if it helps deal with psychosis and I
>realize that happens more often than not.  Mom's just different.   About
>all drugs make her sick and I'm so glad it's not necessary.   I guess I got
>carried away on my soapbox......June

June, every situation is different, and I am so glad for you and your mom
that she doesn't need any meds.   My mother in law would have been in a
nursing home a lot sooner if it were not for drugs.  They kept her calm and
acting more "sane" for a long time, allowing her a better quality of life
for her last few years.   We tried lots of different things, but the best
quality of life for her was with the meds.   She was deeply depressed and
Zoloft helped that a lot.   Then when she began having disturbing delusions
the doc put her on Risperdol, which calmed her reaction to the delusions.
As her illness progressed the meds were actually reduced.

Signature

Best Regards,

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

Tumbleweed - 24 Nov 2006 09:34 GMT
> What kind of benefit?   No offense  Chuck and I know you mean well, but my
> mother has had dementia since the fall of '93.   Unless a medication can
> reverse it, I see no reason for drugs.

How about the extra 2 or so years (I estimate) that my father had of
reasonable quality life at home, compared to being *in* a home? How about
the much easier life my mother had for those 2 years, compared to dealing
with a much more difficult person?

FWIW we are *all* suffering from an incurable 'disease' , its called life
and most of us try and prolong it! Some at all costs,and some only while the
quality is whatever we would deem acceptable, but I think you have maybe
missed the point that these drugs *can* (nothing is guaranteed) add extra
years of quality life which benefits both the sufferer and the carer.

Signature

Tumbleweed

email replies not necessary but to contact use;
tumbleweednews at hotmail dot com

Evelyn Ruut - 24 Nov 2006 12:22 GMT
>> What kind of benefit?   No offense  Chuck and I know you mean well, but
>> my mother has had dementia since the fall of '93.   Unless a medication
[quoted text clipped - 11 lines]
> extra years of quality life which benefits both the sufferer and the
> carer.

I stand with you on this Tumbleweed.   My mother in law would have been in a
nursing home shortly after diagnosis had it not been for the medication,
which did indeed give her a nearly "normal" life for a few more years.   I
have NO idea how we would have coped with her awful delusions otherwise.

Signature

Best Regards,

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

 
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