Dear List Friends....

I've been following this thread and thinking about it since it began, tho have
made no comments on it till now.  My response is to the LIST, rather than to
any one individual, and if anyone is inadvertently hurt by the response,
please accept my apologies now, as that isn't my intention.

I've had PD for 21 years, have had a unilateral pallidotomy 2 1/2 years ago,
and take a modest amount of Sinemet 25/250, plus a CR 50/200 "chaser" daily.
I'm 54 years old... (establishing credentials to let ya know where I'm coming
from)

I'm not afraid to hear about or discuss death or dying because that's a
natural part of living and ultimately will effect us all no matter how we may
resent it and kick and scream about it on the way out.

I've made myself aware of every nuance of this disease that I could over the
years, no matter how painfully some of the information effected me emotionally
as I found it out.   And believe me, it IS painful... 'case there's eventually
only so long one can deny what may happen in the future 'cause that future has
a way of becoming "now."

I read with compassion and also understanding each List message that comes my
way, yet have found myself loath to do so with this current thread.  This is
*NOT* because I don't believe this forum is the proper place for a caregiver
of family member or even a friend of a person with Parkinson's shouldn't or
can't speak out here - they certainly can, as I see them as much in this venue
as I see others like myself.

HOWEVER... I find it impossible at this point to separate my HUMAN feelings
from my  feelings as a person with PD when reading the posts in this thread,
and the individual with Parkinson's just HATES to read these posts from
caregivers/family members of a Parkie suffering severe dementia,
hallucinations, loss of nearly everything we all need to function as human
beings in a not-particularly sympathetic or understanding society, and just
plain loss of SELF.
And I didn't even mention the stories from those who have felt it necessary to
place a loved one with PD in a hospital for whatever the reason or a nursing
home or other such care facility.   IF any of us on the List was at THAT
point, we wouldn't be capable of posting here or reading these messages.  A
scary future possibility for all, I'd think..

And of course there's that "end-stage Parkinson's," which is usually rarely
mentioned  by the general Parkie community here on the List (but apparently is
subliminally on the minds of many of us). It's rarely mentioned here because
the fear of even THINKING about that, much less reading of it week after week
as viewed by various caregivers/family members who have posted their
experiences in their capacity as caregiver is EXTREMELY FRIGHTENING to many of
us, if not ALL of us.

If a person with PD is at that stage of the disease, they're not capable of
posting HERE.... so we're not exposed to them directly to get input.  Instead,
we see their personal agony thru the eyes of someone else who is also going
thru a personal agony due to PD, tho a different kind than the Parkinson's
patients themselves.

I'm afraid I cannot read this thread and nor do I find it possible to hit the
delete key as I do with the few other topics I'm not interested in.  I cannot
express the suffering I go thru in reading these pain-riddled messages
either... as I ache for us all as well as myself.

This is not an attempt to censor anyone or to stop cold the thread in
question, however, please keep in mind that there IS a caregivers sublist
adjacent to THIS List JUST for the kind of discussion which has been carried
here on the PD List-proper out by the assorted caregivers/family members in
this thread (CAMILLA FLINTERMAN, WHERE AAAAAAAAAAARE YOU?!) <smile>

I strongly urge you to consider moving this conversation to that sublist,
because speaking for myself only, this pain I get when reading this thread is
almost overwhelming at times and even if I don't actually read a new post in
the thread, that "subject" line is enough to remind me about the topic.  I
can't believe I'm the only PWP who feels this way, either.

Again, this is my opinion and feelings only which I'm sharing and no pain was
intentionally meant to be inflicted.

Barb Mallut
[log in to unmask]




















































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From:   Parkinson's Information Exchange on behalf of Naomi Meyer
Sent:   Saturday, March 29, 1997 5:14 AM
To:     Multiple recipients of list PARKINSN
Subject:        The Nursing Home experience

Hello, all.  I've been reading all the communications on the list, but I
haven't written anything for a long time because I've been trying to deal
with the Nursing Home admission of my husband, Dave, since January.   After
he was hospitalized for 2 weeks from a psychotic reaction to zyprexa,  I came
to the conclusion that I could no longer manage at home without help around
the clock.  If he fell, I was unable to pick him up by myself.  I could not
leave him alone at all.  Since I have a job and for various other reasons, my
only solution was the nursing home.  We had more or less expected this --
Dave has had Parkinsons since 1972 -- and knew this might ultimately be where
he would find himself.

I can only tell you it is one of the most painful decisions I have ever made.
 (As Bob Howard will attest).  I had the complete support of my 3 children
and their spouses -- in fact of all my friends and acquaintances,  also --
all of whom told me they don't know how I managed with him as long as I did.
 But as all of YOU know, you just DO!

It's been very painful for both of us; we're BOTH lonely and sad.  But Dave
has improved.  His mobility is better, the hallucinations are benign, his
paranoia is lessened and there is someone around to meet his needs.  I can't
say he's happy, but I feel he is getting good care.  My children and friends
visit him whenever they can and we try to take him out for rides and to
restaurants on occasion.  I know that it was time.

I, too, was confused by someone who referred to "the final stages" of
Parkinsons.  I would like to know what they are.  Since this is a "designer"
disease, as someone said, each patient seems to have different symptoms and
reactions to the medications and deteriorates at a different rate.   Dave
really only began to get worse about five years ago -- after 20 years.

Naomi Meyer, CG Dave 69 /25