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Reply to message from [log in to unmask] of Sat, 29 Mar
>
>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]
>
Dear Barb,
I too feel the same way. Thank you for writing this letter. I have MSA and
>38 yrs. old. I understand the pli8ght of caring for a loved one who is
seriously ill and then dying, and I try to understand that the caregivers
have a need to address their fears and concerns. I don't understand why
SOMETIMES the ill person can't have a home health aide. However, that is just
my own thought. Anyway ......Again thank you for writing this letter. I
appreciate it. I too hope this added support for Barb's letter is not
taken offensively.
Sincerely,
Nancy M.
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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
>
>
--
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2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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