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#57 From: "Heather Mingo" <heatherv@...>
Date: Wed May 11, 2005 5:36 pm
Subject: chat
heatherveld
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I sure hope I'm home this Friday evening and can remember to tune in.
I've been trying for months now with no luck.  I'm either away or
totally forget.  I'm a member of the PLWP main chat room as well but
feel like an interloper there sometimes since I'm not the one
suffering from PD.  Well, of course I suffer from it, just as all of
you do.  But you know what I mean.  I really want to connect with
others who are caring for a PD patient.

I'll tie a string around my finger!

Heather

#56 From: Virginia Fay <aussiebella@...>
Date: Tue May 10, 2005 10:59 pm
Subject: Re: [CarePartners] Hello everyone
aussiebella
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Hello Aynor and welcome.
We look forward to chatting to you. We have a meeting every week at
6.30pm-7.30pm Easten USA time on friday nights for them. I realize that this
will be not much good for you, as it is  very late in your night, but maybe we
can see you then.
Hope all is going well for you, for you Dad and your families.
All the best
Bella



aynor35 <aynor35@...> wrote:
Hi for all!
I am new in this group. I have my father suffering from pd / MSA. He
was diagnosed in 2002 and his condition is pretty bad already...He
cant move or talk anymore properly. I am livingh with my father and
his family. He has a young wife and 2 small children also. We live
together with my family also. I have a husband and a son also. Because
of my father I started studuing nursing to be able to take better care
of him hopefully. We live in finland. I am happy to find a group and
hopefully to be able to share some methods of treatment.
Bye for now and hope to talk to some of you in the chat room?




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#55 From: "aynor35" <aynor35@...>
Date: Tue May 10, 2005 10:54 pm
Subject: Hello everyone
aynor35
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Hi for all!
I am new in this group. I have my father suffering from pd / MSA. He
was diagnosed in 2002 and his condition is pretty bad already...He
cant move or talk anymore properly. I am livingh with my father and
his family. He has a young wife and 2 small children also. We live
together with my family also. I have a husband and a son also. Because
of my father I started studuing nursing to be able to take better care
of him hopefully. We live in finland. I am happy to find a group and
hopefully to be able to share some methods of treatment.
Bye for now and hope to talk to some of you in the chat room?

#54 From: Virginia Fay <aussiebella@...>
Date: Mon May 9, 2005 12:18 pm
Subject: Re: [CarePartners] Re: Carepartner Chat
aussiebella
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Cool Bananas
The "Cavalry has arrived"!!
Go you good things..Nan & Bren!
We are still here!



btucma2000 <no_reply@yahoogroups.com> wrote:
Yo there you two.  How the heck are you?  We thrilled you are
getting inquiries about the chatroom.  We will definitely put you
back on the "radar screen."  Nan and I do an "Update" to the
members..we'll include your chatroom in the next one.

Love to Fabs and Chosh!
Bren

--- In carepartners@yahoogroups.com, "bella" <aussiebella@y...>
wrote:
> There has been an upsurge of interest in us all getting together.
That
> being the case, we have changed the times to 6.30pm EDST Friday
nights
> for regular chats. If people are interested at other times, feel
free
> to try it whenever, and maybe let us know so we can pop by  if
> available.
> Cheers to all
> Bella & Chris (Hall)
>
> I need also to ask Brenda to put us back on the MAP in PLWP so
people
> can find us. Chris and I looked everywhere to-night to find the
lead.
> Woe we have been inadvertantly I am sure, dropped from the radar
> screen!




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#53 From: btucma2000
Date: Mon May 9, 2005 12:49 am
Subject: Re: Carepartner Chat
btucma2000
Offline Offline
 
Yo there you two.  How the heck are you?  We thrilled you are
getting inquiries about the chatroom.  We will definitely put you
back on the "radar screen."  Nan and I do an "Update" to the
members..we'll include your chatroom in the next one.

Love to Fabs and Chosh!
Bren

--- In carepartners@yahoogroups.com, "bella" <aussiebella@y...>
wrote:
> There has been an upsurge of interest in us all getting together.
That
> being the case, we have changed the times to 6.30pm EDST Friday
nights
> for regular chats. If people are interested at other times, feel
free
> to try it whenever, and maybe let us know so we can pop by  if
> available.
> Cheers to all
> Bella & Chris (Hall)
>
> I need also to ask Brenda to put us back on the MAP in PLWP so
people
> can find us. Chris and I looked everywhere to-night to find the
lead.
> Woe we have been inadvertantly I am sure, dropped from the radar
> screen!

#52 From: "bella" <aussiebella@...>
Date: Fri May 6, 2005 11:21 pm
Subject: Carepartner Chat
aussiebella
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There has been an upsurge of interest in us all getting together. That
being the case, we have changed the times to 6.30pm EDST Friday nights
for regular chats. If people are interested at other times, feel free
to try it whenever, and maybe let us know so we can pop by  if
available.
Cheers to all
Bella & Chris (Hall)

I need also to ask Brenda to put us back on the MAP in PLWP so people
can find us. Chris and I looked everywhere to-night to find the lead.
Woe we have been inadvertantly I am sure, dropped from the radar
screen!

#51 From: Virginia Fay <aussiebella@...>
Date: Sun Apr 10, 2005 1:51 am
Subject: RE: [CarePartners] Digest Number 17
aussiebella
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Yepper...it's all there for anyone to read!

It's tough going around here Heather at the moment. The old "3 steps backwards
and later two steps forward" plan it running out of forward steps. LOL

Hang in! We're in Year 22 with PD here, and hell I am only 56 (just)!
How are you doing?



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#50 From: "Heather" <heatherv@...>
Date: Sat Apr 9, 2005 10:46 pm
Subject: RE: [CarePartners] Digest Number 17
heatherveld
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If you reply to this email rather than go to the web site, is this message
posted?

Hi Bella.  How is your battle going?

Heather

-----Original Message-----
From: carepartners@yahoogroups.com [mailto:carepartners@yahoogroups.com]
Sent: Saturday, April 09, 2005 11:55 AM
To: carepartners@yahoogroups.com
Subject: [CarePartners] Digest Number 17




There is 1 message in this issue.

Topics in this digest:

       1. Re: Is anyone there?
            From: Virginia Fay <aussiebella@...>


________________________________________________________________________
________________________________________________________________________

Message: 1
    Date: Fri, 8 Apr 2005 17:27:20 -0700 (PDT)
    From: Virginia Fay <aussiebella@...>
Subject: Re: Is anyone there?

Yo
I am still here.
It would appear we have all been "just poking along"
Nice to hear from someone..
Cheers
Bella

Heather Mingo <heatherv@...> wrote:

I haven't been checking this web site lately but it seems there has
been no activity at all for several months.  Anyone there?

Heather





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#49 From: Virginia Fay <aussiebella@...>
Date: Sat Apr 9, 2005 12:27 am
Subject: Re: [CarePartners] Is anyone there?
aussiebella
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Yo
I am still here.
It would appear we have all been "just poking along"
Nice to hear from someone..
Cheers
Bella

Heather Mingo <heatherv@...> wrote:

I haven't been checking this web site lately but it seems there has
been no activity at all for several months.  Anyone there?

Heather





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#48 From: "Heather Mingo" <heatherv@...>
Date: Thu Apr 7, 2005 9:22 pm
Subject: Is anyone there?
heatherveld
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I haven't been checking this web site lately but it seems there has
been no activity at all for several months.  Anyone there?

Heather

#47 From: "Randy" <mrbentley2@...>
Date: Sun Jan 23, 2005 3:52 pm
Subject: Need y'all - BAD!
mrbentley2
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Hi, all!  My partner was diagnosed with a "Parkinsonism" nearly 3
years ago and I've been taking care of him ever since.  He got
WRETCHED healthcare where we used to live (St. Louis, MO - moved to
New Orleans June of '04) and the care here seems to be better.
There is, of course, room for improvement.  Anyway, as a caregiver
I've been dealing with feelings that I know many of y'all have been
coping with and I'll be very anxious to share.  There's a lot I need
to know - I've been pretty much blind for nearly 3 years.  I've
started a Yahoo Group for Parkinson's in and around New Orleans and
you all are welcome to join us there, too, @
http://health.groups.yahoo.com/group/ParkinsonsNOLA/  Right now I'm
working with Touro Hospital to beef up attendance at their support
group so if any of you are coming to New Orleans (or know anyone who
is) come see us.

Meanwhile, THANK YOU for being here!!!!!!

Randy

#46 From: "Laura Navoy" <lnavoy@...>
Date: Wed Nov 10, 2004 11:00 pm
Subject: Re: [CarePartners] Here I am
thpyke11
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Hello. first let me tell you that I don't have very much experience with PD meds
etc.  I take mirapex and stalevo and don't seem to have too much trouble but I
am only 49 years young.
My husband passed away back in 1998 so I have some understanding of what you are
experiencing as a caregiver.
Frankly, for me, I give all the credit to God for giving me the "peace that
passes understanding" during some of the most challenging moments of my life.  I
know with all my heart that he loves you just as much as me. I know that you can
do anything if you have Christ in you to give you strength.

I don't want to be too forward as people can be resistant to hearing spiritual
things.

I hope someone medically astute can help to give you some insight in the
physical realm. I think you are doing a great job in this situation. It's good
to do research etc.

I know your time is valuable, but reply to me please and let me know where you
are spiritually.

I'll be praying for you and your Father in law, ok?
   ----- Original Message -----
   From: imajoys1093004
   To: carepartners@yahoogroups.com
   Sent: Wednesday, November 10, 2004 1:18 PM
   Subject: [CarePartners] Here I am



   Hello all.  I am new to this group today.  I suppose what I am
   looking for is support and information.  I will try to be as concise
   as I can.  My father-in-law was diagnosed with PD in 1995.  He had
   back surgery last year around Thanksgiving and his meds were changed
   because of water retention from eldypryl and mirapex to sinement
   (sp).  With in 2 weeks of the change, his posture completly doubled
   over so if you see him standing he is almost at a 45 degree angle.
   He also experienced debilitating cramps down his calves and in his
   hips and lost considerable mobility.  I have researched this and it
   seems to be dystonia.  We saw almost no PD symptoms while he was
   medicated before the med change and I understand sinement can do
   this.  Of course the doctors have no answers.  We are managing his
   cramps with stalevo and requip but he currently has severe pain in
   his hips.  He moved in with us 2 months ago and we are all doing
   fine, but I am finding it difficult not to treat him like a child,
   something I said I would never do.  I have been his primary caregiver
   and find there is no time for anything else.  Has anyone else had any
   of these problems?  He has also been diagnosed with Prostate cancer
   which is contained and being managed with hormone therapy.  He
   doesn't like the pain meds that make him feel "dopey", but tylenol
   doesn't manage the pain very well.  Any info or suggestions would be
   greatly appreciated.

   Thanks for being here,

   JoyS




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#45 From: "imajoys1093004" <imajoys1@...>
Date: Wed Nov 10, 2004 7:18 pm
Subject: Here I am
imajoys1093004
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Hello all.  I am new to this group today.  I suppose what I am
looking for is support and information.  I will try to be as concise
as I can.  My father-in-law was diagnosed with PD in 1995.  He had
back surgery last year around Thanksgiving and his meds were changed
because of water retention from eldypryl and mirapex to sinement
(sp).  With in 2 weeks of the change, his posture completly doubled
over so if you see him standing he is almost at a 45 degree angle.
He also experienced debilitating cramps down his calves and in his
hips and lost considerable mobility.  I have researched this and it
seems to be dystonia.  We saw almost no PD symptoms while he was
medicated before the med change and I understand sinement can do
this.  Of course the doctors have no answers.  We are managing his
cramps with stalevo and requip but he currently has severe pain in
his hips.  He moved in with us 2 months ago and we are all doing
fine, but I am finding it difficult not to treat him like a child,
something I said I would never do.  I have been his primary caregiver
and find there is no time for anything else.  Has anyone else had any
of these problems?  He has also been diagnosed with Prostate cancer
which is contained and being managed with hormone therapy.  He
doesn't like the pain meds that make him feel "dopey", but tylenol
doesn't manage the pain very well.  Any info or suggestions would be
greatly appreciated.

Thanks for being here,

JoyS

#33 From: "bella" <aussiebella@...>
Date: Sat Dec 20, 2003 9:42 pm
Subject: Carepartners Christmas Eve Carols
aussiebella
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Hello to you all and Holiday Greetings.
There has been some confusion about "OUR ROOM", and I finally
figured it out!
We have two Carepartner Rooms. Only problem is, only one is linked
to PLWP and it is'nt this one! OUCH
So, for the sake of simplicity I am going to suggest we move to
the "main board", the big time, the "Tra La Tra Lee", and get
assimilated there, in our rightful home, and below is the link. In
the meantime I shall speak to the big Kahunas in PLWP as see why we
cannt have this one linked too, as Carl Mc Leod "invented this room"
for us, and I dont want to lose it. In the meantime we could all use
it to sneak away and whisper where no one can find us, if or
whenever a need arose.

http://health.groups.yahoo.com/group/PLWPcares/

Heck, if PWP can PLWP 1 and 2, then why cannt we have PLWP
Carepartners and PLWP Cares?

Look forward to seeing as many as possible with their families for
Christmas Eve Carols in PLWP2 Chat room, at 7.30 pm Easten.
Link for that:

http://health.groups.yahoo.com/group/plwp2/

In the meantime I take this opportunity to wish everyone a Merry
Christmas, and Holiday Greetings, and a very Happy New Year.
With Best wishes
Virginia Fay
AKA Bella

#32 From: shannon capehart <laney72704@...>
Date: Tue Dec 16, 2003 11:54 pm
Subject: Re: [CarePartners] Hello everyone!
laney72704
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Hello Woody! Toad says hello as well. I just want to say that I feel it is a
privelege to be able to give back to the man who gave so much to me.  I
am a recovering addict ( I've been clean for a year now) and I caused my
parents, my children, and everyone who ever cared for me a lot of grief and
heartache.  God has blessed me with a second chance and so has my
father. I don't intend to waste it.  If you ever need a shoulder, a friend, or
just a good laugh...please feel free to write.  God Bless,  Laney

Woody Hatfield <curmudgeon@...> wrote:
Hey!  My name is Woody and I was diagnosed with PD in '98.  My wife of 45 years
has been my "care-giver" and I, quite frankly, couldn't funtion without
her....PD or no PD.  I look forward to receiving Toad's writings and am
impressed with his talents.  I spent a lifetime in the advertising business and
thus am able to recognise talents in the journalism field.  If I may be selfish
for a moment.......please do every thing that you can to keep your Dad happy and
at his keyboard !
Please feel free to write to me and unload any frustrations that you might have.
I will do my best to help.  Mind you, I don't take too many things seriously so
I might poke fun at times.  If things get to complicated, send me an SOS with
your phone # and I'll call you back that evening or week-end when my cell-phone
is on the "free " time.  I'm 72, and retired and am at home most of the time.
Kindest Regards,
Woody Hatfield
                                                                                                                                     
----- Original Message -----
   From: shannon capehart
   To: carepartners@yahoogroups.com
   Sent: Tuesday, December 16, 2003 8:04 AM
   Subject: [CarePartners] Hello everyone!


   Hi! My name is Shannon aka Laney. I am Toad's daughter, and I am a
   caregiver.  My father was diagnosed with PD in '92.  I am looking forward
   to giving and receiving support to all of you.  If you'd like to write me
please
   feel free.  Gotta go.

   God Bless,

   Laney


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#31 From: "Woody Hatfield" <curmudgeon@...>
Date: Tue Dec 16, 2003 3:01 pm
Subject: Re: [CarePartners] Hello everyone!
hohatfield
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Hey!  My name is Woody and I was diagnosed with PD in '98.  My wife of 45 years
has been my "care-giver" and I, quite frankly, couldn't funtion without
her....PD or no PD.  I look forward to receiving Toad's writings and am
impressed with his talents.  I spent a lifetime in the advertising business and
thus am able to recognise talents in the journalism field.  If I may be selfish
for a moment.......please do every thing that you can to keep your Dad happy and
at his keyboard !
Please feel free to write to me and unload any frustrations that you might have.
I will do my best to help.  Mind you, I don't take too many things seriously so
I might poke fun at times.  If things get to complicated, send me an SOS with
your phone # and I'll call you back that evening or week-end when my cell-phone
is on the "free " time.  I'm 72, and retired and am at home most of the time.
Kindest Regards,
Woody Hatfield
                                                                                                                                     
----- Original Message -----
   From: shannon capehart
   To: carepartners@yahoogroups.com
   Sent: Tuesday, December 16, 2003 8:04 AM
   Subject: [CarePartners] Hello everyone!


   Hi! My name is Shannon aka Laney. I am Toad's daughter, and I am a
   caregiver.  My father was diagnosed with PD in '92.  I am looking forward
   to giving and receiving support to all of you.  If you'd like to write me
please
   feel free.  Gotta go.

   God Bless,

   Laney


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#30 From: shannon capehart <laney72704@...>
Date: Tue Dec 16, 2003 2:04 pm
Subject: Hello everyone!
laney72704
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Send Email Send Email
 
Hi! My name is Shannon aka Laney. I am Toad's daughter, and I am a
caregiver.  My father was diagnosed with PD in '92.  I am looking forward
to giving and receiving support to all of you.  If you'd like to write me please
feel free.  Gotta go.

God Bless,

Laney


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#28 From: "drolleri12" <drolleri12@...>
Date: Thu Sep 11, 2003 5:00 pm
Subject: Hi I am new here, w/mom having PD
drolleri12
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I hope that I am in the right chat room.  I just recently signed on
here.  My mother has PD.  She was diagnosed with it about 12 years
ago.  Since then she has been coping, dealing with her discomforts
and changes of doing her activities.  We, the family were called on
December 6, 2002 that my mother had been in an automobile accident.
She received a brain injury from the accident.  She has been to Sunny
View for rehabilatation, to my brothers house, and then with set
backs and returned back into the hospital.  Since then she then was
sent for a couple of months to Kingston, NY Brain rehabilitation
center.  She has gone thru her physical therapies there and now is
residing in Catskill, NY at the Pavilion, Assisted Living.  My mother
just turned 59 years old in April of this year.  I just wish that
there was more help out there to help her.  Now with the brain injury
and her PD had progressed more since the injury it has been quite a
difficult and sad period for her and all of us in the family.  We
just keep positive and encouragement for my mom.  The problem we are
having is that between other health problems, the physicians seem to
keep going back on the brain injury, but also her Neurologist claims
that this brain injury progessed her PD.  The assisted living is a
very warm and nice place, but I feel she would be better off with
others whom have PD to understand her disease better.  It is more
difficult for her to walk with her head tilted to the side, and she
does have a sence of humor when she ask me to tell her if she is
walking a little tilted, with her head tilted!  She will laugh about
it...and then she may cry too.  I hope this was not too much
information to send in or hoping I may hear from someone out there
would be nice.  I would just love to see my mom in a different
setting.  Thank you.

#27 From: Virginia Fay <aussiebella@...>
Date: Tue Sep 9, 2003 9:44 pm
Subject: Re: [CarePartners] Question about the chatroom time?
aussiebella
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Hello Nargis
Thanks for your enquiry! There are several sites we use for carepartners chats,
but we usually find now it is easier to meet in Yahoo Messenger, then go to
whichever room appears to be working.
Please join us..the time is 7.30 PM eastern US time, and as you are in Cal..and
I am in Australia, out times are grossly different, ie your time would be I
assume, 4.30pm Friday.(whilst mine is 9.30am saturday morning).
Please look for oshticker or aussiebella in Yahoo messenger, as Chris and I are
the two constants for carepartner chat. You would be most welcome.
Look forward to meeting you
Cheers
Bella


stabertoe <oothappam@...> wrote:
Hi all. I just joined this group. The statement says: ' Right now, we
have a regular chat session every Friday night at 730PMEDT. Always
check right here to see if that's changed or if we've added other
times.

My question..what is MEDT??  I have heard of Eastern time, Central
time, Pacific time, but what's medt? I am in California, by the way.

I am looking after my 80 yr old father who has been diagnosed with
Parkinson's 10 yrs ago. I don't think he will be with us much longer,
he is really so bad off now. Our hearts are breaking.
I am hoping to learn from others who are also looking after someone
with PD...any tips, any ideas..anything.
Nargis




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#26 From: "stabertoe" <oothappam@...>
Date: Tue Sep 9, 2003 4:38 pm
Subject: Question about the chatroom time?
stabertoe
Offline Offline
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Hi all. I just joined this group. The statement says: ' Right now, we
have a regular chat session every Friday night at 730PMEDT. Always
check right here to see if that's changed or if we've added other
times.

My question..what is MEDT??  I have heard of Eastern time, Central
time, Pacific time, but what's medt? I am in California, by the way.

I am looking after my 80 yr old father who has been diagnosed with
Parkinson's 10 yrs ago. I don't think he will be with us much longer,
he is really so bad off now. Our hearts are breaking.
I am hoping to learn from others who are also looking after someone
with PD...any tips, any ideas..anything.
Nargis

#25 From: btucma2000
Date: Thu Mar 27, 2003 7:10 pm
Subject: All PLWP Members
btucma2000
Offline Offline
 
I have a favor to ask of each of you ... and no, I'm not asking for
money nor am I asking you to shed blood for PLWP! LOL (Though I
really believe many of you would consider doing it!)
No, what I'm asking is for you to join the Yahoo Group PLWP2
www.groups.yahoo.com/group/plwp2 as soon as you possibly can. Why,
you ask? Well because it will make mine and Nan's life so much
easier.

How,you ask? Well, Nan and I have struggled with doing mass emails
now for a very long time. We need to be able to communicate with
everyone and sometimes it's crucial that we get to you in a
hurry...for instance something about advocacy or one of our members
needs help, etc. It normally takes about 2 hours to do a mass email
to you folks and then many of those are returned for various reasons.
The account has been closed, the mail capacity has been reached and
you can receive no more mail, etc.

By utilizing Yahoo Group, it doesn't take us any longer to send
hundreds of emails than it does to send one. Nan and I don't have to
keep up with each address, it's totally up to you to keep it up to
date.

Let me tell you how Yahoo does it. When anyone posts to the Message
Board on Yahoo, it automatically emails all of the members. You, the
member controls whether or not you receive the email. In your member
setup, there are several choices you can make...instead of me writing
them all down, check out the "How do I?" at
http://www.plwp.org/how_to.htm#Messages . You can change your member
set up at any time.

So, those of you who already have a login with PLWP2, you may want to
double check your email address to make sure it's correct. (There's
an option on the front page that will allow you to change your setup.
Be sure to read it carefully.) For those of you who have not joined
PLWP2, please do so without hesitation. If everyone is cooperative
and takes care of this immediately, Nan and I will completely do away
with our old system and go for Yahoo. Remember, this is a
democracy ... majority rules.

There's other benefits to using Yahoo...the board can be used for
sharing, communicating, getting help and/or giving help as well as so
many other uses. Think of it as somewhere between a chatroom and a
forum like on MGH. The thing that makes it so great is the time
factor...when the post is entered on the group site it's
automatically sent to the membership, the total interaction on PLWP
at Yahoo groups is dependent solely one the member. YOU ARE IN
CONTROL!

So please make sure you are an active member of plwp2, that your
email address is correct and that you have the appropriote settings
for what you want to do. I think we'll all be amazed at the
convenience thus the increased commoradory of the entire membership.

Nan and I really thank you for doing this. You've probably just added
another 5 years to my life line. LOL.... There's more I want to say
here but we'll have a better method when we get this job done.

Thank you! Thank you! Thank you!
Bren and Nan

#24 From: btucma2000
Date: Fri Mar 14, 2003 6:33 pm
Subject: Special Forum
btucma2000
Offline Offline
 
There's so much confusion, so many questions...such an important time
in the cure of neurological diseases.  We have created a special
forum for discussing stem cells, therapeutic cloning etc.  Our own
Joan Snyder (Jes) was the first to post and it makes for very good
reading...very enlightening...very thought provoking.  Just go to the
frontpage at www.plwp.org ... the menu option is to the left directly
under Communication Center.  You will also see a link to Portraits of
Hope.

Remember one thing when approaching these and other issues.  The only
dumb question is the unasked question.  I know I feel extremely dumb
most of the time BUT as my mentor of 35 years ago told me (and it
changed my life)...intelligence is not knowing the answers but
knowing where to go to find the answers.  And though these are
sensitive issues, we feel we need to discuss them openly among the
PLWP community.  Please join in.

Together we make a difference,
Nan and Bren

#23 From: btucma2000
Date: Sat Mar 8, 2003 6:38 pm
Subject: Parkinson's Unity Walk
btucma2000
Offline Offline
 
Jane Stengel who is Co-Director of PLWP's Events Team is going to set
up a PLWP Team with the Parkinson's Unity Walk. The walk is scheduled
for April 26, 2003 in Central Park, NYC. If you are interested in
going to the walk, she will be happy to help you with your
arrangements. She can suggest hotels, etc.
          We support the Unity Walk and have attended as a group since
1999. This year we're asking that you support the PLWP Team by
sponsoring Jane Stengel who is representing PLWP.  Donate directly to
the Parkinson's Unity Walk Organization  HERE.  If you plan to go to
the walk and want to register yourself, there's a link on Jane's
Donation Page that will take you directly to the PLWP Registration
form.

Together we make a difference!
Nan and Bren

#22 From: aussiebella
Date: Wed Mar 5, 2003 8:49 am
Subject: CAREPARTNERS CHAT
aussiebella
Offline Offline
 
Hi all we shall once again try using the PLWP website for our Friday
Evening Chat Fest.
Anyone who would like to join in..just come to PLWP Communication
Centre on PLWP Main Page..and hit Carepartner Chat.

All are welcome, including any PWP who would care to come and cheer
us along.

We have also been approached by CHY (the radio guy) to HOST and on-
line Web Radio segment, for carepartners and other interested folk to
enjoy the banter and camradiere, as well as support we give each
other.
Stay tuned as they say!!

#15 From: aussiebella
Date: Mon Aug 21, 2000 8:35 am
Subject: Re: how do you deal?
aussiebella
Send Email Send Email
 
Tough call Catluv....not one I have really had to
cope with. Single minded Type A personality types
apparently are a majority in PWP profiles.<br>I will only
suggest that in dealling with such personalities, my
experience is to suggest rather than demand or order, seems
to be more effective. In fact make him believe that
the idea was his in the first place??? LOL
ouch...Talk about the pot calling the kettle black..sorry
Cat..but as a typical Type A myself..that's all I can
suggest!

#14 From: catluvv
Date: Sun Aug 20, 2000 3:27 pm
Subject: how do you deal?
catluvv
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Hi. One of the great frustrations that I have as
the daughter of someone with PD, is how you deal when
your loved one doesn't do something that is medically
advised. For example, my father is supposed to double
swallow when he eats and periodcially cough to remove the
possibility of aspiration. However, when he is reminded
(particularly by my poor mother) he sometimes becomes annoyed
at the person doing the reminding. I wonder if he
realizes that he is not the only one living with the
consequences of PD. I'm sure that it is frustrating for him,
but it is also frustrating for us-how do you all
deal?

#13 From: becky_douget
Date: Sat Aug 5, 2000 9:49 am
Subject: Prayers needed.
becky_douget
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Just to let the board know, jdpaul's husband died Aug. 2nd.  Prayers need.

#12 From: aussiebella
Date: Wed Jul 5, 2000 10:00 am
Subject: Re: Thanks for the replys. We have both
aussiebella
Send Email Send Email
 
Feel free to contact me on email
at:<br>virginif@... <br>We can make a time when we can all
chat..perhaps..week-ends best because of the terrible time differences. I
am 9 hours behind Tx and a day ahead...if that makes
sense..lol..so Friday evening you time would be good for me..as
it is saturday morning here!!! Cheers Bella

#11 From: becky_douget
Date: Wed Jul 5, 2000 5:59 am
Subject: Thanks for the replys. We have both
becky_douget
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been sick and out of town so I have not checked
in till now. I really appreciate both your inputs.
It helps to know that someone else understands and
can give me some pointers. We are still trying to
find a doctor close by that really keeps up with the
latest info on PD.We have had contact with a support
group so I'm hoping to get him to go. Will check in
later. thanks again, Becky

#10 From: aburkett99
Date: Fri Jun 23, 2000 9:25 pm
Subject: Re: Help......
aburkett99
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Hi Becky;<br> I just join this chat area. My
husband was just diagnosied with Parkinson's at the
beginning of this year. His dad had Parkinson's and just
died this last December. Everyone around him thought
it was something else, but from our studies on this
disease both my husband and I know that it was
Parkinson's. He also had other problems that didn't help him.
I hope that I can answer some of the question you
have and become friends with the same needs.<br>
Parkinson's affects the body in many ways and yes the brain
is involved. Short term memory can be affected.
There are a lot of thinks that need to be understood
for you to live with a person with this disease.
Patience is the most important thing. As years go by the
body will start to shut down communications from the
brain to parts of the body. Example; [You might want to
get up out of a chair, your brain is sending the
message to the legs, but the legs won't move. This can be
frustrating for you, but think about how he must feel,
knowing he wants to get up but can't. Feeling himself
telling himself to move but the body can't do it. Some
time it will, and sometime it won't. He will never
know when this will happen. That is where you have to
help him get up and get started. Then he will be able
to walk, and do what he wants to do.]<br> Hope this
helps a little, ask anything you would like, if I know
I will answer you, if not I will tell you I don't
know but will try to find out.<br><br>Annette Burkett

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