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

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

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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[Non-text portions of this message have been removed]

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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[Non-text portions of this message have been removed]

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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[Non-text portions of this message have been removed]

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.

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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[Non-text portions of this message have been removed]

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

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

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

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

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!!

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!

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?

Just to let the board know, jdpaul's husband died Aug. 2nd.  Prayers need.

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

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

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

Hi Becky.<br>I am sorry to have missed you. I
have looked several times to see if you are on-line.
Please feel free to email me virginiaf@..., I
don't know if I am able to help, but would be happy to
assist you in any way I can!<br>In the meantime I have
posted in the PLWP Partner Forum, would appreciate your
imput there too! Best wishes Bella!

Thanks for the reply...my email is
becky_douget@...'s yours? My husband was diagnosed 2 years ago..
but
has had complications with allergic reactions to the
meds. stomach problems, hallucinating, being oblivious
to things going on around him. He's a County Judge
here and this is not good for his job.. We're in
Centerville, Tx. where are you?

I can understand.  My husband is having a hard time with sorting out stuff.  How
long has PD been dx'd?  My husband was dx'd in 1993.  What's email?

I need some input from others living with someone
that has Parkinsons. We are just going thru the
stages, not really understanding what is happening. Does
this disease affect the brain as far as knowing and
understanding the things you have always done? I can't seem to
find anyone with an answer. Does anyone know??

Is there a certain time or day that people visit here?  I keep checking for
someone to talk with.

My wife and I have helped many people with
debilitating illnesses from CFS to Parkinson's. The products
are 100% natural and offer a superior delivery system
that helps your body to heal itself. This is not a
cure, but a significant way for patients to reduce
symptoms. Many doctors are providing this to patients and
we have letters and testimonials. We have submitted
information to Michael J. Fox Foundation and are awaiting a
response. Call 203-325-2139 for more information.

Are there any other carepartners thinking of or
going to start journaling? How do you write down your
thoughts? The journaling chat meeting that's coming up will
help you get started. I'm only beginning too. Joyce

Thank you for providing a place for us too. I am
very grateful to have found MGH and now we have PLWP.
It has helped me to cope and will continue to help
me cope as this PD changes and throws my husband and
I curves. Thank you for being there. Joyce

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