Leah,

The adjustment of the stimulators is often quite a problem and takes a fair
amount of time.  You mention stimuulator,  was it bilateral or just a single
sided implant.  Was the surgery Subthalamic or thalamic  (which is approved
for tremor).  How far are you from Marshfield and how long does it take to
get there?  Distance becomes a major prolblem in getting the adjustments
correct.  I had my STN DBS at Rush-Presbyterian in Chicago and I had to
travel to Chicago (150 miles) from Madison every several weeks for most of
the summer before it was adjusted correctly.

Charlie

Charles T. Meyer, M.D.
Middleton(Madison) WI
[log in to unmask]

----- Original Message -----
From: Leah Reichhoff <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, October 19, 1999 7:40 AM
Subject: Re: Welcome to the PIEnet!


> My husband had a STNDBS done on September 23 at the Marshfield Clinic. The
> surgery was considered successful and he returned home the next day. Two
> weeks later he returned to have the stimulator turned on.
> Since then, he has had balance and walking problems, some of which seem
> major to us, since this wasn't the problem before. We are in contact with
> the Doctor every few days and will be seeing him soon.
> Has anyone else had problems like this. It seems we have traded a very bad
> tremor for not being able to walk across the living room.
> Grady was diagnosed with Parkinson's in 1991 and continued to work until
> 1996 when the disease escalated and he was disabled.
> My name is Leah and I have been watching with great interest
> theconversations on the list. Hope someone can give us information that
> helps our situation.
> Thanks for your help,  Leah
> ----- Original Message -----
> From: janet paterson <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Tuesday, October 05, 1999 3:20 PM
> Subject: Welcome to the PIEnet!
>
>
> > welcome to the newest PARKINSN list-member and cyber-sibling!
> >
> > hello!
> >
> > i am janet paterson [one tee]
> > sometimes known as the list-elf
> >
> > welcome to one of the finest sources of information and support
> > for people with parkinson's [PWP]
> > and their caregivers [CG]
> >
> > barb patterson [two tees - no relation!] the list founder
> > sometimes known as the list-mom
> > established PARKINSN
> > in november 1993
> >
> > i discovered it in october 1995, 7 years after my own diagnosis
> > and count that discovery as a turning point
> > for me in dealing with pd
> >
> > here are some list caveats:
> >
> > beware flames:
> > robust and frank discussions -  yes
> > personal attacks - no
> >
> > beware sales pitches:
> > no overt commercial soliciting
> > no covert commercial soliciting
> >
> > beware all netniks:
> > please note that none of us are medicos:
> > discussions here should not be construed as 'professional advice'
> >
> > beware incoming e-mail:
> > we currently have 1800 members worldwide:
> > list message volume can vary anywhere from 20 to 60 messages per day
> >
> > this is my favourite list description:
> > >--------------------------------------------
> > >i cannot see the volume as a 'problem'
> > >whether there are 30 messages in one day or in one hour
> > >whether they are all about pd or not
> > >whether they are all about snake oil or not
> > >
> > >they reflect the living breathing organism
> > >which is this cyber-family
> > >
> > >we are not a corporation bound by company rulebooks and standards
> > >we are not a school bound by a curriculum and exams
> > >
> > >we are part of a new frontier of democracy
> > >where each one of us has
> > >the same opportunity to be heard as everyone else
> > >and
> > >the same right to speak as everyone else
> > >
> > >personally
> > >i find it awe-inspiring just as it is
> > >--------------------------------------------
> >
> > below please find
> > a welcome message from barb patterson
> > along with a summary of the list subscription instructions
> >
> > please contact me if you have any questions or need more info
> > or visit the PIEnet section of my website [URL below]
> > which i have dedicated to this
> > marvel of a medium
> >
> >
> > janet
> >
> >
> > janet paterson
> > 52 now / 41 dx / 37 onset
> > snail-mail: PO Box 171  Almonte  Ontario  K0A 1A0  Canada
> > website: a new voice <http://www.geocities.com/SoHo/Village/6263/>
> > e-mail: <[log in to unmask]>
> >
> >
> >
>
 ===========================================================================
> >
> > Welcome!
> >
> > You have joined the PARKINSN mailing list also known as the Parkinson
> > Information Exchange Network [PIEnet].
> >
> > Please send a message to the list members (if you want to) introducing
> yourself
> > and any Parkinson's-related topics you would like.
> >
> > Let me introduce myself. I am a secretary for six faculty members in the
> School
> > of Nursing, McMaster University.  In September, 1992, I was diagnosed as
> having Parkinson's ... hence my interest in this list.
> >
> > My purpose in starting the list was the exchange of information about
> > Parkinson's. The list rapidly changed into the largest support group I
> know.
> > Besides its original purpose, the list has become 'a means of feeling
> connected'
> > to other members... a way of feeling we're not alone... of making the
road
> of
> > life with pd easier to bear.
> >
> > I have always felt that we hear each other better on the list because we
> can't
> > see each other.  Symptoms, age, colour, race, don't interfere.  The list
> knows
> > no countries, has nothing to do with money... there's no "what's in it
for
> me?"
> > But these same qualities mean our words are open to misinterpretation.
> Since
> > others can't see our wry smile or wink or hear our tone of voice, a goal
> of
> > keeping it "short & sweet" can result in appearing abrupt.  Also, the
same
> word
> > can have different meanings and different shades of meaning to different
> people
> > in different areas of the world so care must be taken in writing and
> reading of
> > the messages..
> >
> > Be kind.  Be honest.  Share the time fairly.... if you think you have
> taken
> > more than your share of the list resources, you just might have. Keep it
> > generally related to Parkinson's.  Don't abuse the generosity of the
> University
> > of Toronto's free gift of the list.  Don't include all of the message to
> which
> > you are replying. Use plain text with no attachments.  Wash your hands
> with
> > soap before you eat. :) In other words, use the same common courtesy
that
> you
> > would elsewhere.
> >
> > We need everyone's voices if we are going to make a difference in the
care
> &
> > treatment of pd and the motivation and funding of research.  Speak up.
> Tell
> > your story.  Ask your questions.  Answer questions.  Debate/argue about
> the
> > answers.  Debate/argue about the goals, administration, day-to-day
> functioning
> > of the list.  Tell a joke... but please don't attempt to silence anyone
> else's
> > voice.
> >
> > The messages on the Parkinsn list may be personal but they are NOT
> private...
> > never have been.  The illusion of privacy when using email is just that:
> an
> > illusion.
> >
> > Never, in the known history of this planet, has this kind of
relationship
> > existed. We meet in a place that has no walls.  We talk to our friends
> whom we
> > have never seen.  We care deeply for other members whom we will never
> physically
> > hug.  Folks, we're making it up as we go along so any rules have to be
> flexible.
> >
> > I hope you enjoy your involvement with the PIEnet.
> >
> > Barb
> >
> >
>
 ===========================================================================
> > Barbara Patterson
> [log in to unmask]
> > HSC 2J22                                        905-525-9140, ext. 22403
> >                         School of Nursing
> >
>
 ===========================================================================
> >
> >
> > Subscription Instructions: The Short Version:
> >
> >
> > List Address: for posting a message to the PARKINSN listmembers:
> >      [log in to unmask]
> >
> > Command Address: for sending a command to the LISTSERV computer:
> >      [log in to unmask]
> >
> > To obtain a list of the commands that the listserv recognizes:
> >      HELP
> > To obtain your current subscription options:
> >      QUERY PARKINSN
> > To receive copies of your own messages:
> >      SET PARKINSN REPRO
> > To change from individual messages to the digest format:
> >      SET PARKINSN DIGEST
> > To change back to individual messages from the digest format:
> >      SET PARKINSN NODIGEST
> > To stop incoming mail temporarily:
> >      SET PARKINSN NOMAIL
> > To resume incoming mail:
> >      SET PARKINSN MAIL
> > To stop incoming mail permanently and terminate your subscription:
> >      SIGNOFF PARKINSN
> > To subscribe, send this command:
> >      SUBSCRIBE PARKINSN YOURFIRSTNAME YOURLASTNAME
> >
> > more detailed instructions are on the World Wide Web at:
> > <http://www.geocities.com/SoHo/Village/6263/pienet/subs/>