Excellent job, as usual, Ray. Promising reply. I have
asked
that someone from Medtronic look into my case again, and
be
present at my next programming session.
Carole

> --- rayilynlee <[log in to unmask]> wrote:
>
> > Mr. Gregan:
> >
> > Thank you for your response.  I'm  wondering if
thereExcellent job, as usual, Ray. Promising reply. I have
> asked
> that someone from Medtronic look into my case again, and
> be
> present at my next programming session.
> Carole
>
> --- rayilynlee <[log in to unmask]> wrote:
> is
> > any way for patients to attend the programming
> seminars.
> > I have that machine that allows you to do it, but don't
> > know how to use it.  While it is true there are many
> > "passive" patients, quite a few of us are capable of
> > taking a more aggressive role in our own care.
> >
> > An email friend of mine in Flagstaff has been given
> > instructions as to how to set it herself.  She finally
> is
> > getting straightened out after getting a Medtronic
> > programmer after six people.
> >
> > There was a Medtronic person present at my DBS surgery
> at
> > Scripps in La Jolla  CA.
> >
> > I'm hoping Medtronic would seriously consider letting
> > patients attend the seminars.
> >
> > Rayilyn Brown
> > Board Member AZNPF
> > Arizona Chapter National Parkinson's Foundation
> > [log in to unmask]
> >   ----- Original Message -----
> >   From: Gregan, Joey
> >   To: rayilynlee
> >   Sent: Monday, January 07, 2008 9:56 AM
> >   Subject: RE: Need for Competent DBS Programmers
> >
> >
> >   Hello Ms. Brown:
> >
> >   Thanks for your email and I completely concur that we
> > are in need of more highly trained DBS programming
> > physicians and nurses in Arizona.
> >
> >   Until recently, the vast majority of patients
> referred
> > for DBS surgery came from three programs (Barrow, Mayo,
> > Univ. of Arizona).  All three of these programs have
> > excellent programming available.  As more and more
> > community neurologists become involved with the
> therapy,
> > they to are wanting to program their patients.  We
> offer
> > a number of educational opportunities for these
> > practitioners including Basic, Intermediate, and
> Advanced
> > seminars.  They also can elect to spend "on-site" days
> > with experienced centers for hands-on training.
> >
> >   In addition, we recommend to all our newly managing
> > customers to allow us to be present for programming
> > sessions until they are completely comfortable with the
> > process.  Most physicians gladly insist we be present
> for
> > these programming sessions but, some feel they are
> ready
> > to proceed independently.
> >
> >   In the future, you can ask your neurologist to have
> one
> > of us present at the next programming session.  I have
> to
> > tell you that DBS programming is more of an art form
> then
> > a step by step process.  There is a lot of trial and
> > error required along with balancing the reduction of
> > Parkinson medication to coincide with stimulation
> > increases.
> >
> >   Please let me know if there is any other information
> I
> > can provide and feel free to contact me either by email
> > or telephone.
> >
> >   Sincerely,
> >
> >   Joseph W. Gregan
> >   Market Development Consultant - Arizona
> >   Medtronic Neurological
> >   V/M 800-638-3143 ext: 95145
> >   Cell 480-215-6192
> >   [log in to unmask]
> >
> >
> >
> >
> >
> >
> >
> >
>
------------------------------------------------------------------------------
> >   From: rayilynlee [mailto:rayilynlee@cox..net]
> >   Sent: Sunday, January 06, 2008 5:07 PM
> >   To: Gregan, Joey
> >   Cc: Carole Hercun; Laureen Antes; Owens, Tess J.
> >   Subject: Need for Competent DBS Programmers
> >
> >
> >   Dear Mr.  Gregan:
> >
> >   Perhaps you can tell me who at Medtronic I should
> write
> > to regarding the need for competent programmers of
> > neurotransmitters for Parkinson's patients who have had
> > DBS.
> >
> >   As you may recall, I contacted you in 2007 regarding
> > the AZNPF Annual Meeting.  As a constant poster on a
> > Parkinson's website and an ear to the ground in the
> > Parkinson's community, I am hearing of more and more
> > DBS's gone wrong due to poor programming.  I have come
> to
> > wonder if I could get my voice back with better
> > programming of my NTs.  The programmer I had at
> Scripps,
> > La Jolla CA, where I had my DBSs done was much better
> > than my current neurologist here in Arizona.
> >
> >   Neurologists and neurosurgeons may be highly
> qualified
> > in their fields, but are not skilled at programming for
> > various reasons.  Programming now seems to be based on
> > the luck of the draw.
> >
> >   Medtronic certainly has a stake in DBS success and I
> am
> > hoping they can do something to make better programmers
> > available to DBS patients.  If there is anything I can
> do
> > to achieve this outcome, please let me know.  If
> > something isn't done, the negative DBS experiences may
> > outnumber the positive ones.  None of us want that to
> > happen.
> >
> >   Sincerely,
> >
> >   Rayilyn Brown
> >   Director AZNPF
> >   Arizona Chapter National Parkinson's Foundation
> >   [log in to unmask]
> >
> >
>
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