Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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----- Original Message ----- 
From: Gregan, Joey 
To: rayilynlee 
Sent: Monday, January 07, 2008 11:30 AM
Subject: RE: Need for Competent DBS Programmers


Hello Ms. Brown:

At the physician training seminars, there are usually several implanted patients in attendance that allow themselves to be used for practice programming sessions.  Other than that, patients are not routinely involved in these programs.

You do have a solid suggestion when it comes to the Kinetra device.  This is our only DBS stimulator that allows patients to make minor adjustments to their voltage within physician parameters.  It would be good to give patients the chance to learn how to properly make these adjustments, should the physician allow the patient to move within the settings.

I will make the suggestion to our education dept. and let you know what kind of response I receive.

Sincerely,
Joseph W. Gregan 
Market Development Consultant - Arizona 
Medtronic Neurological 
V/M 800-638-3143 ext: 95145 
Cell 480-215-6192 
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--------------------------------------------------------------------------------
From: rayilynlee [mailto:rayilynlee@cox..net] 
Sent: Monday, January 07, 2008 11:19 AM
To: Gregan, Joey
Cc: parkinsn; Carole Hercun; Laureen Antes; tess owens
Subject: Re: Need for Competent DBS Programmers


Mr. Gregan:

Thank you for your response.  I'm  wondering if there 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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