Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
WindsongMoonChild

New Medtronics Web Site

Recommended Posts

Appala    8

Kim, as I recall, you offered to pass on DBS questions to your Medtronics rep or programmer? Where was that thread? I can't seem to find it now. I had DBS surgery a few months ago & am satisfied with the outcome, tho still working to fine-tune it. Unfortunately a friend had DBS a few weeks before me in the SF Bay Area and is  having big problems that only started after the DBS: a "runaway" jerky left leg that is out of control & now seizure-like episodes. He says his programmer has said she can't do anything more for him. He has gotten quite desperate & needs help. Can you please pass this on to your Medtronics rep & see if he has any suggestions? How can my friend find a really expert programmer in SF Bay Area? Many thanks, Appala

Share this post


Link to post
Share on other sites

This just in:

 

Please have your friend call Medtronic Patient Services and ask them to find a new DBS Programming Neurologist in the area. They have the ability to look for possible other providers in the area in our system. Or, ask them to please have the SF Medtronic DBS Rep call him. He will have to make the request and then wait for the local Rep to call back. Patient Services cannot provide a Reps contact information. Patient Services can be reached at (800) 510-6735 Monday to Friday during typical business hours. Hope this information helps.

Share this post


Link to post
Share on other sites
Appala    8

Kim, thanks so much. On Friday he finally got in touch with his DBS surgeon (at my urging), who has already replied with some ideas on how to proceed, so things  look more hopeful now. I'll send this info on to him as well and hopefully the problems will get resolved soon one way or another.

Share this post


Link to post
Share on other sites

Here's my opinion, for what it's worth...

 

Having a DBS in one's brain, is somewhat akin to being implanted with a foreign language chip (if such a thing were possible, of course) and, then, trying to converse with the surgeon who put it there in a language he is very familiar with, but fact is, this new language is not his native tongue.  Add to that, it's not your native tongue either!  So, now we have two people conversing in two languages (let's say, Russian and English) and one understands both perfectly, but separately, and the other, understands one perfectly, but the other... well, not so much.  In fact, the surgeon understands how to implant the language chip, what the language chip does, and all manner of nuances the language chip has, except... 

 

He has absolutely no idea what it feels like to speak in fluent Russian while trying to make sense of it in English.  He does not know why the new language chip works--enabling you to suddenly speak in Russian (although, he has lots of very good hypotheses)--it just does and, frankly, the benefits of being multi-lingual outweigh the risks of only being half understood or not being understood at all.

 

So, here we are, able to speak Russian, but not able to understand it completely!  We have been blessed with a genius who can gift us a second means of communication with our bodies--sorely needed, because we are clearly not communicating properly on our own--but, for all his genius, he does not know what it feels like to speak two languages at once, nor how to fully interpret what we are saying when we do. We try to convey our meaning, but the word we are looking for comes out in an obscure Russian tongue that none of us fully understand!

 

The end result?   Well, like many things in life, DBS programming is a lot of science, but it's an art, too.  And, it's complex art.  It's particularly complex because the scientists who program it need to learn the art of listening to their patient, who is now speaking in a foreign language they have fluent use of, but cannot completely interpret for themselves, much less explain what it is trying to say.  For their part, the patient, needs to learn the art of listening to the new language their body is speaking, without over or under reacting to a new phrase or word that seems familiar but, in truth, is entirely foreign. The patient also needs to understand that the doctor can speak multiple dialects of your new language, but must figure out first of all, which one you are using and, then speak to you in a pigeon language of his own that you often find difficult to understand. And, all this, takes place inside one's brain and body!   Is it any wonder it takes time to sort through everything and learn the scientific art of communicating in both mind and body with ourselves, our surgeons, and our neurologists?

 

Learning to speak this new DBS language takes time, patience (on steroids!) and, a healthcare partner you "click" with because he or she listens, listens, listens and, perhaps more importantly, understands that you and you alone speak this new language and you are an individual work of art.  Even if he can adjust the speed at which you speak, the tempo, even moderate the tone, or change some of your vocabulary, he cannot feel the nuances of this totally new language on your tongue, so he has to be open to your interpretation of things, just as much as his own.  

 

In conclusion, then, I'd say it's trial and error, trial and error.  But, for most of us, it's worth it in the end.  We have to remember, we are fighting a progressive, degenerative, neurological disease that is hell bent on having its way and, we must be realistic in seeing Deep Brain Stimulation as what it is:  A Treatment.  Not a cure.  And, because it's a treatment, it may require continual maintenance and adjustments--but, until there is a cure, I'm game to keep trying!

 

Kim

  • Like 2

Share this post


Link to post
Share on other sites
zeke1109    15

Kim

 Was curious about my first programming appt with my neurologist. He says he's experienced but when I called he asked when I had my 1st main surgery and then proceeded to make an appointment on the friday in the same week I just had my shoulder surgery! I still have a follow up on nov 23rd for checking the wires and having the staples removed (this was done together in order to save us from making 2 trips to Albany (2 hours). Now he's making appointments for the week after for 4 days in a row at 8am? He said it was the only way to squeeze me in. He doesn't sound experienced to me. Sounds like he's excited about trying this out on me! Anyway I can find information about what kind of experience he does have? I'm in the Hudson Valley near Poughkeepsie, NY. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×