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zeke1109

First DBS programming!

4 posts in this topic

My doctor wants me to come in the week of 11/28 for four straight days at 8am. I said that it will be difficult as it's just me, my 83 year old mom with a bad leg plus my caseworker who is overloaded with people and works 3 jobs. I can't just get that there that easy as services for people on disability don't start work until 9am .I asked for his offices help if they could just wheel me up to their office that would be a big help. My doctor doesn't care! He says 8 am is a reasonable time and if i want my programming I better be there. I don't know what to do now. I'm trying to find another programmer in the area (Hudson Valley area, pougkeepsie,ny, 12601) who maybe CARES a little more about his patients. Any suggustions?

 

ZEKE

Edited by zeke1109
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Four straight days? whiskey tango foxtrot?

 

My MDS is setting up programming one week apart for first month. She was commenting it will take three days for me to adjust "to the new me" and my remote is set up to allow changes from all the way off to 50% increase. Bottom line she knows how well I detail everything and wants me to have an idea what is going on for feedback.

 

Dystonia takes a week (a month?) to full respond.  I am cutting down to almost zero sinmet (doesn't seem real) while keeping adjustments small. My wife is invaluable for feedback.  I'm getting some odd cross over. Programming on the left is affecting the right side. It is freaky! adjusting things and see what is happening.

 

That damn battery is larger than I thought. I had seen the rechargeable (about 1/2 the size) in the surgeons office.  Didn't realize mine would be so big, but as swelling goes down it looks like I have a pack of cigs tucked under my shirt. Regardless, it has been worth it.

 

Meanwhile,  Lyft or Uber.  They hate Service Dogs, but otherwise come in handy for days like that.  Try reaching out to MEDTRONICS to find who else does programming. :)

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Hi, Zeke.  Pretty insensitive doctor.  Have you tried contacting any of the Parkinson's organizations?  I would imagine they would know of some other places as well as give you any tips that might help.  Keep us posted.

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Found it.  On Medtronic's web page is a "getting therapy" portal.  Type in your zip code.

 

http://www.medtronic.com/us-en/patients/treatments-therapies/neurostimulator-essential-tremor/getting-therapy.html

 

Typing in an Austin, TX zip code brings up everyone who can handle programming.  Oddly the Neurosurgeons are listed,

but they would refer you to an MDS.   Uh oh, with your zip code only Dr. FD is listed.  Expand to 50 miles, four listings,

out to 100 miles (NY,NY range) and 41 options. 

 

I still think that "show up four days in a row" is crazy.

 

He should give you a range (I can do down to zero, increase by 50%).... been tweaking it a little, but have a Medtronics

Seminar to attend about "voltage vs battery life".   Currently stable on TWO 25-100 Sinement + Medtronics a day. Doesn't

seem possible.  I still don't understand what is going on, but enjoying it while I can. 

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