Quote:
Originally Posted by made it up
JGreentree,
Sorry I'm not in UK or US which I'm guessing is where you're located so can't help you with programmers.
That's where a DBS group might come in handy with some positive ideas for programming and reviewing the placement of electrodes.
Can you alter your settings yourself with the patient supplied programmer?
I can since last battery change and experiment a tiny bit at a time up or down and find it's much more satisfactory compared to having been put on the spot with a neurologist decide what's best for me and often being left worse off and needing to return and go back to previous settings.
If you can go up and down perhaps go back to the programmer and they can widen your setting range and it can become a DIY job!
Pulse width I can't alter.
Another thought is to lower the voltage (either you or DBS consultant) and increase levodopa eg Sinemet intake and that might work for you.
When you turned yourself off was it for several hrs or just a short time?
If your symptoms returned with a vengeance I'm thinking you might still be benefitting.
Is your speech better switched off?
Just some thoughts PM me if I can be of any further help.
Best wishes.
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First and foremost THANK YOU!
I do have a handheld Medtronics controller & I can switch between 4 stored programs and raise/lower voltages (within the limits written by the programmer)... The last programming session was 2 weeks ago; the programmer wrote what looks like a modified version of the "old" program I'm still using (same elements/phase, but longer duration bandwidth (up from 90 to 120 & bandwidth increased from 170 to 185, but lower voltages (down to
280 from 380)... Then they let me go & say SEE YA IN 2 Months! I've been to three different programmers in the past (NOT QUITE) a year , and the same "GROUNDHOG DAY" scenario plays out: EXTREME Bradykinesia especially on my left (weaker ) side. I can switch back & forth between preset programs & the same situation unfolds: 1) the old program still works "better"
2) taking more Sinemet makes me WORSE. I have to take one whole 100/25 tab in the morning, however I put it off for as long as my "sleep bonus" wears off, and this is the "best" part of my day. Every three hours or so I take 1/2 tab and generally do much better as they begin to wear off. ALL of the Neurologists I have worked with tell me to" TAKE MORE; you're UNDERMEDICATED!" If I followed their advice, I'd be in a nursing home by now. PLUS I have to watch what & when I eat... Each day walking becomes less of an involuntary function. A really BIG day for me is going to a doctor's appt and pushing a grocery cart while my wife takes me out shopping...I haven't been able to drive since September. I feel like a recurring dream wherein I am attempting to "walk" in an extreme blizzard where I cannot see either where I'm going or where I've been!
YOURS! Jeff
non-invasive ultrasound for pd is here!
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