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Tag: DBS

3 days/4 channels…and Excel

Anyone with a deep brain stimulator – for dystonia – will probably recount different experiences of how quickly and how effectively their treatment worked. (Quickly is operative here. For most DBS/dystonia recipients results aren’t readily apparent until they are a year to 18 months within their treatment.) I’m triple blessed. First, I could tell from the first day that we turned the battery “on” that this device would help. Second, my care team have been open to to trying varying approaches to channels and intensity of settings to find the… Read more 3 days/4 channels…and Excel

Beautiful synchronicity

My iPhone has a mind of its own. Dropping my phone into my purse or accidentally sliding it across a hard surface will activate Apple Music to being playing songs from my library. Earlier today, after knocking several items off my desk, I heard the familiar bass guitar beat of one of my favorite songs Turn It On Again by Genesis. Earphones in and volume up, I enjoyed a quick 3 minutes and 52 seconds of 80s power chords. I’ve said before that if I were a professional baseball or… Read more Beautiful synchronicity

What a long, strange year…

I did not want the day to end without acknowledging that it was one year ago when I fell down our kitchen stairs, placing the shattered pieces of one of my favorite coffee cups in my leg, blackening my eye, cutting my face…and finally convincing myself that something was seriously “off” with my health. Over the past 365 days: I received the confirmation of a diagnosis of hemi-dystonia, undergone deep brain stimulation surgery and work with wonderful physical and occupational therapists. Past year highlights: friends who gave me a roller… Read more What a long, strange year…

Oh. My. Goodness!

It’s working! We just finished two hours with the Medtronic representatives – testing the device, setting my levels. One of my fears was that today would feel like it does for me when I visit the eye doctor: “Is the first lens better than the second? Is this view better than the last?”….and many times I’m thinking, “Well there’s good aspects to both. Which one is best?” Nope. This was, and is, clean cut. As one of the sensors was activated, I would feel tingling and possibly my speech would… Read more Oh. My. Goodness!

It’s “Go” Time

Tomorrow morning, Thursday, March 21, is “Go” time for the deep brain stimulation (DBS) device! We meet with my neurologist and a MedTronic representative at 9am to turn on the device. We may have good luck on a tuning right off the bat. We may have to adjust the settings over a series of visits. I’m becoming increasingly impressed with the skills of the physicians and the technology behind the device. There are some crazy smart people in the world and I’m fortunate to have this opportunity. This time feels… Read more It’s “Go” Time

Surgeries – all done!

Both Stage I and Stage II deep brain stimulation surgeries are complete and behind us. Throughout all the experiences and appointments leading up to and during these procedures, we have met the smartest and kindest medical professionals. It seems as if I haven’t been at work in ages. I’m missing my routines. I’m missing my friends…which may have been part of the impetus behind my pushing the limits ‘just a smidge’ at home Tuesday afternoon. I experienced a seizure, which we discovered isn’t uncommon after this type of surgery –… Read more Surgeries – all done!