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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…

There really should be a test….

It’s the start of the Labor Day weekend and weeks/months since I updated my experience following deep brain stimulation (DBS) surgery. A packed work schedule at the beginning of the summer, signaled the potential for added stress. Obviously, life in general is not without stressors, but for me, it can intensify my hemidystonia symptoms: awkard gait, and clenched left fist. Refreshing my therapy timeline: I had surgery the end of February, device turned on mid-March, with physical and occupational therapy commencing in April. If you know me you know I… Read more There really should be a test….

Turn it up!

Today marks two months since my deep brain stimulator was turned “on”. When my power setting was initially determined, I could strut a straight line at a 4.0 I was sent home at a 2.0, with a device that would allow me to check my implanted battery strength and adjust my DBS device within a 2.0 – 4.0 range. Always one to think if a little is good a lot is fantastic, I began adjusting up, by 0.1 increments, my device on an every-other-day basis until I reached 2.9. At… Read more Turn it up!

Long Overdue Update

It’s been a little over two months since the first surgery. Just over one month since the deep brain stimulator was switched “on”. I’ve enjoyed renewed confidence in my ability to improve. We’re witnessing changes in my left leg which we can only contribute to increased circulation from improved mobility. I participated in a physical therapy evaluation last week during which it was determined that I have the “balance” of an 80-year-old…and trust me…I’m much improved! (Deep breath – I now have a goal – achieving the balance of a… Read more Long Overdue Update