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 →
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 →
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… →
So today was my second day back at work after a little more than a month off for deep brain stimulation surgery. At first I was scared the surgery would never happen. Next, I was scared the surgery would happen. (After all – it’s my brain.) I have hemi dystonia. After working in communication for over 30 years, my brain decides – at times – it won’t “communicate” with the left side of my body. I’m blessed to work in a hospital system with some incredibly talented neurologists and neurosurgeons.… Read more What is…second day back at work? →
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 →
I knew ahead of my Deep Brain Stimulation (DBS) – Stage I Surgery on Feb 20 that my post surgery ‘expectation of accomplishments’ were sliding down a steep slope toward illusionary. Reading: My plan includes to read or finish reading four books: Illume: Mysteries of Light by Fr. Philip Krill, The Library Book by Susan Orlean, A Return to Love by Marianne Williamson and Measure What Matters by John Doerr. Painting: I ‘planned’ to break open a new sketchbook – including a daily watercolor floral insert. Continuing in this vein…I… Read more Update and Random Thoughts: Day 5 Post Surgery →
Yesterday’s surgery was a success! I’m discharged and waiting on a wheelchair to head home. I foresee many naps in my future today.
I’ve always thought that “ain’t scared” sounded goofy – but it’s the only thing that comes to mind when I consider this post… Friends ask me if I’m scared about the upcoming deep brain stimulation (DBS) surgery. I’m anxious – not scared. Anxious about what to expect post-surgery, and honestly a little anxious about what I’ll miss at work and within my community groups and circle of friends while recuperating. I’m “scared” of what might happen if I don’treceive treatment, scared of falling more often and harder, scared of an increasing… Read more “Ain’t Scared” →
Lori Marble 