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Tag: dystonia

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 is…second day back at work?

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?

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!

Update and Random Thoughts: Day 5 Post Surgery

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

Specifically…

Everyone has been lovely – truly – stopping me to say they’re praying for me. It means the world. Here’s a request though, when you pray, pray specifically that any roadblocks to the internal review of the surgery be lifted, eradicated, wiped out, disappear. No one discounts the dystonia diagnosis. There are numerous examples of deep brain stimulators improving the lives of people with this condition. My surgeon is highly qualified and experienced. This is simply new ground for my healthcare system. So…please be specific. Pray that surgery proceeds as… Read more Specifically…