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Category: 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 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….

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…

Surgery Postponed

Many of you are familiar with my “klutziness”. I have fallen into more rooms and meetings than I can remember.  Two years ago, I was diagnosed with hemi-dystonia. In its simplest terms, my brain often fails to communicate with the left side of my body. (Something I find incredibly ironic, having worked in communication for over thirty years.) This past September, I fell down a flight of stairs, at home, very early in the morning; when most of my body started down the steps to the lower level of our… Read more Surgery Postponed