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 →
A few months ago the Mercy integrated marketing team asked if I would speak about my experiences leading up to the deep brain stimulation (DBS) surgery. The following link takes… Read more My experience: a video →
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… →
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 →
It’s been 24 days since the first surgery to insert the brain probe and 17 days since the battery pack insertion surgery. Following the second surgery, I made promises to… Read more Good news and progress →
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! →
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.
Lori Marble 