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 best options. Third, the form of dystonia I work experience is hemi-dystonia, only impacting one side of my body – the left. Which leads to the 3 days/4 channels heading.

For the next three months, I will move rotate my DBS settings around the four different channels. Three days on one channel at the same intensity, then move on day four to the next channel, same intensity for four days and so on.

Today is day five since starting this three-month long trial. I’m on Channel B at 1.75. Excel is my accountability tracker. Daily I log how many steps I take, if I have any spasms, foot drops or stumbles, etc. At the end of three months I’ll be able to chart my progress and response per each channel/setting with trend lines.

3 days/ 4 channels / 3 months / one brain.

14 Comments »

  1. You have an amazing balance between your creative side and your nerdlove Excel side! Keep up the great work and positive energy!

  2. If it weren’t happening to someone I know and care about very much, the science of this is pretty fascinating as are the different approaches being used to find your optimum brain power. So glad you are in good hands. So very happy you are doing well. Love to you as your health and response continually improve.

    Geri

  3. To me, it is so remarkably amazing what the medical field can offer now……and also, I think you are amazing…you are strong, determined, and never lose that beautiful smile. You are in our thoughts and prayers and we love you. 🙂

  4. So glad you are having success and getting to experiment to find your optimal treatment. I had no idea how complex deep brain stimulation was! Thanks for the updates!!

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