Turn it up!

Today marks two months since my deep brain stimulator was turned “on”.

When my power setting was initially determined, I could strut a straight line at a 4.0

I was sent home at a 2.0, with a device that would allow me to check my implanted battery strength and adjust my DBS device within a 2.0 – 4.0 range. Always one to think if a little is good a lot is fantastic, I began adjusting up, by 0.1 increments, my device on an every-other-day basis until I reached 2.9. At that point cooler heads prevailed and asked if I had ran my high voltage philosophy past any experts – or possibly a neurologist- and I had to admit I hadn’t.

I was one month “in” at that point. I had been evaluated by a neuro-physical therapist but hadn’t started treatment. So I asked my care team about my plan and was politely asked to stop. I was politely reminded that my body had to catch up to the treatment provided by the DBS. This wasn’t going to be a quick fix. I most likely wouldn’t see changes until six months.

So I waited.

Please note: turning up the device in the early stage was cool. I would feel little pin pricks or muscle twitches – only on the left side of my body.

Last week I asked for and received permission to adjust the dial up once again from a 2.9 to a 3.0. This time there was no inward sensation. No buzz. No twitch. No prick.

Ugh.

Except today in therapy there was noticeable improvement in mobility, plasticity, and range of motion. So much so that the therapist asked if I had indeed been granted permission to up the setting.

So…it was cool to learn first-hand the experts really do know what they’re talking about. That…and I’m still wearing some awesome earrings.

17 Comments »

  1. Completely agree with the “storm sleeping”… Well, I truly just want you to KNOW how very proud I am of you!! You never have ceased to amaze me with your professionalism, poise, and patience in the handling of the diagnosis and treatment. You are to be applauded!! I’m honored to call you friend. Now, hopefully soon, you’ll find some much needed rest. Truly, with love… ❤️😍😘🥰😴😴😴

  2. I guess tonight will not be a good one for sleep for you. Now me—I love to sleep and listen to the rain and thunder (as long as there are no tornado watches). So I should go to bed, but have too much to do before heading for the lake again.
    I’m so glad the DBS is working well. I understand how great it is to see improvement with mobility as. I’ve been doing physical therapy this month to correct some mobility difficulties I have been having.
    You do have some awesome earrings!
    Kate

  3. Lori, it sounds like you are doing so well! You looked great at St. Avips! Keep up the good work. You have a great attitude!

  4. Two month update shows continued progress, and that’s so wonderful! Great team of specialists looking out for you, and we are so grateful for the experts.
    Noticed no hurdle w the 18-step grand staircase at Chels’ wedding on Saturday 😄

  5. Doing good! I had to laugh when I read “if a little is good, a lot is fantastic!” I have always gone by that rule!

  6. Looks like you are on the right track…you look great and seem to keep improving…God is so good and we are so thankful for your progress…:)

  7. Wow, what a thing to happen. So glad it has been figured out and you are back on track. You will gain everything back, of that I have no doubts. God is so faithful and with your grit and determination you and He make a great team. We love you and you are in our thoughts and prayers. 🙂

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