There really should be a test….

32 Comments

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 possess maybe a thimble full of patience – if that – I returned to work as soon as we flipped the switch. I continue reminding myself DBS for dystonia therapy is a slow process – six to nine months, not six to nine weeks.

Fast forward to July. All the progress I had gained this spring seemed to be slowly eroding. I headed back to the neurologist.

Dr: “Lori. You’re off.”

Me: Taking a moment to interpret if he’s commenting on my personality, before realizing he meant my device.

Me: What!!!

Sure enough, my device was off and had only been on 22% of the time since the end of May. (Henceforth the title of this post – there really should to be a test – the are-you-responsible-and/or-intelligent-enough-not-to-turn-off-your-very-cool-life-changing-implant test!)

Late May is significant, in that this was when I was granted permission to turn up my voltage by 0.1, to a 3.0 – at the time a new high. Turned it up…and apparently turned it off!

In the big picture, my lack of strong oversight and the fact that I turned off my DBS was the best possible outcome. We spent a month this summer closely watching my battery level and making sure it indeed was in the “on” position. Other, less optimal, options were a faulty wire or my inadvertently being in proximity to “something” that was turning it off.

Thank goodness it was simply me.

Safeguards are now in place: daily device checks and a small notebook in which I note all readings; friends at work who, if they see me stumble or clenching my fist, are encouraged to ask: 1) have you checked your device, 2) have you had breakfast, 3) have you taken your medication, and 4) have you exercised.

So, PT and OT begin again next week. Progress is being made. I would still repeat the surgery in heartbeat.

August 2019 – six months following DBS surgery
deep brain stimulation, dystonia

32 Comments »

  4. Aww, Lori, sorry about the “ooops” and delay but you are on road again!!!Yay, you are so strong and beautiful and loved! Praying things go perfectly right this time. I always keep you in my prayers!😍

    Sent from my iPhone

    >

  9. Lori, I don’t even know what to say other than I am really really happy that you are making such good progress. Now (by allowing others to help a little bit) you will at least have others looking out for you and can help you catch any potential problems early on. Hang in there, I am praying for you.

  13. So glad you got that figured out! So will you get those questions many times a day??? I will try to restrain when I see you!!

  14. Thanks for the update. Lori, we are all cheering you on! Now keep yourself turned on. So glad you found the solution. ❤️❤️❤️

  15. Perhaps you should become a list-maker.
    For example:
    THINGS TO DO
    1. Don’t turn brain doo-dad off
    2. Walmart – Milk, bread, eggs
    3. See number 1

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