DBS and me. How'd we get here?

Hiya - Lori here. 

Most of you know that I have been grappling with Parkinson's since early 2020 and before when my symptoms had no name.  There have been many stages from early denial to recent realizations.  My journal reflects on the loss, grief, optimism, pessimism, potential causes, potential cures, eastern thought, western science and the kindness of others.  More on that later...

The current score is LORI - X, Parkinson's -X+1.  

over the last year, I've been focused on vibrotactile gloves.  It's been a great project with a lot of positive result for me. My "on" periods have been greatly improved, but simultaneously "off" windows have become more frequent and much more severe.  It's a problem.

DBS isn't a cure, but it should help with the severity of the on/off fluctuation.  I hope that it allows for greater functionality, alleviates the dystonia in my upper back & neck and allows me to move more. The risks are that it may worsen balance and voice - which are already poor.  

The cure is likely coming in the form a repurposed drug in the form of a GLP1, RB-190 or stem cells.

Key dates

6/19 - MRI

6/24 - Slip & Clip.  Buzz cut for dr. patel

6/25 - Stage 1 - Bilateral filaments inserted into brain targeting the GPI region.

7/2  - Stage 2 - Generator

7/9 - Programming

Updates will be posted here to let everyone know how its going without blowing up anyone's cell phone ;-)


Comments

  1. KatieJune 25, 2024 at 6:55 AM

    Buzz cut here we come! I love you!

    ReplyDelete
  2. KathyJune 25, 2024 at 7:17 AM

    You've got this! Prayers lifted for a successful procedure.

    ReplyDelete
  3. AtchJune 25, 2024 at 7:25 AM

    Sending you positive vibes today!!

    ReplyDelete
  4. TrentYJune 25, 2024 at 7:34 AM

    We're with you Lori!!

    ReplyDelete
  5. Melissa PearsonJune 25, 2024 at 2:38 PM

    Wishing all the positive energy your way Lori!

    ReplyDelete
  6. StacyJune 26, 2024 at 5:40 AM

    Love you girl. Embarrassed I'm just learning about all this. xoxoxo

    ReplyDelete
  7. Claudia HamillJune 27, 2024 at 5:10 AM

    Get it by the horns, Lori. Sending strength and love.💕

    ReplyDelete

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