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It's been a year....

June 20. 2025   Forgive me for not saying "happy anniversary, dbs" or gushing about how amazing it is to "have my life back" as every dbs patient seems to say in their own way during their testimonial. its a long gap in the blog timeline is because I didn't want to chirp about how i tested another ten dbs programs and another and another testing over 100 major combinations.  I tracked symptoms and dopamine doses religiously, hopeful that we'd find that proverbial needle in the haystack. But i felt like no matter what we did my crushing  dystonia was determined to put huge pressure on the back of my neck. It is an involuntary muscle contraction that can only be described as torque.   To be fair the symptoms in my feet were not horrible except for freezing in tight spaces and corners, the dbs is pretty good at activating my feet. But, we have not been able to find a program that  does the same positive neural connection work for my upper body. This leaves me (...

Slowly but surely.

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 September 5, 2024 - 8 weeks post surgery When asked "How are you doing?" the standard american reponse is "Fine" or "Great!".  have you noticed that anything less seems to make the conversation uneasy on both sides?  (Try it out with someone to see for yourself).   My frequenr responses these days are "OK" and "hanging in there".  Why? Because social conventions of "great" and "fine" don't apply when you look like Eleven from Stranger Things and walk like Uncle Fester (The Addams Family). Since the walking video on July 24, it's remained the high point of my physical recovery.  Looking for solutions to the dystonia in my upper body, my legs and feet can go purdy fast...but its difficult stand up fully even though i know well that it would help my balance tremendously.  The involuntary tension in upper body needs to release before that work can be accomplished. My neurologist considers my case to be complicat...

Then She Walked

 Right out of the neurologist office and it was overwhelming for all of us.  July 9th was programming day. Her device will continue to be fine tuned over the coming weeks.   More to come.  

Post surgery #2 Update

 Lori is out of surgery. More info to follow. 

Surgery #2

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  Today is surgery number 2 for Lori.  They will implant the controller/battery unit into her chest and connect it to the leads already placed on her brain.   Our hope is that they turn it on, to a low setting, so we may see some benefit before the actual programming on July 9th.  We are already seeing some benefits and remain optimistic for a wonderful life changing outcome.   The surgery is scheduled for approximately 12:30 PM CST today.  Please keep us on your hearts and in your prayers sending all the positive energy you have.   Thank you all so much for the continued love and support as we continue on this journey.  

June 27. Big Escape

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 Headed home today.  

Update June 26

 Lori continues to do well post surgery. Hopefully, she can go home tomorrow.