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  • Writer's pictureNed Neuhaus

The slow and deliberate programming of DBS plus seeing how well DBS/Meds control symptoms (#9 in Series)

Updated: Jul 12

In the subsequent months since my activation day, I have had several visits with my MDS to check in on my progress and make adjustments as necessary to my programming. Each visit was a chance to share my progress and to have my MDS examine me (normal UPDRS measurement of symptoms) before making any changes.


A PROCESS

Each visit resulted in slightly less medication and slightly more or slightly different stimulation settings. As we ramped up the DBS settings, we were slowly weaning me down on my dosage. Things were really going well. During my visit in early February (I was activated in early November), we talked about trying to continue weaning down to zero PD meds, since my symptom management was so well controlled on the very small dose I was still taking at that time.


AN UNBELIEVABLE RESULT

A little more than a month following that appointment, I took my last dose of PD meds (March 12, 2023). It was a little anti-climatic as I was currently taking 1/2 C/L pill twice a day before ending my meds totally. This was a trial just to see what happened next. Part of me expected to have to begin taking meds again shortly afterwards ... but I continued to get very good control of symptoms (for example, I have not experienced foot dystonia since activation day in November ... not a single time).


This is where the realist in me wants to make a point. Very few people can realistically manage their PD symptoms with no meds, most are able to reduce meds significantly post DBS. I hesitate talk much about my experience regarding meds because I don't want to create unrealistic expectations. When I go back to when I decided to have the surgery, eliminating meds was not on my list of desired results. I simply wanted to control my symptoms, especially foot dystonia for a period of time ... and if I was able to do that with less meds, it was a bonus.


I am so thankful that my desires were met with this surgery. I am beyond elated that I got this bonus of living without PD meds as well. I often tell people that I never realized how "medicated" I felt everyday until I was able to take PD meds out of my daily routine.


My symptoms remain well controlled, but this is NOT a cure and it is NOT a 100% perfect elimination of symptoms. During my April visit to my MDS, he did the standard exam on me and my PD symptoms. He told me that other than a tremor in my left foot / hand, he could not detect any slowness, rigidity or postural instability. He said if this was the first time he examined me as a possible person living with PD, he would want to see me again because he would think the tremor is a possible PD symptom, but he would not be able to diagnose me with PD! I asked him if I could quote him!


I just had another appointment in June, we are still looking at ways to manage the left foot tremor and some mild "balance" issues when I make certain movements, but I continue to take no PD meds.


A LOOK INTO THE PAST

July 4 was relatively quiet for us. As we talked, my wife and I were marveling at my progress post DBS. We decided to take a look at how well my PD Meds used to control my symptoms (knowing that we could not fully replicate pre DBS conditions) and how well my DBS currently controls them. For a few minutes, I turned off my DBS, putting me totally off all intervention for PD.






(Going from ON to OFF on my DBS controller and back ON)


Immediately after turning off the DBS, my right hand tremor comes back with a vengeance. My right shoulder raises, my arm tenses and goes into a dystonic posture. Both feet become "cemented" to the floor. Everything slows down ... even my eyes blink slowly and almost struggle to open normally. Dee Dee suggests marching in place (a great idea). I am barely able to raise my knees, dystonia kicking in on my right foot (not visible in the video). Shaking becomes worse, I feel very tense.


I decide to turn the DBS back on ... almost immediately, a calm comes over me and I am able to move normally again!


THANKFUL

While I am thankful for everything DBS has brought me, going through an exercise like above makes me truly thankful for the technology, the medical team and family and friends for their support in this journey! In the meantime, I remain grateful for being able to go without PD meds until that is no longer possible!




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3 comentários


Pat Pawelkop
Pat Pawelkop
27 de fev.

Your posts are so helpful. Thank you for the time and effort you put into sharing your experiences so that others can benefit.


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darter
05 de jul. de 2023

How appropriate for you to share your independence from PD meds on Independence Day! God Bless. Becky B.

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Ned Neuhaus
Ned Neuhaus
05 de jul. de 2023
Respondendo a

What a wonderful way to look at it! Thanks for your kind words!

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