September 7, 2024

August/September update:



Hello, everyone! I am SO sorry for not updating this blog in so long. It's been an extremely rough past few months and I've just been too depressed and sad to get on here and write anything. 
Back in June I was doing GREAT! I was feeling amazing and had little OCD/anxiety/and panic symptoms. Then I got super sick with COVID and I took a nosedive and just reverted back to having horrible symptoms. My nuerologist said that when Parkinson's patients w/ DBS get ill with a virus or get infections that their neurological symptoms can start to come back and get worse again. So that was her rationale for me relapsing. Unfortunately I didn't get any better until just yesterday when I had my most recent DBS programming appointment up at UW. 
At this appointment, my neurologist and team decided to put me back on the Dutch protocol for DBS. (I was happy about this–and wanted them to put me back on this protocol.) Immediately after they changed my settings I felt amazing! I felt cured, almost. I was having ZERO OCD intrusive thoughts, no anxiety, my depression lifted, my motivation shot up, my energy level boosted to the max. 
My team decided to put my DBS program on a cycle or "cycling" group. Meaning that my DBS stimulation would turn OFF at 10PM and ON again at 9AM. They did this so that I hopefully wouldn't get hyper manic again and have insomnia from being over-stimulated. Well after me and my Mom left UW, we drove south to Tacoma for 1hr and stopped to get McDonald's breakfast. Right at 10AM I suddenly had a severe panic attack with millions of intrusive OCD thoughts bombarding me, worries about things, doubting things, needing to check, needing to get reassurance, etc. 
This lasted for 30mins until I opened my DBS app on my Medtronic phone and went in and changed the DBS parameters from the "cycling" group to the "constant" group. The constant group was the exact same settings as the cycling group–just with the difference of it being constant stimulation. Which requires me turning it OFF at night and ON in the AM. Whereas the cycling group turns on and off on a schedule. What I think happened is that my Medtronic rep and Neurologist accidentally programmed the time for the cycling group from 10PM to 10AM–and NOT 22:00hrs (10PM). This would make sense as to why suddenly at 10AM sharp that I started having symptoms reappear and a panic attack spawn. I talked with my neurologist and she said that she didn't think this was possible, because the Medtronic device only cycles with hours, and not like an alarm or at a set time. So it's just set to turn on for 13hrs and off for 11hrs. She said she was going to talk with my Medtronic representative and see if there was a glitch in the system or if something could have gotten messed up on their end. I'm waiting to hear back from her. 
So two days out I'm feeling great. I am weary about the effects of these new DBS parameters lasting. I have the WORST luck of anyone you know. Especially when it comes to my health, I am just praying  to God that these amazing effects last. Please keep me in your thoughts and prayers, too, my friends!
My team informed me that they are doing a case study on me and are going to write up a study for a peer-reviewed medical journal that they are hoping gets published. That's kind of cool, isn't it?

Anyways! So that's an update on how I've been doing. TLDR; I was doing HORRIBLE for months, until my most recent DBS settings adjustment appointment on 9/06/24 where they put me back on the Dutch protocol and higher mA settings; and now I am doing and feeling amazing!



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