Ugh
I spent part of 2022 in a PD haze. I didn’t feel well, I didn’t feel like myself, and my endurance seemed to be 10 minutes or less. Boxing was becoming a hassle and I was about to slip to a more assisted class to keep up. Last spring, I thought I had planted my last garden and I could not restart any fall and winter projects. I just felt bad all over. I felt like I was losing ground every month to Parkinson’s Disease. I told Alice Ann in the summer “that I would be in a wheelchair by Thanksgiving” at the rate I was declining.
On August 8th I saw my physician again and she changed my DBS settings once again and Boom; I knew instantly that I was better. I have had DBS for 10 years and although I was still much, much better than before surgery, the symptoms seemed to “migrate” with the settings I was on. Other people never changed their settings once they got “dialed in.” My settings seemed to “slip” often, requiring a pulse width, amplitude, or frequency change. Many times, my “adjustment” didn’t last a day. This had been going on for over a year.
Hmm
How did I get so messed up? I was checking with my doc every 3-4 weeks, but it seemed I could not improve. I started reviewing everything new in my symptoms and how my response to medication was not right. I reasoned that there was one cause for all of these changes, not a new disease and not caused by one DBS change. Probably one thing was causing my developing dystonia, my poor response to levodopa, my voice weakness, and my rapid loss of balance. Had PD entered an accelerated phase? If so, I didn’t believe I would not make it past 2023! I saw my doc on August 8th and laid it all out.
My physician didn’t seem too impressed with my rapid acceleration theory, and she agreed that I had a bunch of unusual manifestations, but all were possible within the spectrum of PD. She recommended a radical change in my DBS settings to both sides and after the change, immediately I felt better. I felt my head lift a little and I sensed a little hope creeping back into me. I found out over this fall that my symptoms were “more traditional” and sure enough, I responded to medicines “like I was supposed to.” All sorts of little symptoms went away due to one change- hand and neck cramps (dystonia), and confusion over my response to Rytary vs. Sinemet, all became clear (both are once again, effective).
Ahh
It has been three months now since that epiphany and I am still on the same DBS settings. I see my doctor every three months again, not every three weeks. I have tried changing my setting to improve my right hand, but every time I try to go up or down on amplitude, I get worse. I immediately go back to the August 8th setting where she had it. That’s okay! I can handle this just fine. I am out of the gloomy year and doing “the same” or better since August across the board. I am seeing a physical therapist to work on my balance now (more exercises). All due to a tiny change in the charge that pings constantly inside my brain.
I went outside yesterday and picked up half a cord of cut firewood the tree trimmers left for me. I stacked it in a long row. I awoke this morning with the painful tenderness of medial epicondylitis (tennis elbow) from lifting firewood.
And I smiled!
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Dan Stultz, M.D., is a retired physician who was diagnosed with Parkinson’s disease 14 years ago at the age of 57. He practiced internal medicine in San Angelo, Texas, for 28 years and became the President/CEO of Shannon Health System. He served as President /CEO of the Texas Hospital Association from 2007 to 2014 working on medical and health policy. He served as guest faculty at the Texas A&M Medical School in Round Rock and retired in 2016. He and Alice live in Georgetown, Texas.