Grappling With PD

aka the soundtrack When I arrived for the battery implant operation on 5/7, I was doing the check-in dance for the third time. Get there on time (early, if I am able), undress and put on the gown, get an IV started, wait for transport. For some reason, on this particular day, when the transport dude arrived and started pushing me along the passages that lead to the OR section, I had a mental impression of "Ride of the Valkyries" (which I mislabled "Flight of the Valkyries"). I thought of suggesting it, but did not speak up. At first.  The transporter dropped me off in a holding area next door to the OR. It was staffed by one kind old nurse who came over to talk to me. We chatted amiably for a few minutes, after which she returned to her desk and got back to work. On a computer. "Are you allowed to play music?" I asked, half expecting to find it forbidden. Without missing a beat, she said that she had never tried. As I watched h...

Several people have asked if DBS is a cure for Parkinson's (it is not) or if it will freeze the progression (it will not).  DBS is a treatment, akin to medication.  Each treats symptoms of the disease, but not the disease itself.  Neither can slow the progression of PD.  Medications are a pharmaceutical treatment, and DBS is a surgical treatment. An analogy that might help understand what DBS will do for most patients who undergo the procedure is a house which has a leaky pipe in the basement.  For my purposes here, the basement is the brain, the leaky pipe is PD, and flooding in the basement represents symptoms of the disease--typically reduced functionality (slow movement, tremor, freezing etc., but the symptoms vary from person to person). In the beginning the leak is small, and it goes unnoticed.  You have PD, but there are no noticeable symptoms, and it remains undiagnosed.  Over time the leak grows larger--PD progresses--until the water accumula...

To understand why I chose to move forward with DBS--and why I chose to do it now--some background is needed. First, there is the concept of 'on' and 'off'.  In the world of Parkinson's, 'on' and 'off' refer to the effectiveness of medication at any point in time, in terms of how functional you are.  Generally speaking, if you can do the things you want and/or need to do, you are on (or your meds are on).  If you cannot, your meds are off, or you are in 'off time'. Second, there are many medications used to treat the symptoms of PD.  I say 'treat the symptoms' because they do just that.  The symptoms are caused by a lack of the neurotransmitter dopamine, and while much research is ongoing to find a way to slow the progression of the disease, the historically-common medications mostly work to preserve and protect the dopamine that is in the patient's system, and to add artifical dopamine to replace the dopamine that the brain should...

I had planned to skip the Las Vegas Spartan races this year due to a lingering finger issue from my previous race in July 2024, but then I got a unique opportunity to participate with my daughter, so of course I jumped on that.  We finished in just under 2 hours, at 1:58:24 and 1516 and 1517/1963 for the Open and 996/1225 for men, 521/738 for women.  Here is a breakdown of the obstacles: 4 ft wall - passed hurdles - passed barbed wire crawl - passed monkey bars - failed slip wall - passed plate drag - passed spear throw - passed sandbag carry - passed Atlas carry - failed; I was able to roll the ball up onto my thigh as in the past, but then unlike those past races, I could not stand up with it. multi-rig - failed Z wall - failed inverted wall - passed; I actually got stuck at the top and asked the guy next to me for help after he got over.  He asked me why I was shaking--I didn't realize that I was--and he was suprised to hear that I have Parkinsons. bucket carry - passe...

DBS stands for deep brain stimulation. It is a well-established surgical treatment option for Parkinson's Disease.  For more details, see https://my.clevelandclinic.org/health/treatments/21088-deep-brain-stimulation My DBS journey began nearly a year ago, in the spring of 2024.  Prior to that I had heard about it, talked about it, and learned about it for a few years, but that is when I began to have serious discussions about it with my neurologist.  There are several steps to complete in order to determine if you are a good candidate for DBS.  Some of them can be completed just by looking at medical records--for example, determining how long it has been since diagnosis. Others require action, and we began to plan those action items in May 2024.  Among other things, I had to be tested for cognitive decline and get an MRI of my brain.  The final check was a series of standard PD tests--walk, stomp your feet, stand up from a chair, etc--without and then ...

Hyrox Las Vegas, Feb 1-2, 2025 Just like in Anaheim in December, my initial registration was for the men's open division, but it needed to be Adaptive.  I had changed it for the race in December, but I did not know whether that change was saved in some central database, or if I would have to make it again.  I did have to change it for Las Vegas, since each race stands on its own.  No problem--just a quick trip to the Puma Flagship store near Planet Hollywood. I was in and out of there in less time than it took to park :) They really were quite efficient at that store, and while I was there I learned that the race director was Yusuf Jeffers, the same guy I worked with in Anaheim two months ago.  Talk about a class act . . . he has a hundred things going on all at once during an event, and he still took time to meet with me, answer all my questions, prepare his coaches for my appearance . . . you name it, and it got done.  On top of that, there was the award Sund...