Grappling With PD

I used to say that, and it used to be true.  For a long time, probably my entire adult life, I had good reflexes, balance, and coordination.  Likewise, for at least five or six years post-diagnosis, it continued to be the case tat I did not fall. Then the exceptions started. First there was the infamous broken leg after the BRR in September 2022.  That was quite serious, of course . . . but as a fall?  I stepped off a ledge that I could not see in the dark, and at that point my options consisted of fly, float, or fall.  I'm not a bird nor a balloon, so of course I fell.  That situation was so freakish and unlikely to be repeated, though, that it was hard to say that the I-don't-fall era was at an end. Next there was a nasty spill on a trail run nearly a year later, in June 2023.  I wrote about it at the time (https://grapplingwithpd.blogspot.com/2023/06/the-good-bad-and-ugly.html); that was another freak accident, although not nearly as unlikely to h...

Gunsite 250 I almost did not go. The trip was not planned very far in advance, and my main goal was to get Charlie into the youth 250 class.  Money has been tight, and I was planning to spend the week working.  I asked for and received approval to work remotely . . . and then spent a few weeks pondering what I should do.  All of this was really just a smoke screen that I was using to hide the real issue:  fear.  Fear of the unknown, fear of failure, fear of being embarassed in front of my peers, fear of not meeting the instructors' expectations. Fear that I would not be able to find even a small piece of the old me, and that there was nothing left to find.  Fear that the younger, healthier "two-gun Greg" from years ago at a place that no longer exists, was simply dead and gone.  I did not expect to finish the week.  To be honest, I wondered if I would make it through the first day. So what happened?  Why did I change my mind and go?  I w...

Yesterday, we turned on it on.  Powered it up.  Made it so.  Got 'er done. I felt nothing.  At first.  After a minute or so, I felt just a touch looser, as if I had taken a handful of pills and then waited a half hour for them to start to kick in.  It was a subtle feeling, and at first I wasn't even sure it was real.  But then I moved a little--sat down, stood up, walked around.  No doubt about it, I was more relaxed and moving more smoothly.  This was after skipping all meds for the day, so while this was one of my better unmedicated days, I was still unmedicated and in fairly rough shape. My first thought was that I should not take my scheduled meds as planned.  Why?  To see how close to "there" the new DBS signals would be able to get me.  However, the neurologist thought that would be too many variables changing all at once, so I resumed taking them.  Not quite as scheduled, but I took them. The tracking and controllin...

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...