Same Shit, Different Day (Welcome to PD Purgatory) and Thoughts on a Televised Brain Surgery

So here we are again beginning a blog post with an apology for a lack of recent posts. Perhaps I shouldn’t be sorry, because I feel like there wouldn’t be much interest in reading what I feel like has been life stuck on repeat.

Sure I find small projects around the house to keep myself busy: I built an extremely ugly but fairly effective support frame to improve my futon, and I upgraded my mid-2012 MacBook Pro signifigantly by swapping out the original 1 Terabyte HDD for a 512 Gigabyte SSD and increasing my memory from 8 GB to 16 GB. I can’t believe how fast my computer runs now, even when I’m running WIndows 10 and OS X El Capitan side by side. Unfortunately the replacement battery is in need of a replacement itself but I bought from a solid vendor so they’re taking care of it.

I’ve also reorganized my room to make it a more efficient place to hang out and work in both for me and my cat: I got a 20-inch monitor from a friend who had it in his garage and she got a sweet new bed made from a box and a blanket. The futon, which is now about a million-times more comfortable thanks to the frame, has been moved back to allow for space to do yoga or play Wii Fit, and it’s finally the right distance from the TV mounted on my wall. I have surround sound thanks to an old system my Dad had laying around. I got my filing cabinet out of the closet and next to my desk, and the new monitor allows me to work in a way that is a lot more comfortable for me which is a real blessing becuase poor posture can absolutely ravage my body. Between my revamped Mac, the new monitor and the discovery of a university provided download of Microsoft Office for both my Mac and Windows partitions I probably have a bettter office setup than most people, even if they have considerably more work coming across then their desk than I do.

I’m really hoping the lack of work clears up after I’m fully operational with DBS. There are some promising signs that I might be able to resume working with a local photographer who had taken me under his wing, I can put some more work into my pet photography business and if I really want to be a working stiff I can look for technical writing oppurtunities in the research district over in Richland.

In a way the feeling that I’m surrounded by so many oppurtunities that are just out of reach is the most maddening part of all this. I feel like I have so much to offer the world but I’m severely limited by the sheer unpredictability of my ons and offs even though my ons are still fantastic. Even Jasmine, my girlfriend and the Parkinson’s community’s answer to Wonder Woman, has told me it’s not a place she’d want to be and she was essentially at the end of her rope before her first DBS.

I continue to be amazed by Jasmine’s incredible resillience as she pushes through a very full schedule even with a body that is only truly functioning on her left (and nondominant!) side. Thankfully she’s out of the woods when it comes to her infection scare and is coiunting down the days for her next surgery on December 16. Like me, she’s waiting excitedly for the moment when she can mark my surgery date in her calendar. Hopefuly that day will come soon. OHSU is still shooting to have me under the knife sometime in December, but we’re still waiting on insurance. At this point I’m hoping to get the go-ahead in the next few weeks.

I’m still able to get out for walks with Shady, and now that it has cooled off I’m able to play tennis with less difficulty. It’s actually amazing how well I can play still when it comes to everything but serving. I’ve been looking for more excercises to do at home like stationary biking or Tai Chi, both of which are supposed to be extremely beneficial for Parkinson’s patients, but aren’t really something my body can handle. I know I’m lucky that I can still walk briskly, but it’s incredibly frustrating to be as limited as I am. I’m really just taking things one dose at a time at this point.

There have been a few highlights since my last post like watching all three Back to the Future movies for the first time on October 21 and catching up with an old friend from high school, who like me has had more than his fair share of health problems. The most significant event since my last post was that National Geographic televised an awake DBS surgery. While most of the knowledge wasn’t new to me I did find it interesting to see inside the OR. It certainly isn’t as scary as I would imagine, but I’m still significantly more comfortable having the procedure done asleep. I’m just a lot more comfortable knowing my surgeon will be using overlayed images in real-time to hit the mark rather than poking around with microelectrodes while someone listens for the moment they hit the spot. Frankly, it boggles my mind that they get such consistent results with the awake method.

If you read my blog you probably have some interest in PD, and I reccomend watching the video of the procedure. I should have written about it when it was fresh in my memory, but I remember being a little underwhelmed with how they explained the importance of patient selection and the almost complete lack of after-care discussion. Even considering those complaints I think it’s incredible that they were able to put such a program together. I’ve worked through my fears about the procedure and am now able to see just how life-changing it can be for the right patients, and I truly hope this program will help other patients overcome their fears about DBS and start exploring it as an option.

Like I told a particularly curious new barista at my favorite cafe yesterday, “It’s not as scary as it sounds.”