Welcome back. I apologize for the dearth of recent posts, but I really just needed some time to process everything after my consultation, and after learning that I have been approved for surgery.
To touch on the topic of surgery quickly, the team at OHSU think I’m an excellent candidate for DBS. I respond quite well to levodopa and have no worrisome speech or cognitive problems. They did notice that my mood fluctuates between mania and depression depending on my dose levels, but they told me this is actually another reason to consider the surgery. The hope is that my mood will level out if the stimulator lessens my dependence on medication.
While they’ve approved me for surgery they still need to go through insurance. My dad has already spoken with our insurance provider and it doesn’t sound like it will be a problem. I’m hoping that I will be having surgery sometime in December so that I can fully up to speed with the ideal stimulator settings no later than my 24th birthday in June.
In other news, my efforts with the Parkinson’s Action Network are starting to see some results. I’m happy to report that Washington Representative Dan Newhouse (R-WA) has joined the Congressional Caucus on Parkinson’s Disease. I’m still working to get both senators on board, and to get involved with the support group in the Tri-Cities.
Now that I’ve gotten that out of the way I’d like to focus on the topic of stress. I’ve written in the past about how the depression can exacerbate physical symptoms of Parkinson’s, and you probably inferred that stress can also worsen symptoms.
I’ve noticed a marked improvement in my symptoms since making it through my consultation. My medication has behaved much more predictably over the last few weeks, getting me 3 hours of on time fairly regularly with considerably less dyskinesia.
My girlfriend, Jasmine, has been noticing a worsening in her symptoms lately as she’s been dealing with a low-grade infection along the wires of her DBS system. Thankfully it’s looking like they caught it early enough to prevent it from spreading into her brain and necessitating the removal of her DBS lead. I know someone else who just went through a similar situation after a battery replacement, but they also dodged disaster. This is still a fairly uncommon complication, but the thought of having the whole system removed and having to go through the surgery again years after the system is installed isn’t particularly comforting.
Of course thinking about the future when you have Parkinson’s can be quite stressful, which can lead to worsening symptoms. Worsening symptoms also produce more anxiety and stress leading to even worse symptoms… you get the idea.
So how can you get on top of stress when you have Parkinson’s? I’m still working on it myself, but I know that taking a low dose of an SSRI (I take generic Zoloft) has been helpful for me. Exercise is also important. Now that it is a bit cooler out I’m trying to reestablish my routine of walking Shady each day, and I’m hoping that after I recover from surgery I’ll be able to crank up the intensity by adding things like weightlifting and hiking to my routine.
I’ve also read about the benefits of mindfulness and meditation for addressing negative thoughts. I haven’t really tried it yet, but the local neurological resource center does have a mindfulness group that meets every Friday and I think I’m going to check it out. They also offer art classes once a month to foster wellness, and I think I’m going to start going to these as well.
Another thing I think I’m going to work on is starting a daily yoga practice. It’s pretty amazing how much better my body feels after even just a few minutes of stretching, and deep breathing exercises will help me deal with stress better as well. Tai Chi has also been shown to be beneficial to people with Parkinson’s, so I might start doing that in the mornings as well.
A lot of my life right now is about making the best of my ons to form positive habits and get out and be social when possible becuase there are no guarantees. I hope that as I learn to better manage my stress my symptoms will lessen and I can build on my momentum and make the cycle work towards my benefit. DBS should make this considerably easier. I’m planning to write more about these practices and their benefits in the future.
My big project for this month is to work on my disability claim. Thankfully DBS should make it possible for me to work again, but I need to have it lined up just in case. It’s a big, scary process and I plan on writing about it to give you all a look at what it’s like.
