Running On Little Reserve...

What going under the knife taught me about my Parkinson's

As my colleague walked out of the doors, I took a deep breath and let out a long sigh. I knew what he was going to say before he even came into the exam room – I would be undergoing emergency surgery for appendicitis. The concerns that were running through my head had nothing to do with the nature of the surgery, the potential risks and complications but instead, did I have enough Sinemet with me? What about my next dose of all my PD meds? Would the person assigned to put in my IV be skilled enough to hit a moving target?

The IV took a few attempts but the surgery went well, the power of general anesthetic to quiet twitching muscles.

Appendix out, mission accomplished.

After a restless night in an insanely uncomfortable bed, I was discharged home early, one of the fringe benefits of being married to a surgeon who could look after me at home. And then came the recovery period. There was the pain, a searing reminder every time I moved that my body needed to heal. As the days passed after my surgery and I began the longer than expected journey to recovery, I recognized an unwanted complicating factor, one that overshadowed every step – my Parkinson’s disease. Not only did I have to deal with the normal post-operative issues, but the PD complicated everything. My mobility was not only limited by the pain, but also because I was “off” much more. Turning over in bed was not more difficult because of the incisional discomfort but because changing position has been more challenging in recent years. My fatigue was amplified, my bowels were far more sluggish in getting back to normal and my mood was more difficult to manage. There were far more down days than good and that went on for weeks.

Thankfully that experience is now behind me, only the keyhole scars remain. But reflecting on how I felt, I recognize now, more than ever, that this disease leaves us very little reserve for any other challenge that may come our way, particularly when it relates to our health. This may be another physical ailment or a mental health issue. There is such a fragile interplay between our “on times” when the medication is working, the wearing off phenomenon and the drug side effects, which can be disabling in their own right. This fragility can be easily shattered and thrown into unpredictable chaos with very little effort. Changes in our sleep, nutrition, activity level, physical and mental stress can have significant impact on how we feel and function. That impact is amplified further depending on the severity of the challenge we are facing – another chronic physical ailment, a mental health crisis, surgery…any of these will compound our PD symptoms and likewise our PD will make facing these issues all that more complicated.

Unfortunately, this is the reality with Parkinson’s disease. We are stuck with trying to control a pervasive disease that is ever-changing and unpredictable, whose symptoms are so easily amplified. So, what can we do? In order to be prepared we must optimize our health on all levels – with proper self-care including sleep, nutrition, exercise and stress management. When these variables are optimized, our general health is better, we are stronger and we are better prepared to face other challenges life may bring our way, whether chronic or acute.

Although life with Parkinson’s is rather unpredictable, what we know for sure is that just because we have a chronic illness like Parkinson’s, we are not exempt from facing other diagnoses or challenges. The key is facing those difficult times with as much strength, physical and mental, as we are able to build through extreme self-care and preventative practices. Now that one crisis, an unexpected appendicitis, has been conquered, I am determined. Determined to be better prepared to face life and the inevitable issues that will arise. So that the next time the question I ask myself is not

“How long will I be down?” but “How quickly can I pick myself up?”.