Recently I went “off”. For those of you who may not be familiar, in Parkinson’s disease this refers to that period of time during which your medications are not as effective. When that happens, your symptoms return, which ones and their severity is pretty much luck of the draw. They can be unpredictable, severe and have a significant negative effect on quality of life for patients, impacting on activities of daily living and often leading to social isolation.
For the first decade and a half of my disease, I knew from a medical standpoint what an “off” period was but had never experienced it myself. The next few years brought on a number of “off” experiences which were self-limiting and concerning, affecting my ability to function but still manageable. Then I experienced being “off” in all its glorious severity, giving me an unsolicited look at what this disease, my version of this disease, is like 21 years into the game – and I wasn’t prepared.
Not only were the motor symptoms of stiffness, slowness and tremor difficult to navigate but the loss of balance and feeling so susceptible to falling was a frightening experience. However, what was most disturbing were the nonmotor manifestations particularly the depression and anxiety that appeared. My usual optimistic attitude was completely gone, replaced by fear and negative thoughts. My emotions were uncontrollable and my mind created issues and problems when there really were none. My version of reality was skewed and distorted. That to me was the most difficult and distressing part of this whole experience, not to mention how that loss of self, affected those closest to me.
So where am I going with this? Where is the lesson in that experience? Well to be honest, I’m still processing. My first observation is that this disease is insufferable at times, that it is truly progressive and relentless, leaving no facet of life untouched. But that is not a new lesson learned.
What I also recognize is that as much as we complain about the fact that the gold standard treatment for Parkinson’s has been around for over 50 years, thank the powers above that dopamine replacement exists. Without it, I would not be functional. It is truly life altering.
What I also recognize is that I am one of the lucky ones. I have access to excellent health care and any of the medications that I need, I can afford and they are readily available. My particular version of this disease is amenable to dopamine replacement and although there is a fine balance between symptom relief and side effects, an unavoidable daily struggle, I still manage to push through. I am also blessed with a devoted family and life partner who gives me strength to face whatever obstacle I encounter. Not to mention I am surrounded by a strong close-knit community of friends with Parkinson’s whose insight and support I find invaluable and whose understanding and compassion helped me through this particular episode. Truthfully, given my level of functioning, 21 years since my diagnosis, I am grateful for my life.
But I recognize that there are many in this Parkinson’s community who are not so lucky – those that struggle with access to good health care and affordable medications, who navigate this journey without the benefit of a reliable and caring support network and whose lives bend or break under the pressure of this disease. Not to mention those in less developed nations whose plight I cannot fathom.
So yes, this experience has definitely led to some introspection. What lies in my future? Will I be a burden to those that I love? What can I do personally to stay the progression of my disease?
But more importantly being in that severe off state has also renewed my sense of urgency and strengthened my resolve, my commitment to this beautiful and vibrant community to use whatever limited skills I may have to hasten the search for better treatments and ultimately a cure for this disease. It may look like a daunting and insurmountable task but I assure you that through our collective efforts, we can contribute to a day that the term “off” refers to the lights, not us, and requires a simple flip of the switch.