I was diagnosed with Parkinson’s disease (PD) five years ago and am still learning how to fit this malady into my life.
My experience? Well let’s just say I came out of the gate swinging; I wasted no time. I immediately signed up for a research project looking at walking with music, hired a personal trainer, went on medication, and had my first few experiences with extreme exhaustion until the correct cocktail of prescriptions was found. I was coping with the anger that my body had betrayed me, but at the same time I also felt very blessed that I was diagnosed at Stage 1.
You often hear the statement, “without your health you have nothing.” I try to wrap my head around this quote often. Does having PD mean I now have nothing? I prefer to live by the statement that “difficult roads often lead to beautiful destinations,” some that I have already arrived at with many more to explore.
I share my experiences of living with PD with the hope that more people will understand that it is so much more than what you see on the outside. It is more than the tremor on the right side of my body, more than my toes painfully curling under on my right foot, more than my right arm that no longer swings when I walk, more than the slight waiver in my balance and more than the hesitation I take before I go down a flight of stairs. These are just the outward symptoms that people associate with PD and that are so often used by others to evaluate how they think I am doing.
There are also a multitude of unseen symptoms that I battle, that at times are much more bothersome and debilitating than any visible symptom. Internal tremors, rigidity or stiffness, nightmares and difficulty sleeping, restless leg syndrome, anxiety, inability to get comfortable when sitting or lying down, memory problems, and at times, apathy.
My most bothersome at the moment is having a terrible time sleeping (even with medication) and these bouts of insomnia lead to exhaustion in the middle of the day. Ahh, to have a peaceful night of sleep. This is something that eludes me, and I am not talking eight hours, a mere five or six hours of interrupted sleep would be welcomed with open arms. But I know I am not alone in this battle. There are many PD warriors that battle with other symptoms I have not yet experienced, and those I have, like sleep.
The upside: a 3 a.m. group chat can easily be arranged last minute.
Accepting that I have PD is one of the biggest steps I have taken to bring some peace into my life. I don’t want you to think that acceptance means I have become complacent with PD. To me acceptance means understanding that PD is going to be with me for a long time, so I need to decide what kind of life I am going to have alongside this disease.
If left on its own it can take away from my personal relationships, my confidence, my belief that I can continue with a career, my favorite hobbies, and my passion and excitement for life. It takes as much as I allow it to take and until I decide to do something about it. This means that I accept PD as part of me, but I also fight back with unwavering determination.
Fighting back means to continue learning about PD; how it works, how it affects my body and how I can keep moving forward in this battle against it. PD is part of me, but it does not define me.
“Colleen is a warrior who is optimistic, kind, and loyal,” I remind myself often in my continual battle.
I would be lying if I didn’t say that some days are harder than others, but these are the moments I am tested. I make the conscious decision to fight back like a skilled warrior.
When I was first diagnosed, I came in the arena with one plan of attack, since then my symptoms have changed, I have been forced to look for alternate routes to victory. I research more, find new allies, regroup and develop a new plan of attack, but always move forward.
This is a small introduction to my story, my battle. I welcome you into my army of warriors, and want to offer you any support I can along the way. I am Colleen and I have PD.