January 4, 2016 - This was written 4 years ago & is part of my story as to where I'm at today.
Dear Parkinson’s,
It is our 18-year anniversary this week. I had been 29 for just one month when you let your awful presence be known, lurking within my body. I certainly did not invite you to live with me. In fact, if I could file a restraining order to make you stay away from me, I would. Sadly, that is not how our relationship works. You just bullied your way in, and here we are - still together. It is with great dismay that I have been forced to learn how to coexist with you for the last 18 years.
I am not a competitive person, but I am giving you fair warning that someday I plan on winning this battle and will gladly kick you to the curb at the first opportunity. I still have many good days, along with some bad days, and a smattering of absolutely miserable days. I’ve seen the pain in the eyes of my family members as they have watched you ravage my body over the years. But, as long as I have the strength and intestinal fortitude, I will fight you tooth and nail for as long as my body and brain will permit.
I can, and still plan to, go running and hiking, ride my exercise bike, clean my house, shovel snow, and play my piano. I choose to do these things not because I have to, but because I still can. I am fully aware that someday my muscles and joints may not permit these activities, but until then, I refuse to let you dictate what I can and cannot do.
My life has become all about adapting. You wear me down, exhausting my muscles and frustrating me mentally, so, I rest and take breaks more often than I would otherwise. I spend this down time brainstorming how to accomplish my everyday activities that you otherwise make impossible. Instead of focusing on what I cannot do, I try to come up with alternate ways of doing tasks to make my life as normal as possible.
Lately, you have been interfering with my balance and making it difficult for me to walk properly. If I do much walking over the course of one day, I am in excruciating pain by evening. The good news is that I have an amazing group of physical therapists with whom I have worked for 15 years! With their help, I can retrain my muscles to walk correctly, which in turn improves my strength and balance. As a result, this lessens my pain and, thus, your hold over me.
Additionally, I have discovered that eating certain foods seem to make me feel worse and enable you to rear your ugly head more noticeably. By avoiding prepackaged, high-sugar foods, I avoid some of the physical pain you bring to our relationship. Plus, you are not a huge fan of exercise, but I am. My schedule includes daily exercise, though most days it’s typically 2 to 3 times per day. Since you are always in my head, though, exercise permits me a welcome mental break from you - effectively distancing my thoughts from you so I can concentrate on the more important aspects of life.
Recently, while at Yellowstone National Park, I discovered I could achieve relief from you temporarily while I am at higher elevations. For me, 6500 feet or higher is the magic number at which my inflammation and pain diminish to the point that I can run, jump, and skip with relaxed, coordinated muscles. Much to my amazement, I also discovered that the old me—whom I thought had died when you moved in—is still very much alive. Yes, despite your dark, unrelenting persistence, the old me—the real me, buried deep within - is patiently waiting for me to evict you. This knowledge gives me a tremendous sense of power and hope.
I have a friend who, on several occasions, has asked what I know tomorrow will hold. In the past, I have answered that I know tomorrow I will still have Parkinson’s. Tomorrow, I know a little bit more of my brain will be destroyed by Parkinson’s, and I cannot stop it. Tomorrow, I know I will still have physical pain from my illness. But, it is a new year. And with a new year comes resolutions. My resolve is to put a positive spin on this haunting question. So, with that, I know that tomorrow I will be one day closer to a cure.
I am positive it is just a matter of time until you and I part ways. There is an entire group of people—none of whom knows me—working tirelessly to eradicate you from me, and from the millions worldwide who share their bodies with you without consent. The Michael J. Fox Foundation, which unites brilliant and passionate researchers from around the globe to seek a cure for this disease, has also created a community for families affected by Parkinson’s. Additionally, this foundation offers me the opportunity to participate in research trials. By providing insight and details of how you affect me to their vast database of knowledge, I can help advance the obliteration of you. I have eagerly taken part in several studies and consider it to be my small contribution to help science. Although I have recognized that I cannot beat you by myself, this organization gives me the comfort of knowing that I don’t have to.
As an illness, you no longer scare me; therefore, you no longer have control of me. Because of you, I have developed the ability to recognize people afflicted with Parkinson’s, along with a desire to do my best to assist them if they appear to be struggling because I understand their daily torments. Those with Parkinson’s are proud people and wish we did not have to ask for help. I am so very thankful for the network of support that the Michael J. Fox Foundation provides, and for the continual help and support of my family and friends. I know the role of caregiver is incredibly arduous. The loved ones in my life who help me are so willing to assist with even the most tedious of tasks. I dream of the day when they no longer have to help me because of you.
I dream of the day when my neurologist excitedly calls me to share news of a cure for my body.
I dream of the day when I no longer have to coexist with you—the day that you are gone for good.
And I know this day will be here soon.
Elaine Olson
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