I am a Warrior
Diagnosed at 45
In 2002, at the age of 45, I was in full stride as a wife and mother to two daughters. An active participant in our community, I served as a communicant in my Catholic church and was dedicated to my excellent work as a speech language therapist to children with special needs. An accomplished seamstress, I made much of my own clothing as well as my daughters’.
I had always been athletic (a former tri-athlete and soccer player two to three days a week), so beginning in 2001, I noticed immediately when my left arm stopped swinging normally. I had broken my right arm the year before in a soccer injury, but when my teammates began asking about my odd running gait on the field and assumed it was because of my prior break, I began to take it more seriously. I kept procrastinating, because I feared the necessary MRI. After I slammed my slower-moving left hand in the van door while putting my kindergarten-aged daughter in her car seat, I knew something was seriously wrong. The two sides of my body were not working in synch.
I had no visible tremor of any kind, but for years had fought depression and anxiety that began spiraling into panic attacks without reason. Alone in my neurologist’s office that day, I remember seeing her sprawling handwriting on the sheet of paper spelling out her diagnosis and treatment plan. I was shocked, but called my then husband and had to convince him to meet me.
When I tearfully told him at our local coffee shop, he reached across the table and replied, "We are in this together." But this was the last we were to speak of it until I left two years later. Our marriage, never very intimate to begin with, began to feel the brunt of my mood states, and my reaction to the the dopamine agonist I was originally prescribed. In 2002, the pharmaceutical companies making dopamine agonists warned only of gambling as a possible side effect. No one emphasized the possibility of personality changes or hypersexuality/obsessive computer use as a potential danger. I was in too much denial and embarrassed to introduce it in our marriage counseling sessions.
Sometimes I look around me and wonder how I got here; Today, at age 55, I would handle the whole early period of Parkinson’s disease differently. I would recommend to anyone newly diagnosed with this devastating disease to seek good counseling support for their primary relationship, financial planning for an uncertain future, and most importantly, if on a dopamine agonist, to honestly tell their doctor and partner if obsessive behaviors increase. (The shame of the abnormal behaviors can make it difficult for people with PD and their caregivers to discuss and see them as a symptom not of the relationship, or the disease, but the medications.) I personally think these side effects are under-reported, even today.
The diagnosis of PD is tough on any relationship. Be aware that many symptoms of PD such as facial masking and nonverbal language issues can make your partner feel as though they are being taken for granted. Be very careful to appreciate all that your partner deals with and make sure they understand this.
My work performance suffered with my increase in obsessive behaviors, and my school district did not honor my accommodation requests. I went on medical leave before and after DBS; then hip replacement surgery. I had to finally retire this past year. My private insurance disability covered only 60% of my previous salary. Worse, after I was granted SSDI (per their requirement), the insurance company considered that taxable income and took that off my monthly check. I now am also responsible for my monthly medical insurance premiums, in addition to my pharmacy and many medical co-pays. I will not be eligible for Medicare until June 2013. My mortgage is more than my current income and yet I cannot sell and move until my youngest daughter graduates high school in 2014. My current income is less than 30% of what it was when I was able to work. How many of us could live on 70% less?
I am single, dating, and have Parkinson’s disease, which I can no longer hide. (Try telling “your story” on a first date). Plus, I am finding my “BS detector” is no longer reliable and have found myself in more than one predatory situation. As a single woman with Parkinson’s disease I would caution others to beware that medications ~ and the disease itself ~ may make your judgment questionable. Use trusted friends and family to give you perspective and kind feedback. In lieu of this, find a counselor. I cannot regret my decision to leave my marriage, yet would caution others to do EVERYTHING they can to improve their relationships, including using brutal honesty, TODAY. Reconsider your ability to afford to live in an economy that allows disabled people to fall through ever-widening cracks.
I will never be the kind of person that will truthfully say “I feel blessed to have YOPD.” Yet, I agree with the saying, “Whatever doesn’t kill you makes you stronger." I am choosing to live my life well, setting goals, being an advocate for those who need my voice, my daughters are thriving, my garden is blooming, and I am a Warrior.