My actual story unfolded very slowly over the past 15 years. In the four years prior to my deep brain surgery, which was performed early this year, I had fired two Neurologists for not meeting my treatment expectations. I was medically like an inactive and sedate 60 year old man. I met my current doctor, a motion disorder neurologist, at a Parkinson’s symposium in Seattle three years ago. She and her team at the Booth Gardner Parkinson’s Care Center at Evergreen Hospital have been at the forefront of Parkinson’s treatment and actually specialize in Young Onset of Parkinson’s Disease.
With her team’s help, I have maintained a level of activity through surgery and medicine that allows me to continue exercising, continue most of my hobbies, and develop new personal goals despite having Parkinson’s disease.
With that being said, I did, early on, have days where I’d wonder “why me” especially when my symptoms were wearing me out. My symptoms were not so much the well known shaking, but more along the lines of my body freezing in place, stiffness and slowness in that I can’t walk in crowds, my face becomes flat and expressionless, and I have problems talking especially with mild slurring of words but more frustrating is my inability to find words.
While most days I appear normal, when stressed either emotionally or physically I exhibit these symptoms along with anxiety, panic, and most recently depression which is believed to be primarily due to a medication side effect. My care team (medical and familial) is helping me with my meds, mobility, and motivation. I’m not allowed to have “Pity Parties” longer than 5 minutes.
Like Michael, I enjoy a mostly positive outlook on life; remain optimistic, and hopeful that in my lifetime this disease will have a cure. On the other hand, I am grateful to have Parkinson’s disease because I have given myself the freedom to ask for help and allow people to help me when needed. There are times when I forget to ask for help when I need help and people, especially strangers, get short with me especially in lines at stores.
This year I had to retire from working due to my inability to drive, work overtime, handle after hour trouble calls, and problem solve in highly stressful, time sensitive, and at times life threatening situations. The negative effect on my Parkinson’s symptoms was too great. I’m still trying to replace the time I used to spend working with something I enjoy as equally.
This process of giving something up and replacing it with something else is about par for the course with Parkinson’s. When people give something up, due to the disease, and don’t replace it with something of equal reward value, that’s when Parkinson’s wins. Michael J. Fox refers to Parkinson’s as the “Gift that keeps on taking.” As long as I remain sharp, keep learning, trying new things, and talking to people, I might be able to actually “out option” Parkinson’s long enough for someone or group to make that one door opening discovery that we PWPD are all waiting for.
That’s enough of the informative and motivational philosophy that keeps me going. Now, as promised I owe you some work on the script, which I am starting now…..
