My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
We all have a story and, very likely, can vividly recall how it was when we first learned that we had Parkinson's disease.
HI! My name is Carol Simons and I was born and raised in Cleveland, Ohio, graduated from Miami University where I earned a Bachelor of Science degree in education and met and married my husband, Tom. I taught for four years until our first child was born. We have 3 children and 9 grandchildren—3 in Crested Butte, Colorado, 3 in Columbus, Ohio and 3 in Charlotte, North Carolina. We do a lot of visiting!
Let me take you back to the spring of 1992. I felt fine; I was 45 and looked healthy and strong. I was very active in home and community projects.
I only had a tiny tremor sometimes in my right little finger that my neighbor, a doctor, had noticed and, with concern, alerted my husband to have me check it out.
I let 3 months pass before I finally met with a neurologist and was told I had a chronic disease—a condition called Parkinson's disease— not terminal, but a nuisance in my life. He directed me to come back in 3 weeks with my husband to further discuss my diagnosis.
I think, one thing we all have in common after we hear “Parkinson’s disease” is a tremendous feeling of devastation.
I was totally ignorant of how to deal with what I came to view as an intruding monster in my life. So, after a healthy cry, I decided to exercise harder to beat it and to go to the library to learn everything I could about it. Unfortunately I found only old encyclopedias to educate myself.
The 3 weeks passed. My muscles were sore from exercising so much and I was sure from reading those old books that I would be dead within 8-10 years and might not even get to see our youngest child graduate from high school. How very wrong I was.
3 factors came into play that had a profound effect on me:
my doctor's words
my husband's reaction and support
and my faith in a caring God
My doctor told me that every person with PD was a unique case making it a challenge to treat. My symptoms looked to be classic PD which advanced very slowly and my symptoms were so slight, I didn't even need any medication initially. But I needed to work with him to tell him when my symptoms were interfering with my activities so we could add or adjust medications. Lots of neurological research was happening and new medications were being developed. He said to focus on the positive: positive people, positive research, positive activities. Then he said I may need more sleep, less stress and daily exercise, and that the exercise was extremely important. In fact, the days that I didn't feel like doing it, would be the time I needed to exercise the most. And I most likely would live to a ripe old age, so fear not.
Then there was my husband's reaction. His hugs and interest in learning with me were priceless. He advised me not to tell anyone for a while, so we could see how my symptoms progressed and to learn as much as we could about PD so when we began to tell others, we would be able to answer their questions. He also was fearful of others becoming uncomfortable about being with me and my loosing relationships with family and friends.
And the 3rd factor for me was my faith. To start with, I have a core belief that each of us is here for an important reason and we will be given happenings in our lives for a reason and we need to be open to God, our higher power, for wisdom, knowledge, and direction. I had a spiritual director through my church who patiently listened to me release my anger and fears to God and encouraged me to ask questions of God and expect answers. So I began to pray, specifically focused on my new condition, early in the morning at home, sitting on the floor of our walk-in-closet at 5:30am daily. I questioned and demanded answers and even asked to be healed for His glory. A couple weeks passed and then one morning as I sat quietly I received a clear message like a ticker tape through my mind and it said, “Don't worry. I am in control. Just walk through the doors that I open, and allow others that I chose to close, to close.” A very peaceful feeling came over me. I felt as if I was wrapped in unconditional love. What a tremendous relief; what a tremendous feeling! I continue to hold on to those words and to that experience.
The more I thought about it, the more sense it made to me to focus on wellness instead of illness! 2 years passed and I decided to call the UC Parkinson’s center with a question. During the call I was invited to attend a newly formed young onset support group. That was the beginning! I attended and offered to volunteer. Volunteering turned into a part-time job and for 14 years I helped in the UC Neurology Department answering calls from 4 states, sending out APDA material, facilitating 3 support groups and teaching the community about Parkinson’s disease through presentations. I had the opportunity 20 times to travel to Washington DC to take part in the seminars and congressional visits of Parkinson’s Action Network, a grass roots organization that did advocate work for increased brain and Parkinson’s research funds. This group is now a part of the Michael J. Fox organization.
I learned tons about Parkinson’s disease during that time and I continue to learn and to be involved in our community, always prepared and patiently waiting for a cure!