FIRST COAST PARKINSON'S RUN

The First Coast Parkinson's Run is an honor to my mother Lorraine Hollinger. It is the culmination of my family’s loss, hope, and strength throughout the last 10 years. It is the only way I know how to memorialize her life and ensure the lessons we learned from her experience with PD may be passed on to others.

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The First Coast Parkinson's Run was a dream of mine for years before the start of my friendship and partnership with Co-Founder Dr. Odinachi Oguh. In 2005, I moved my family to Florida in hopes of helping both my mother and father recover physically, mentally, and financially from a series of ailments including what doctors thought was anythng but Parkinson's. Never would I have expected that within a year from then, my mother would be diagnosed with Parkinson’s (at the age of 56). The diagnosis itself wasn’t the hardest part - it was the impact that the additional diagnosis of Lewy Body Dementia took and would continue to take the most from our family.

 

To lose control of one’s body is painful and life-changing, but to lose control of one’s mind as well is incomprehensible. To see my amazing mother lose her greatest assets, intelligence and wisdom, was mind boggling. To watch a loved one diminish in mind and body is overwhelming. My mother’s decline was rapid, my father had to transition into a primary caregiver, and my sisters and I managed to process, experience, observe, and assist our parents with all that this disease threw at us. As a daughter, it was heart wrenching, and on many days, being numb to the disease was the only way I could keep moving forward. Throughout my life, moving forward meant doing something. Taking action.  I do not sit still; I do not leave room or time to think about the “bad”, the “loss”.

 

I had been faced with a number of hardships throughout my life, and my solution was always to act, to find a way to make a difference. My mom losing herself was another challenge that was not going to change my way of coping. Parkinson’s had already taken my mom, it was not going to take me. In 2012, I was nominated, unbeknownst to me, for the Jacksonville Business Journal Women of Influence award. A peer, a fellow VP of my company, nominated me and through some form of evaluation, the Jacksonville Business Journal agreed with him and chose me as one of the 2012 Women of Influence. When notified of this award, I was overjoyed, very surprised that my peer would recognize me and amazed that I was perceived in such a manner. All I could think was “but I hadn’t even figured out how to hold my Parkinson’s Run…how could I even be considered influential …they haven’t even seen what I can do”. I felt unworthy. During my acceptance speech, I mentioned the fact that I hoped to one day hold a 5K for Parkinson’s. My mother was not in attendance as Parkinson’s had made events such as an awards ceremony, virtually impossible to attend.

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My mother’s condition continued to deteriorate. The disease had a funny way of tricking us. She would plateau and we would adjust to her at that state, and then a sharp decline would occur and nothing would be normal again. The the new normal would again set in and we would be adjusted. The beginning of the final decline went hand in hand with a life changing conversation. I had finally gotten the courage and timing right to approach my mother’s new neurologist (Dr. Oguh) regarding her sponsoring or involvement in a possible 5K. The hope was that she would just hear me out, maybe provide some support. So for my mother’s next appointment, I chose to arrive early in hopes of speaking with her physician beforehand. The Universe is kind and harsh…and sometimes kind simultaneously. While Dr. Oguh listened to my hope of planning a 5K and she explained that she too had wanted to plan a 5K for Parkinson’s, my mother got off on the wrong floor of the hospital, fell and broke her hip, and confirmed she was in one of her steepest declines thus far.

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Throughout the next year, Dr. Oguh, Karen Perrin (my mother's nurse and Dr. Oguh's Clinical and Research Coordinator), my family and I created a team, planned a 5K, and in January 2014 held the Inaugural First Coast Parkinson's Run. My mother was pushed by our family in her wheelchair.  She was overjoyed and cried through her small bits of clarity. She met so many people who had Parkinson's or affected by Parkinson's. She had always believed she was alone. She finally was not alone. In December 2014, my mother was rushed to the hospital from the nursing facility where she then resided due to her advanced dementia and inability to move. We were told that day she would not live another 2 weeks. 10 days later she passed in hospice as our entire family hugged and cried with her.

 

My family endured so much. We lost so much. This next phase of our life has been bitter sweet, we have found that there are so many others affected by PD, which breaks our hearts. Yet, we have found that meeting these people, joining in the fight for a CURE, finding resources for people TODAY, and UNIFYing to support patients and caregivers, brings us peace, joy, and therapy, I have found a way to rejoice her and those afflicted with a disease so unknown, so under publicized. I truly believe that the voice for Parkinson’s must be louder, must be stronger, must include HOPE. 

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~Jennifer Otero

   Co-Founder and Race Director

   First Coast Parkinson's Run

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