Devastation
I never in a million years thought I would be diagnosed with young-onset Parkinson’s Disease at the age of 38, in the prime of my career, and with 4 year old twins. I won’t lie and say I wasn’t devastated. I just wanted to get in my bed and pull the covers over my head, and never come out.
But what good would that do?
Action
I have always been a person of action. I have been told many times in my life that maybe I’ve bitten off more than I can chew with some of my wild ideas and projects. Or as some friends tell me, I live in “the Jarvis bubble,” where I truly believe anything is possible! So I had to do something.
I started my foundation, the Nicole Jarvis, M.D., Parkinson’s Research Foundation, Inc., but it’s not really about me. It’s about our community always rallying together to support each other to accomplish things that need to happen. I really can never express my gratitude enough for the kindness and generosity of this community that is really like a big family. When I first started, I personally went to over 100 businesses pitching my idea. I brought cookies and left notes and just kept going every day, meeting more and more people that wanted to help and who offered great ideas and contributions.
I absolutely want to find a cure for Parkinson’s disease, but in working on that goal I’ve found so many other things that I need to work on. For example, everyone should be treated equally and have access to healthcare, insurance, patient services, and entree to every possible treatment. Unfortunately, this isn’t the case; and not just for PD, but for all aspects of medicine. PD and other health issues affect people of all ages, races, genders, financial statuses, geographic locations…I could talk for days about this. And PD isn’t going away anytime soon. In fact, its rate has doubled since 2000 and is expected to double again by 2030. It is the 14th leading cause of death in the US, and the annual economic burden is over 14 billion dollars. It’s a daunting task to think of how to change these things. But if you don’t try, there certainly won’t be change!
Determination
My boys are almost 12 years old. In a way, I am glad that they were so young when this all started. They haven’t had to adjust to PD as I have, or as my other family, friends, coworkers, and patients have had to do. Team Fox (Michael J. Fox Foundation) and “Mom’s Foundation” (which I established in 2013) have essentially always been a part of their world, and they see it is as a normal part of my “job.”
I like to think that they also have an appreciation for the importance of helping others, for science and research, and that they truly are a part of changing what this disease will look like in the future. I might be overreaching a little bit with that right now, but I know for sure that when they are older they will be able to be proud of what they have helped to accomplish.
I won’t lie and say I wouldn’t change things if I could. I absolutely wish that I did not have PD. My life has changed so much–some things are better, and some are not. But, I have met many amazing, strong, brave, brilliant people on this PD journey that I am now so thankful to call my friends.
And here we are, 8 years later, having raised over $1.6 million for Parkinson’s research and over $130,000 for local patient services! We host Oklahoma’s only Team Fox event, our annual Winter Gala, in support of the Michael J. Fox Foundation, which helps fund the research that is so vital to developing improved treatments and, ultimately, the cure we desperately need for this horrible disease. I try each day to contribute something positive to help raise awareness of PD and of how it impacts the lives of patients, our families, and the world around us, both locally and at a global level. And hopefully, I play at least a small role in changing what the future of this disease looks like.
When you think about it, every single person will be faced with some type of challenge in their lives. But you really can turn those challenges into helping yourself and others in the same boat with you. Whatever your challenge may be, educate yourself about it and then find a way to get involved with improving your own life and the lives of others dealing with the same challenge. You really can change the face of the future!
In the meantime, I won’t give up, and I hope you will all stick with me, too!
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Photo by Ravi Roshan on Unsplash