Nicole: PD at 43; brain surgery at 49

My name is Nicole Riina,  previously known as Nicole Archer. This is my story.

In March 2017, I was diagnosed with Early Onset Idiopathic Parkinson's Disease. That means that there is no genetic, environmental, or physiological explanation for why I have it. I was 43 years old with a 4-year-old little boy who is my world.

I started showing symptoms in 2013, after having my son. Initially, my doctors said it was stress. Then they said it was residual side effects from an ocular migraine I had when I was pregnant. Then, in 2016, a highly respected now-former colleague suggested that I had Parkinson's. It took another year of doctors’ appointments, tests, and evaluations before they confirmed what my colleague had already known.

It's been a struggle over many hurdles, physically, mentally, and emotionally, but in March 2021, I decided to do things my way and Own My PD. With the love and support of family, friends, and co-workers, and after a year of trying weight loss alone, I joined CrossFit to begin the physical part of managing my disease. My coach, Alexis, has been a fantastic support, and with her help, I let go of my cane after less than six months of hard work. I continue to make strides through CrossFit.

However, in October 2021, my doctors and I admitted the reality of my situation - that my medications are not working. Since then, I have undergone numerous tests, evaluations and assessments to determine my eligibility for the next step in my journey. In July 2022, I am undergoing brain surgery called Deep Brain Stimulation (DBS). DBS will help delay the disease’s progression and reverse the debilitating symptoms of Parkinson’s Disease that have had a hold of my life for the last five years and return to me the quality of life that I remember before my diagnosis.

The surgery will occur at Mt Sinai in NYC and is a 3-stage surgery. In the first two stages, electrodes will be implanted. In the third stage, I will have the equivalent of two pacemakers implanted in my chest cavity that will attach to each electrode. The purpose is to provide electrical impulses to my nervous system to stimulate my receptors to receive messages from my brain that otherwise get "lost in transit." My goal is not to be in a wheelchair at my son Joey's high school graduation in 2031. Instead, my expectation is an improved quality of life.

The biggest hurdle I now face is the expense. DBS costs between $60,000 - $100,000, depending on the type of device implanted. My insurance is disputing whether I actually have PD and is currently denying all related expenses.

My hope with this GoFundMe request is to offset some surgery costs. Any amount you can give would be so greatly appreciated.