Melissa Livingston

Member for

3 years 10 months

I started with symptoms of Parkinson’s in late 2016. I was 41, a working single mom with a 3- and 7-year-old. I was dating someone new for about a year. At first it was just a weird cramp in my right arm that felt a little bit like tendinitis. It made sense to me, as I spent hours editing images at my job, so my hand was often crabbed up on a mouse.

Melissa LivingstonI didn’t have health insurance at the time, so I put off going to the doctor. In the back of my mind, I thought Amyotrophic lateral sclerosis (ALS), Multiple sclerosis (MS) or Parkinson’s disease (PD). I was terrified. By the time I finally visited the doctor, I had developed a tremor in my right arm, a strange cramp in my right calf that caused a limp, and lost my job. It was Valentine’s Day 2017 and my new general practitioner hit me with MS as a possible diagnosis.

That would be the thought process until 2020, when a new neurologist diagnosed me with Young Onset Parkinson’s (YOPD). I was devastated and in denial. I left the office thinking I’d end up dead in 14 years like my grandfather. I went home in a fog of tears and confusion and proceeded to break my family’s hearts one by one. My oldest children, who are 27 and 26, were in denial, refusing to believe it. Two days after I was diagnosed, I caught my boyfriend cheating on me. My life had crumbled.

I quickly learned, through research from the Parkinson’s Foundation, that my diagnosis was not a death sentence. I obsessively looked up life expectancy, prognosis, treatment and disease progression. I started to work out more to combat the side effects of my new medications, and because it’s the best thing for me — then and now. The medicine and the diagnosis threw me into a series of panic attacks that I had never experienced, gave me blinding headaches and made me nauseous beyond belief.

Slowly, slowly I rallied. The medications allowed me to wiggle my fingers and move my locked up hand freely for the first time in years. I could put my girls on the bus and wave goodbye. I could write a shopping list. Small victories.

I found a Movement Disorder Specialist who helped me tweak my treatment. I let go of the hurt of a toxic relationship, started a book of affirmations given to me by someone special, surrounded myself with positive thoughts and people. I was evolving — I still am, but I’m not the same person that walked into the neurologist’s office a year ago. I’ve made dozens of connections and friendships with YOPD warriors like myself. We fight, every day, to have just one more good day.

I don’t worry too much about the future anymore, I don’t cry when I think about what’s to come, because I’m too busy living, loving and fighting to go back to that dark place.

The one thing this diagnosis has given me is the perspective that life is short and always changing, we roll with the punches. Every day is a gift no matter the outcome and there are so many small moments of great joy to be had. I fight for this and for my children who deserve a mom that inspires.

I work my hardest, every day, even on the most challenging ones to be that person.

Learn more about Young Onset Parkinson’s disease at Parkinson.org/YOPD and consider joining our PD GENEration: Mapping the Future of Parkinson’s genetic study today.

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