30 Days of PD: Learning to Afford Myself Patience and Grace

Photo courtesy of Nikki Louiselle

Day 25 of 30

This is Nikki Louiselle’s story:

Nearly 4½ years ago, on Nov. 7, 2017, I heard words I was completely unprepared for… words that weren’t on my radar. “You have Parkinson’s disease.”

As with almost any medical diagnosis, age, it turns out, is just a number. Parkinson’s didn’t care that I was only 45 at my diagnosis — with four amazing and extremely busy teens to keep up with, or a job I adored and took great pride in doing each day.

Parkinson’s. Didn’t. Care.

But let me back up a bit. In September 2016, I noticed I was feeling extra-fatigued and experiencing joint pain. I assumed I was coming down with a cold. The symptoms continued, even intensified, but no cold ever settled in. In February 2017, I finally made an appointment with my primary care doctor. Initial lab work indicated elevated autoimmune markers, so I was referred to a rheumatologist.

As I waited — eight long months — for that appointment, I began having new symptoms I assumed were also autoimmune-related. My primary disagreed and referred me to a neurologist. I waited until after my rheumatology appointment, hoping the doctor would say I didn’t need it.

But rheumatology agreed with my primary. I was moved up the priority list and, three weeks later, had my first neurology appointment.

I had prayed for answers, even if they were difficult. My symptoms and clinical exam were so definitive — “textbook,” the neurologist said — I got answers at that first appointment. But that answer, a Parkinson’s diagnosis, was so very difficult to hear. I was completely blindsided.

In the years since, there’s been progression, as expected, in my disease.

I had to resign from the job I adored. I’ve stubbornly learned to plan for “recovery days” after any activity days. And, I’m slowly becoming okay with having to use a walker on tougher days.

But I’m also learning to afford myself a little more patience and grace. After all, I have four children watching me.

I want them to see me fight this disease and its challenges head-on. I want them to see me make a difference. I want them to see me take this diagnosis and make it meaningful.

Parkinson’s News Today’s 30 Days of PD campaign will publish one story per day for Parkinson’s Disease Awareness Month in April. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPD, or read the full series.