Editor’s Note: Lisa Volenec is an advocate for the Parkinson's community and active Team Fox fundraiser. She was diagnosed with Parkinson's disease at age 47 in 2014. An Omaha, Nebraska native, Volenec started her career in TV news, and today serves as general manager for KMTV, the Scripps CBS affiliate in Omaha.
The Arizona sun can be brutal, so it was no real surprise yard work left me a bit drained. Still, in triple-digit temperatures, I loved being a first-time homeowner. There was so much pride in this tiny house, and the mundane chores were my weekend accomplishments, even in the most extreme heat.
For years I would have my annual “sinus infection” that required a visit to my primary care doctor for an antibiotic. This time I decided to mention that one of those chores would often leave my hand shaking. “It’s probably nothing,” my doctor said, but he gave me the name of a neurologist to as he put it, “rule anything out.” I don’t even recall the neurologist’s name, but she did the tap, tap, tap we all know. I walked up and down a hallway and wrote on a piece of paper. It seemed to last just a few moments, although I’m certain it was actually much longer. With little questioning, her conclusion were the words: “early onset Parkinson’s, and progression will be quick.”
This woman must be out of her mind, she didn’t know me, how could she know this? My mind started running through a million questions. There were no actual medical tests, or scans. It felt like a big mistake. I walked out angry and frustrated.
Her words nagged enough that I made an appointment at the Mayo Clinic with a movement disorder specialist. It would take several months to be seen by a specialist which worked quite well with my denial. I told no one — not even my family.
When I finally saw the man who became my long-term neurologist, there was again, the same tests — the tap, tap, tap of my fingers, again with my feet and the same hallway walk — now soon would become routine. This time, I assured myself that I was better prepared. I was going to “pass” the tests. As a long-time journalist I could ad-lib at any moment, and the tally light was on. This was just another “on-air” moment.
Looking back, it was as silly as trying to pass a sobriety test after an all-night keg party.
September 17th, 2014. The day of my true diagnosis. It was the same as the first, but this time, there was no fight. Deep down I knew. Tears silently poured down my face. My body went numb.
The desert sun piercing my skin like needles as I walked to my car was a welcome feeling. I desperately needed anything beyond the gut punch of a diagnosis I couldn’t begin to process.
As a single woman trying to climb a new corporate ladder, there was no choice but to remain silent. For me, it was silence and secrets for the next decade. I’ve now come to learn; it was the prison cell I chose for myself.
Would I have the same career opportunities, promotions, or praise had I been honest from the beginning? I won’t ever know.
Hiding Parkinson’s became almost harder than having the illness. Secrets create so much unnecessary shame. Shame always has a way of bubbling up to a point where you can’t hide any longer. I knew when it became a breaking point, and that breaking point was actually a breakthrough.
The more I shared, the more love and support showed up in ways I could ever have anticipated. Authentic connections are impossible without honesty. Vulnerability actually gives me incredible inner strength, even as the physical seems to slip away.
Owning my truth years later has been a miracle. It has been life changing. Talking to other patients is more healing than any dose of dopamine. My heart is full anytime someone reaches out, and it helps me find my purpose. It doesn’t mean I’m happy to have this illness, it just means it doesn’t get to hold me captive any longer.
I have to believe there are so many others living in fear, in silence, imagining a very dark and uncertain future.
My prayer is that you read this, dig for faith, and pick up a phone. Use your voice, there are thousands standing by.
Editor's Note: Check out The Michael J. Fox Foundation’s resources for people newly diagnosed here. And know that you’re not alone in Parkinson’s. Some people find support by talking with a loved one, and many find it helpful to connect with others through support groups and online forums such as the Parkinson’s Buddy Network or even exercise classes. Learn more here.