620 WTMJ’s Julia Fello was joined by her husband on-air to discuss his early onset Parkinson’s diagnosis, what it’s meant for their lives, how they’ve built support systems & the many ways they’re now trying to spread awareness on the topic.
Ahead of the Parkinson’s Foundation’s Moving Day event, Jason & Julia are raising funds to help the cause. You can help make a difference by following this link: https://secure3.convio.net/prkorg/site/TR/MovingDayEvent/General?pg=team&fr_id=5146&team_id=78670
MILWAUKEE — Around last April, my family’s lives changed forever.
Just a couple weeks before, my husband Jason had been handed this foreign pamphlet filled with information about this disease I was sure he did not have. “Parkinson’s?! Who IS this doctor?!”
‘He’s only 39m’ I thought. So fit. So young. WTF?
He went in for the brain scan and thought nothing of it. I would regret not taking off work ever since and being by his side. Even more, not answering his calls, as I was on breaking news as a television news reporter for the NBC affiliate in Milwaukee, Wisconsin.
‘What could he be calling about?’ I thought. ‘They said the results wouldn’t be back for days.’
Jason got the results back in no time. Within an hour. On his drive home. His MyChart app alerted him the results were in. (Under the Affordable Care Act, you as a patient by law, get all of your results. Immediately.) Among the terms that were written out by the radiologist were, ‘Abnormal’ ‘Parkinsonian Syndrome.’
At the end of my shift, I called my husband driving, waiting for the gate to open, and drove out of work. When he answered I asked, casually, “How did it go?”
Silence. “Just come home…”
My stomach sank. “You got the results didn’t you?”
Jason replied, “…Just come home.”
I opened the door to our home, to find my husband on the ground. Sobbing.
“How did it go?” (not knowing what else to say).
His face, red: “Not good.”
I dropped everything in my hands. Got down on my knees and listened to the most heartbreaking words, I never thought would come out of his mouth. He showed me on his phone, “There it is. Parkinson’s. My life is over. I’m only 39.”
First off: What a tough way to learn we had it. Yes, WE have it.
Second off: I need to step up. What is Parkinson’s, anyway?
Most cutting of all was when he said, “There is no cure.”
We were terrified, and had to wait to get in to see a doctor and finally learn the scary terms for Jason meant “Early Onset Parkinson’s Disease.” Organizations like the Parkinson’s Foundation were our North Star. We were able to get credible information about what we were about to face. Maybe most of all, to know that we are far from alone, and there is hope.
We have learned Early Onset Parkinson’s is far different from late onset Parkinson’s. The doctor we saw a few months ago at Mayo assured us Jason can and will live a long, fulfilling life well into his 80’s. Though there will be bumps down the road. We can still travel. He can still work and do all of the things he loves.
Our story is far from unique. 90,000 people are newly diagnosed in the U.S. every year. That means someone will be diagnosed with Parkinson’s Disease every six minutes.
Take a listen to Jason’s full story he shared live on Wisconsin’s Afternoon News at the top of this page. We hope you come away from listening to the hour-long special feeling empowered to never stop searching for answers if you think something is wrong with your health.
Allison Liefer, Senior Director of Parkinson’s Foundation Midwest Chapter, joined us to share more about the non-profit working to fund new research into this mysterious disease.
Parkinson’s Advocate Bob Bansfield also joined us on WAN to share his journey with Parkinson’s after he was diagnosed about five years ago. The most important message he and Jason shared was, “It’s not a death sentence. You can still live a full life. Keep fighting. Things will get better.”
Jason and I invite you to join them for Moving Day Milwaukee taking place May 18th at Hart Park in Wauwatosa. The walk begins at 10 AM. Click here to see our team page.
