Coping with a Parkinson’s diagnosis

Jamie Fobert
Jamie Fobert

The details of the moment Jamie Fobert found out that he had Parkinson’s disease at 40 are etched forever in his mind. “I heard the words Parkinson’s disease. I looked down at my watch; it was 10:20 a.m., June 30, 2010. The doctor was wearing a dark dress shirt and khakis. I was bent over, my head down, my elbows on my knees and then it was a blur. The doctor kept talking, but I wasn’t hearing much.”

As a fit, active person, the young-onset Parkinson’s disease (YOPD) diagnosis was a shock. His eldest son first pointed out that he wasn’t swinging his right arm while playing soccer. Subsequent consultations with his family doctor and sports medicine specialists led him to that fateful appointment with the neurologist.

Fobert sobbed during the entire two-hour drive home to Belleville. Over the next few days, he shared his diagnosis with his family and his employers while trying to get on with his life.

Soon after, Fobert made a life-changing connection. He met Stephanie Bruder while she was volunteering at a fundraising event for Parkinson Canada in the local drugstore. Bruder, who also has YOPD, introduced him to the local Parkinson’s community, including a support group. “She’s a small person with a giant heart,” says Fobert.

A two-hour conversation with Bruder and Robert Brown, another local man living with Parkinson’s, did wonders for Fobert’s outlook. He began to understand the words: “I have Parkinson’s. It doesn’t have me.” He realized that living with Parkinson’s, he would be challenged to “step up or step aside” and he chose to step up.

Fobert continued and even increased his physical activity, playing soccer and lifting weights. He takes his medications and physician-approved supplements and monitors his diet and schedule. That’s not to say, he doesn’t slip up sometimes. “One morning I ate a new breakfast cereal without realizing it contained a lot of protein, which can inhibit the absorption of my medication. I was frozen at the kitchen table for quite some time, until my youngest son came by and helped me out.”

Fobert also made some tough decisions in his personal life. His marriage ended. He is now engaged to Beverly, his “true partner.” Between them, their family now includes 21-year-old twins, a 26-year-old son and a daughter-in-law, a 12-year-old son and a seven-year-old granddaughter. “It’s so much easier to live with Parkinson’s when you are supported by good people, who love you. I’m very lucky to have that,” says Jamie.

As a career caregiver working with children and adults with developmental challenges, it didn’t take long for Fobert to seek ways to help others. “I found out I had a talent for getting others to give; if not money, then supplies for our events.” Fobert helps organize events for Parkinson Canada and speaks to media and the public about living with the disease.

He recently became a “partner” for Parkinson Canada’s Life Lists Challenge, a new initiative this year. The Life Lists Challenge inspires others to raise funds while they undertake rewarding bucket list activities like skydiving or zip lining. The partners, all living with Parkinson’s, help to motivate participants in pursuing their adventures and their fundraising.

In his online profile for Life Lists Challenge, Fobert writes about his Superman tattoo. He refers to it as his “inner strength symbol,” explaining that most days Superman is simply Clark Kent, but Superman appears when extraordinary strength is needed. “And some days I need that inner strength when living with Parkinson’s.”

“I believe I have a responsibility to live every day to the fullest, and to not take anything for granted,” says Fobert. “A cure for Parkinson’s isn’t just going to happen; we need to go after it.”