Why we walk: Parkinson's disease can leave everyone 'feeling lonely and isolated'
When my husband Tim went for his annual physical exam in October of 2016, he expected to leave with a clean bill of health. However, a nurse practitioner noticed Tim's voice was weaker than usual and he was slurring his words. In our daily routine, these very subtle changes were not obvious to me.
Following that fall day, we searched for answers. We searched for nearly a year, seeing doctors and taking tests, but the answers eluded us. Frustrated, and frankly a bit lost, I turned to the internet for information, support and advice.
I explained our family's situation to others in a private Facebook group for Cary residents and I asked for recommendations for neurologists. A member suggested we make an appointment with a movement disorders specialist at Rush University Medical Center in Chicago.
Immediately, the team at RUSH suspected Tim, who was only 44 years old, had Young Onset Parkinson's disease (YOPD). In September of 2017, they confirmed the diagnosis. Finally, we received answers; not the answers we were hoping for, but with the new information we could develop a plan to help Tim improve his quality of life and live well with the disease.
YOPD affects about 2% to 10% of the 1 million people with Parkinson's disease (PD) in the United States. According to the Parkinson's Foundation, PD is a neurodegenerative disorder that affects predominantly dopamine-producing neurons in a specific area of the brain called substantia nigra. The cause remains largely unknown and currently there is no cure.
Parkinson's can leave people living with the disease and their caregivers feeling lonely and isolated. I continually depend on the online community of people with PD and their caregivers. Recently, when Facebook group members posted about Moving Day Chicago, a walk to benefit the Parkinson's Foundation, I was intrigued.
I researched the event and the foundation and recognized Moving Day Chicago would be an ideal opportunity for our family to support Tim and raise funds for care and research.
He inspires us as he faces Parkinson's with courage and without complaints. I formed Team Tim, ordered team T-shirts, and began leading the fundraising charge. We set a fundraising goal of $500, which we surpassed quickly and expect to more than double.
While we are disappointed we cannot gather with the larger PD community on Oct. 24 at Soldier Field, we are looking forward to participating in the virtual event. On event day, we will join a Facebook Live stream hosted by Patrick Fazio of NBC5 Chicago and featuring special guests.
Moving Day is a celebration of movement and, as such, during the virtual event instructors will lead exercises proven to help manage Parkinson's symptoms.
Despite the progression of Tim's symptoms, he remains positive. Even when tired and not feeling well, Tim can be relied on to help, to be present, to engage with those around him. He is a deeply loyal Chicago Cubs fan, an experimental cook who enjoys barbecuing, a caring father of three adult children, and a loving husband.
A combination of medication, physical therapy, plenty of rest, and exercise help Tim manage his YOPD symptoms.
In Illinois, 29,700 people are living with PD. It is through events such as Moving Day Chicago that we are reminded that we are not alone in this fight. Moving Day connects us to others in a similar situation and unites us all in our determination to find a cure.
We will be moving on Moving Day and well beyond in order to support the Parkinson's Foundation in their efforts to make life better for people with PD.
For more information about Parkinson's disease and Moving Day Chicago, visit MovingDayChicago.org.