My Dad Looks Back on My Parkinson’s Diagnosis, Part 1

First in a two-part series.

With Father’s Day coming up this weekend, I decided to get my father’s thoughts on Parkinson’s disease. I would like to introduce my best friend, biggest cheerleader, and voice of reason: my dad, Craig Barbian. Technically retired and in his 60s, he works part time driving a shuttle for an assisted living facility in Wisconsin. My dad is the ultimate Wisconsin sports fan. He’s had Milwaukee Bucks season tickets for over 30 years, and has waited just as long to get Green Bay Packers season tickets.

Today, we reflect on when I was diagnosed at age 21.

SF: What were your thoughts when I started showing symptoms of Parkinson’s?

CB: Well, we never really knew anything specific. We just knew that something was “off.” The only thing that I can point back to is when you walked, you didn’t swing your arms — you put your hands on your thighs and would sort of shuffle along. Then you started to drag your feet and we knew something was wrong.

We met with a neurologist who said it could be Parkinson’s, but he was moving across the country in a few weeks. What was your gut reaction?

My first thought was, “Here was a doctor that we seemed to like. He gives us this horrible news, then tells us that he was moving in the next week or two?” But he referred us to [another neurologist] at Rush University Medical Center in Chicago who was very straightforward and compassionate about the diagnosis.

Did you find it easier to tell me the diagnosis yourself? Or would you have preferred that someone else told me, such as the neurologist?

From an emotional standpoint, I think it’s always easier to have a professional deliver news like that because they have done it numerous times. And hopefully, hopefully, they do it in a calm, caring manner. From a parental standpoint, you would rather have your child hear any bad news from you because you will naturally try to cushion the blow.

Describe your thoughts and feelings while you were sitting in the waiting room at Rush Medical Center and I was first meeting with the nurse.

My thoughts really started when we checked in. The room was full of older Parkinson’s patients in various stages of the disease, some in wheelchairs with this lonely look on their faces. I saw the look on your face that seemed to say, “What the hell am I doing here?”

You looked like you had this terrifying glimpse into your future and were struggling to fathom what was going on. That look certainly made sense because it was exactly how I felt and it was unbelievably difficult to try to maintain an air of confidence that everything was going to be all right.

What was the hardest part about my diagnosis?

Probably the sense of helplessness. As a parent and, I think, as a dad especially, your role is to be the protector of your family. Your self-image is that you can make everything all right no matter the situation or circumstances. When your child receives a diagnosis like this, you realize that you have control over nothing.

You may think that you are in charge, but you’re not. It’s not an ego thing, it’s not that you’re not as powerful as you think. It’s more an understanding that things are in somebody else’s hands, whether it’s your God, your doctor, or somebody else.

You think of the many times that you saw a parent with a special needs child and said to yourself, “There but for the grace of God go I.” Well, guess what? Now you’re that parent.

What advice would you give to new caregivers or care partners?

First, educate yourself. Do your research, find out all you can about the enemy that your loved one is fighting. There are numerous treatments and everyone’s situation is different.

Ask questions. Go to doctors’ appointments, be involved in monitoring symptoms. The person with PD often isn’t even aware of things that they are doing. You may need to be the eyes and ears of their doctors.

Get involved with an organization with your best interests in mind. [Samantha] found the Wisconsin Parkinson’s Association early on. We have been doing fundraisers for the WPA for about eight years, and the feeling of inclusion and purpose that you derive from helping others in the same boat is invaluable.

Take care of yourself. Older caregivers in particular need to keep themselves available to their loved ones, and it’s easy to get so wrapped up in being a caregiver that you get run down and then are of no use to your loved one.

Live your best life. Parkinson’s really sucks for all involved. There will be good days and other days that will test your patience, your emotions, and your mental well-being. But when you need to cry, cry. But I prefer a good laugh in dealing with a situation that makes absolutely no sense.

Join me next week as I continue my conversation with my dad on our journey to “Embrace the Shake.”

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