My Dad Shares His Perspective on My Parkinson’s Journey, Part 2

Last in a series. Read part one.

I am so honored to have my dad, Craig Barbian, join me again today to continue our discussion from last week about my journey with Parkinson’s disease (PD). Excerpts follow.

SF: What is the biggest challenge of having a child with a chronic illness?

CB: It might be knowing when to offer assistance with a task, because as a parent your instinct is to train them to do things for themselves so they are self-sufficient.

But when your child, even though they are an adult, struggles with fine motor tasks like tying their shoes or cutting their food, it tears you up. But you need to remember to ask if they need help before just jumping in.

What aspect of life with Parkinson’s do you wish more people knew about?

I think the fact that some people feel like people with Parkinson’s are invalids, that they are incapable of doing things for themselves. Most people with PD that I know will do whatever they can to hang on to their independence as long as they can and can be very resourceful in doing so.

What is your biggest fear in terms of this disease?

I don’t know if it’s a fear as much as apprehension about the future, the not knowing what the coming years will bring. If I didn’t believe with every fiber of my being that a cure, or at least a better course of treatment, will be found, I couldn’t keep doing what we do to work on behalf of various Parkinson’s organizations.

I take some comfort that there are really committed people working not only on the medical front looking for cures, but people like Michael J. Fox raising the funds to support research.

But there are also thousands of people like us whose family and friends help support our efforts to raise awareness and funds.

You wrote a song for me about having Parkinson’s. Describe your feelings when you heard the song at my wedding.

I think this story needs some context. I have a friend who is a singer and songwriter. I wrote some lyrics a couple of years ago for a song called “Why Not Me,” about my daughter getting Parkinson’s and not me. He put it to music and played it for me on my birthday when we saw him doing a gig.

Fast-forward to your wedding. Time for the father-daughter dance. My friend’s band was playing the wedding and our friend started playing a song he had written for his daughter called “Easy Child.” The song then became a mashup with my song, and that was it for me. I had no clue that was coming and I cried through the rest of the dance. That’s still the most emotional moment of the day for me.

What is your biggest hope for me for the future?

I want you to be happy, whatever and wherever that may take you. I want you to have some semblance of normalcy in your life, to be able to do all those things you want. I don’t expect a miracle cure in my lifetime, but I’m really optimistic about a breakthrough in yours.

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Thank you, Dad, for sharing your point of view on watching your oldest child live with PD.

Together, you and I will one day “Embrace the Shake.”

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