A Parkinson’s Diagnosis From My Dad’s Perspective

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by Samantha Felder |

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I would like to welcome back my dad, Craig Barbian. Since our discussion in a two-part series last June was so well received, I thought it would be a neat follow-up to have him share more of his perspective by writing today’s column.

Take it away, Dad!

***

The doctor said it was “Parkinsonian symptoms.”

“As in Parkinson’s?” I asked. I’ll never forget his direct reply.

“I’m afraid so.”

My mind began to spin a little as I tried to figure out what to ask next. I certainly wasn’t prepared for this. It was hard to concentrate when you’re suddenly told that a life-changing disease has shown up on your doorstep.

I’ve had migraines since I was a teenager, and I’d seen several neurologists over the years, but this was totally unexpected — especially since the patient wasn’t me, but rather my 20-year-old daughter, Samantha.

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Until that point, I had only a passing acquaintance with Parkinson’s. Although I knew the actor Michael J. Fox was diagnosed with it in his late 20s, my picture of Parkinson’s sufferers was of older people, particularly men, who had lived most of their lives before being afflicted.

But this was my baby girl, still in college, still trying to find her place in the world. This can’t be happening, I thought. If anything, it should be me getting this diagnosis.

Multiple tests ensued, all of which confirmed the diagnosis. Samantha persevered, finishing her college education under a cloud of uncertainty. But for my wife and me, the diagnosis put us in the category of those parents we had often seen caring for a special needs child. We wondered how they felt, how they coped, how they moved forward like “normal” people.

We wondered if we had missed the signs earlier on, if perhaps we had taken her to a doctor sooner things might be different, or if our genetic makeup that we had passed on was responsible. Privately, I berated God for doing this. I made numerous Faustian deals with the devil to give me PD and spare my daughter.

You feel utterly helpless. You feel that somehow you failed your child by not keeping her safe. You feel like you shirked your parental responsibilities.

You find doctors, you travel to find the best treatment (including three trips to the Mayo Clinic), you look for accommodations to help in whatever way you can. But eventually, reality kicks in and you move forward. You look at the best way to attack this unwelcome intrusion into your life.

Our family has adopted the philosophy that you can cry or you can laugh at your situation. We try to do more of the latter. That’s not to say that there aren’t still tears shed or the occasional epithet uttered about this cruel disease. But we try not to dwell on the negative and look at the positive side of life.

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Positives? What positives can there be to having PD? Well, I shamelessly play the Parkinson’s card on my daughter’s behalf. Looking for a donation for our Parkinson’s fundraiser? I make sure they know why my daughter started it. Looking for meet-and-greet tickets for one of her favorite musical artists? I let them know that meeting them would (hopefully) put a smile on her face.

Parkinson’s has taken me to the halls of Congress to lobby for more funding for all neurological diseases. I have met a number of incredibly caring people who will do whatever they can to help fight this disease.

But when all is said and done, having a daughter with Parkinson’s sucks. I would like to think it has made me a little more compassionate, a little more reluctant to be judgmental of others, and that it has increased my humanity and made me see the bigger picture of life.

Over the last decade, Samantha has finished college with a teaching degree. She got a job teaching first-graders for about a year until her disease forced her to quit teaching. She got married in 2018 and recently moved to Florida, because Wisconsin winters make her stiffness that much worse.

She’s the same Samantha she was before Parkinson’s: a little goofy, a little forgetful sometimes, if what she was supposed to remember isn’t of great importance to her. Parkinson’s may take little pieces of you physically, but it can’t take your soul.

I am optimistic, but also realistic in dealing with Sam’s condition. It’s not going to get better tomorrow, or next week, or next month. But I know that it’s going to get better. I’m extremely optimistic that better days are on the horizon. In the meantime, I find some comfort in the following words from Michael J. Fox: “When life takes away, something of greater value is always given in return.”

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Joy avatar

Joy

Thankful for a father's honesty & the quotation from Michael J. Fox. These were words of encouragement for myself & for my husband who has Parkinson's.

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Valerie Alder avatar

Valerie Alder

My husband has early stages of Parkinsons

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Rob Warner avatar

Rob Warner

Thanks for the awesome story! I have early onset at 33. I know my mom worries that she didn't do enough as well. I will definitely share this with her!

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