How We Disclosed a Parkinson’s Diagnosis to Friends and Family

How and when to tell others about a Parkinson's diagnosis are personal decisions

Jamie Askari avatar

by Jamie Askari |

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What is the best way to let your family, friends, and colleagues know that you have been diagnosed with Parkinson’s disease (PD)? Or any disease for that matter? When is the appropriate time? Should you wait until they start worrying about the changes they see and assume the worst? Or should you tell them immediately after your diagnosis?

Every situation is unique, and disclosing a disease diagnosis is a personal decision. Choosing how to communicate your diagnosis is also challenging.

When my husband, Arman, was diagnosed with early-onset Parkinson’s disease in 2009 at age 38, we gradually told friends and family in our close-knit circle. We both agreed that the simplest way to explain it to the masses would be for Arman to write a letter about his diagnosis.

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The letter explained the basics of Parkinson’s disease and what he’d been experiencing in terms of early symptoms, medications, and doctors. He talked about what we can expect from PD, although we all know how unpredictable it can be.

He emphasized that people should not treat him differently because of his diagnosis. He was still the same person; the diagnosis didn’t change that. Arman didn’t want to be defined by PD and hoped he’d be treated as such.

Telling our children, however, was not an easy conversation. We sought out experienced therapists to assist with this, as we had only one shot at getting it right.

Our oldest daughter, Lexy, was 13 at the time; our second daughter, Mandy,  was 9; and our youngest, Jake, was 6. Lexy had started noticing signs that her dad wasn’t himself lately, and she approached me about what she saw. We confided in her about Arman’s diagnosis before telling the two younger kids. I didn’t like the idea of our daughter holding a secret from her siblings, but I also didn’t want to lie to her about her concerns, as they were valid.

Intentional family time

At that time, Lexy and Mandy became involved in musical theater, and Jake started playing travel baseball. Although the kids were busy, we always prioritized having several home-cooked family dinners each week with just the five of us. Family mealtime was a precious gift that I highly recommend to young families.

When we told the other two children, it was a beautiful night in Cleveland, the weather was warm, and the kids were happy. They were running around outside and playing in the backyard while we grilled a delicious steak dinner. As we always do, we approached the conversation with a positive spin.

We explained the basics of early-onset Parkinson’s disease and how it would affect their dad. We avoided getting into too much detail so as not to overwhelm the kids. We would accept this diagnosis with grace, dignity, and strength as a family. Life with Parkinson’s would be our new normal, and we would take it on like the warriors we are.

For our family, the acceptance of PD in our lives is still evolving, even after the past 13 years. Some days are better than others. Some days with PD can be like a walk in the park, while others can be like walking through a minefield. But we all continue to see this experience as a positive for our family.

We are all close and have unique bonds that have formed due to our little family war with PD. But in the war of PD vs. the Askari family, we’re winning every battle with smiles on our faces.


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

Mike avatar

Mike

Jamie,
For us there really was not much of a choice…attack or let the condition consume our lives. We choose to attack. Our house has been modified for safety. Both my wife and I exercise daily. Sharing thoughts in these columns has really given me hope. I take my medication and we try and eat correctly (sort of). My hope for you and your family is that you folks will endure the change and even grow from it. Blessings, Mike

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