Loving the Man – Not Loving Parkinson’s

The way that my husband Karl and I met was unconventional. It was 1995 and the Internet was just starting to make strides into people’s homes. We met on a Saturday night – in a chatroom! It was a unique start for a unique union.

Karl and I spent the first few nights getting to know each other by playing Twenty Questions via instant message. Asking all types of questions about life, living, likes and dislikes, I remember trying to be creative and funny while making sure I spelled rapid replies, correctly. Karl made me laugh through his responses.

I could tell he was smart, funny, inquisitive, and overall a happy person. All these qualities made me want to know more about him and meet him. Our online conversation progressed to the phone – a dated hardline phone. When I wasn’t working, we would spend what seemed to be hours talking to each other. One Sunday evening, maybe a week or so into our friendship, he revealed to me that he had Parkinson’s disease.

How Parkinson's entered my life

In a flash, my mind flew back to a memory of sitting in anatomy class, my senior year of high school, learning about the nervous system. My teacher spoke briefly about Parkinson’s disease, detailing that it mostly affected older people and mentioning something about a tremor being the most notable symptom.

I asked Karl how could it be that someone so young (at the time, Karl was 28) could have Parkinson’s? He began to relay to me his personal story of struggle in living with undiagnosed symptoms of young-onset Parkinson's, visiting over 9 doctors to find out what was wrong, and how he had self-misdiagnosed himself with a brain tumor!

Fast forward to today, 22 years later. When I introduce myself at Parkinson’s events or support groups, I make sure to say that I met Karl after his diagnosis. I feel it is important for fellow care partners to know that my introduction to Parkinson’s may be unlike theirs.

Parkinson’s did not enter my life via a shocking diagnosis in a doctor’s office. Parkinson’s entered my life because I love a wonderful human being who just happens to be living with this disease.

Adapting to life with Parkinson's

I wasn’t about to give up a life with Karl because of Parkinson’s. Does it make life difficult sometimes? Absolutely! Parkinson’s can be a total disrupter – wrecking plans to take a walk or a hike, enjoying a meal with friends, or changing plans for a vacation. But, here’s where adaptation comes in and turns Parkinson’s into a teacher.

Instead of taking a walk or a hike, we might drive around taking pictures at overlooks until the medication kicks in. We found that the friends who couldn’t cope with the dyskinesias at dinner lead us to new friends who didn’t mind and encouraged us to go out more.

We modified our vacation plans to include off-times, and we found ways to make accessing vacation sights easier, such as taking cruises. Do I have uncertainty about the future? Yes! But it’s not primarily the Parkinson’s that causes this uncertainty. Doesn’t everybody have a sinking feeling sometimes when they think about the end of their life or their loved one’s life? I do.

What do I do about that feeling? I don't let the uncertainty rob me of this moment. I do all I can to make the most of this moment and realize that I love my life, I love my husband, and I’ll do whatever it takes to make the most out of today – whatever it brings!