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Holvino: Living With Parkinson's

My partner James was diagnosed with Parkinson’s on his sixtieth birthday. And because we knew so little about this disease, this felt like the end of the world for us.

Parkinson’s is a neurological condition that gets progressively worse. The nerve cells in the brain that produce dopamine die, causing movement, sleep, cognitive and other disorders. It typically shows up in your sixties in twice more men than women.

James’ was a classic case. In the two hundred years since Doctor Parkinson identified it as a medical condition, no cure has been found. Parkinson’s affects everyone differently, though James has many of the typical symptoms, including a tremor in his left hand, a shuffling walk, micro writing, and slow movements. On the other hand, his speech is understandable, his balance is good and his thinking is clear. We’ve learned to keep careful track of every symptom to discuss with the neurologist and address one at a time.

I’ve also learned that Parkinson’s is our condition, not just James’. Those who suffer from chronic life threatening diseases know that such a sickness impacts the whole family. It was important for us to accept responsibility for co-managing this disease. “James, did you take your meds?; time to go fast walking; you need to take a nap!” I remind him. But I need to do this in a way that doesn’t nag or challenge his autonomy.

Most importantly, we’ve learned that Parkinson’s is not the enemy; fear is. I often read in obituaries, “he fought a courageous battle with Parkinson’s.” But fighting is the wrong metaphor. Thanks to Tai Chi, we now regard Parkinson’s as an unexpected teacher. Rather than living in fear of the disease, we try to meet its energy. This openness helps us accept its limits and possibilities and see Parkinson’s as a worthy life companion, not an adversary.

James and I live relatively well, given his moderate condition. Fortunately, the disease has not progressed very quickly, but that, too, tends to be typical with Parkinson’s. This lends us a small window of opportunity to unite in support of the research and education needed to improve the lives of ten million people living with Parkinson’s world-wide.

Evangelina Holvino is a creative non-fiction writer and a free-lance consultant on issues of social differences and justice in non-profit organizations.
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