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By Ron Grunhut

Ron Grunhut storyThis story was originally constructed as a photo essay. Visitors are encouraged to view the original essay by clicking here or on the cover image at right.

I returned to work as soon as they announced it was safe, but the dust lingered for weeks. You could taste it… even inside my office building located a block from ground zero. The 9/11/2001 terrorist attacks had taken place just outside my window, so when my left hand began to tremble for no apparent reason, I suspected the cause was anxiety, or stress, or perhaps just too much coffee.

Then one day while walking to work, I felt an awkward imbalance, as if I were compensating for a weakness on one side of my body. “Are you drunk this early in the morning?” the person behind me asked. “You’re all over the sidewalk!”

When painful spasms in my foot repeatedly prevented me from walking, I realized it was time to see a doctor. The foot would ball-up like a fist, causing me to stop until the muscle released and the pain subsided.

After a long search, I found a neurologist specializing in movement disorders. The doctor immediately recognized my symptoms were part of something larger. The shaking, slowness of movement, and muscular rigidity were all hallmark symptoms of Parkinson’s disease (PD).

The doctor explained that PD is the second most common neurodegenerative disease, after Alzheimer’s, that it is progressive, and that there is no cure. In PD, the brain’s ability to produce a chemical called dopamine is irregular or inadequate and that in turn prevents nerve cells in that part of the brain from properly sending instructions to the muscles that control movement.

Both genetic and environmental factors are thought to have a role in causing PD.My father and grandmother were diagnosed with the condition when in their 60s. I suppose that my exposure to the toxic dust at ground zero may have had something to do with triggering my symptoms at a younger age (48). It’s hard to know, since PD manifests itself differently in each person.

The adverse effects and diminishing effectiveness of PD medications make the condition difficult to control. When my five times a day drug cocktail works effectively—my symptoms become less noticeable, but when it doesn’t— my legs or hands may shake uncontrollably and rigidity in my muscles can cause my body to twist into odd postures.

It has become a challenge to do many of the things I used to take for granted. My energy dissipates quickly and it requires intense conscious effort to turn over in bed, stand up from a chair, or put on a shirt. I have difficulty picking up my feet when I walk and often stumble. My sense of smell is mostly gone; I slur my speech, and often have blurred or double vision. I have difficulty standing up straight, going to sleep and staying asleep. My ability to socialize, multi-task, and meet the demands of a full-time job have all been impacted. Additionally, my facial muscles become frozen in an expressionless “mask” causing people to wrongly conclude that I am angry, unhappy, disinterested or bored when I'm none of these.

The effects of PD have transformed every aspect of my life. At first I was overwhelmed… both aware and fearful of the Participating in Parkinson's disease research challenges ahead. It would take time to fully grasp and then learn to cope with whatever PD had in store for me. My new reality needed a new me, and I needed to remake myself to fit in.

I made the conscious decision to remain functional by increasing my level of physical activity and awareness of my diet. I would keep a positive attitude, let go of the past, and adapt to my condition mentally and physically whenever possible.

I don’t claim to have medical expertise, but I have learned that the way I think about obstacles, to a large extent, governs my ability to deal with them. While I can’t overcome every symptom, I can make changes that improve my outlook. It’s surprising how just remaining active and pursuing what you’re passionate about can help. Now I have less stress in my life, exercise regularly, make time to have fun, and participate in Parkinson’s research studies to help find a cure.

Ron Grunhut is a NY-based photographer and documentary filmmaker.

Posted by PDF Admin on August 01, 2013

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