Fighting Parkinson's with faith and bocce ball - Los Angeles Times
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Fighting Parkinson’s with faith and bocce ball

Robin Williams performs at the Universal Amphitheater on July 1, 1979. Photo: Tony Barnard / Los Angeles Times Scanned for obit 8/11/14.
(Tony Barnard / Los Angeles Times)
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I hate to see things end like this.

Robin Williams’ widow recently told the Associated Press that she didn’t blame her husband for taking his life in August 2014. The brilliant actor/comedian had been diagnosed with Parkinson’s disease several months earlier.

Susan Williams said her husband was treated for anxiety and depression during his final months.

The coroner’s report referenced signs of Lewy body dementia, a dreadful condition that can lead to a rapid deterioration of one’s thinking and reasoning abilities. Williams’ mental state was in steep decline.

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“I think he was just saying, ‘No,’ ” Susan said of her husband’s suicide, meaning that he didn’t want to struggle with unremitting degeneration.

I don’t judge him. He was thrust into a grave situation.

I was diagnosed with Parkinson’s almost 10 years ago. I’ve found it easy to get caught up in negative thinking. I’ve discovered that it’s easier to stay at home and avoid awkward social contacts than it is to go out and take on the world.

But take on the world we must. It’s our only option.

Parkinson’s patients must learn to be proactive or run the risk of diffidently stumbling into a future over which they have scant control.

Parkinson’s is a progressive neurological disorder with no known cure. It causes nerve cells to die or become impaired, and patients exhibit such symptoms as tremors or shaking, slowness of movement, rigidity or stiffness, loss of facial mobility, and balance difficulties. Other signs include a shuffling gait, cognitive problems and muffled speech.

The Parkinson’s support group to which I belong has been a lifeline for me for nine years. I don’t know if Williams attended a group or not.

Members of my group have recently endured a spate of bad reports. One took a nasty fall and broke his hip; a second had a stroke; and a third was hospitalized with neurological issues. Just weeks ago, my best friend since the ninth grade died of Parkinson’s complications.

But we press on.

Medications can bring about complicating issues as well. Because our symptoms advance, dosages are often in a state of flux.

This whole Parkinson’s “package” can be bewildering.

There are at least 80 symptomatic markers of the disease. I evidence close to a dozen.

No one person has all makers but it takes only a few to do a royal number on your constitution. Your symptoms negatively impact your physical body and psyche.

I have a friend, John, who’s had Parkinson’s for a decade. He’s discovered a way — unique to him — to quiet, for a moment, the infernal thrumming of this disease. It’s called bocce ball, and it’s changed him.

Bocce ball is similar to lawn bowling. It’s played with wooden balls on a long, narrow court. The only time John’s severe hand tremor abates is when he picks up a bocce ball. Then, for a few seconds, he’s steady as a rock and in control! Little victories can make a huge difference.

I, too, have ways of combating this vexatious disease. Faith, family, friends. I learn most from those who fight the same fight that I’m fighting.

I have a friend who’s in the advanced stages of the illness. He and his wife recently returned from a thousand-mile auto trip.

“Friends and family tried to discourage us from going,” his wife told me, “but we decided if we were ever to go, it had to be now. We had a wonderful trip — just the two of us. Many times along the way strangers came forward to assist us.”

She was floored by the generosity of strangers.

I have four Parkinson’s heroes in my life: my dad and three others. Their last years were crowned by dementia and a total annihilation of verbal dexterity. No one faces such a future with equanimity.

Robin Williams didn’t. I don’t.

Had we known, many of us in the Parkinson’s community would have reached out to Williams. We’d have shared with him our best advice.

As one of my Parkinson’s buddies says: “We’re better together.”

JIM CARNETT, who lives in Costa Mesa, worked for Orange Coast College for 37 years.

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