Dad Refuses To Pass Down Inheritance Of Illness

By Jesse Hardman

June 18, 2011

Listen to the Story

There are three black and white photographs of my dad that tell the story of the last few years. My brother, Andy, took them, and they are both beautiful and brutal.

The first one is of my dad on an August day in 2008. He’s standing in a lake in the Adirondack Mountains. Because of his tremors he’s down to 130 pounds from his normal weight of 170.

“He looks like he’s out of a concentration camp, he does,” my dad says about the person in the photo. “Nothing I ate, nothing I did, helped me put on weight, because it all went out through my tremors.”

He says it was the worst moment in his 15-year battle with Parkinson’s disease.

That photo helped push my father to do something he said he’d never do: have surgery to implant something called a deep brain stimulator, or DBS, a battery-powered medical device the size of a stopwatch. He made the decision after seeing how effective the DBS was in stopping tremors in some other Parkinson’s patients.

A Tremor-Free Existence

The second photo of my dad was taken at the hospital as he was being prepped for surgery. The nurses are trying to secure his head in a metal halo.

“My tremors were just active all over the place, and they couldn’t screw it in,” dad says. “And they finally, after four people holding me down, got it into my skull.”

The third photo was taken right after my dad got out of the hospital.

“Oh lord, now that one does upset me,” my mom says, covering her face at the site of his shaved head, complete with jagged scars where the deep brain stimulator was inserted.

“That’s the worst,” she says. “That’s really awful, oh gosh.”

But as bad as he looked, that photo is the beginning of what he calls his new life: a tremor-free existence where he can hold a fork, steady a book and walk straight.

The problem is, despite gaining 40 pounds back and looking human again, my dad still has Parkinson’s and it isn’t going anywhere.

More Than What You See

My most vivid recollection as a kid of going to church was hearing a booming voice fill the building. It was my dad’s voice. As an Episcopal priest, he commanded the room whether he was giving a sermon or singing a hymn.

Not any more. One of the ongoing issues my dad has is that his vocal chords aren’t engaging like they used to.

At church he gets by with a microphone; at home, you have to get right next to him to hear what he’s saying. It’s because his brain is no longer intuitively helping his body do its normal tasks. A lot of people see Parkinson’s — namely the tremors — so they think it’s physical, but it’s all in the brain.

A Roller Coaster Ride

To really get after Parkinson’s and not let it beat you, you need a team. My dad’s enlisted a crew of physical and psychotherapists, his surgeon, a Parkinson’s doctor, a regular doctor, a yoga teacher, a health food coop and even an artist.

Dr. Aviva Abosch implanted the DBS in my dad, and she’s stuck with him the last few years as he’s explored life after the surgery. She’s honest with him, blunt even.

“It’s not a beer commercial,” she says. “There’s no happy soundtrack after the surgery.”

The reality is the DBS may have stopped my dad’s tremors, but on the inside, it’s a real roller coaster ride, one that Abosch is all too familiar with.

“I can’t treat the sleep disturbance, I can’t treat the [gastro-intestinal] disturbances that can go along with Parkinson’s disease, I can’t treat the dementia, I can’t fix the depression, I can’t fix the compulsive behaviors,” she says.

So while my dad no longer shakes, he does still have night terrors so violent he knocks pictures off the bedroom wall, his memory is fading, and he’s struggled with some depression.

But he’s not taking these things sitting down.

Treatment And Genetics

Until my dad dies, he says, he wants to see how much he can learn. So far the jury is still out on Parkinson’s and genetics. He says he is worried I or one of my two brothers might get it.

A few months ago, dad’s brother died in Washington, D.C. He was planning to visit him for a weekend, and he died the day before my dad arrived. He had been sick for months, but the end was sudden. The biggest surprise came when my dad opened the Washington Post the next day.

“I didn’t learn till the obituary — that was the biggest surprise of all,” dad says. “I always thought it had to do with his stroke, but it wasn’t.”

His brother’s disease — multiple systems atrophy — may have some neurological similarities to Parkinson’s. It’s especially interesting when paired with the death a year earlier of a first cousin also from something Parkinson’s related. And another cousin, Joan, told my dad that she had supranuclear palsy. Some of her symptoms are eerily similar.

Tough Questions

In most ways Parkinson’s is just as hard on my mom, who acknowledges that her partnership with my dad is inherently imbalanced now. He needs her in a way that she does not need him.

“When you marry, it says, ‘For better or for worse, for richer or for poorer.’ This is the ‘for better or for worse’ part,” she says. “And when you do get married and you say those words, you don’t know what they mean. You don’t have a clue.”

So how is this all going to end? My mom has an image that comforts her. It’s that first photo, the one where my dad is standing in the water. He’s so raw and skinny and strangely calm.

“I’ve often thought that someday he’s just going to walk off into the mist, into the fog and it’ll be fine, because it’s sort of like he’s drawn to this mystical thing in himself, so it fits,” she says. “That picture is actually beautiful.”

Spending a week with my dad is exhausting. What’s become very clear to me is that he’s working twice as hard as everyone around him just to come across as somewhat normal. If people bring up Parkinson’s at all it’s to whisper, “Doesn’t Bob look good?” or “He’s doing so well.”

But those who know him best, my family, we worry about him. We notice the small differences — that he can’t keep his eyes open sometimes, that his face is often expressionless. We wonder how he’s really doing inside. And sometimes we are scared to ask him the really tough questions, the ones that keep us up at night.

As for me, dad, I’m tired of asking questions. I’m humbled you are investigating your disease in hopes of helping me, in case I get it. But even if I do, you’ve shown me the path for how to have a good life, regardless, through hard work, humility and humor. I am so very proud of you.

Jesse Hardman is a freelance reporter and international media trainer who lives in New York City.

Article taken from www.npr.org.

Comments are closed.