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Dad Refuses To Pass Down Inheritance Of Illness
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Dad Refuses To Pass Down Inheritance Of Illness

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Dad Refuses To Pass Down Inheritance Of Illness
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SCOTT SIMON, host:

Producer Jesse Hardman first told us about his father's struggle with Parkinson's disease back in September of 2006. Jesse's father, Bob Hardman, is an Episcopal priest in St. Paul, Minnesota. Now Jesse Hardman tells us that in the four years since we first aired his story, the Reverend Hardman fought physical symptoms that had started to overwhelm him and there have been a series of trials since then.

JESSE HARDMAN (Freelance reporter): 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 theyre both beautiful and brutal. The first one is of my dad on an August day in 2008. Hes standing in a lake in the Adirondack Mountains. Because of his tremors, hes down to 130 pounds, from his normal weight of 170.

Reverend BOB HARDMAN (Episcopal priest): He looks out of a concentration camp, he does. Nothing I ate, nothing I did helped me put on weight because it all went out through my tremors.

HARDMAN: That photo helped push my father to do something he said hed never do, have surgery to implant something the Deep Brain Stimulator, or DBS, a battery powered medical device the size of a stop watch. He changed his mind after seeing how effective the DBS was in stopping tremors in some other Parkinsons patients which leads me to the second photo of my dad - a shot at the hospital where he is prepping for his surgery. The nurses are trying to secure his head in a metal halo.

Rev. HARDMAN: And my tremors were just active all over the place, and they couldnt screw it in. And they finally, after four people holding me down, got it into my skull.

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

Ms. HARDMAN: Oh lord, now that one does upset me.

HARDMAN: My mom covers her face at the site of his shaved head, complete with jagged scars where the Deep Brain Stimulator was inserted.

MS. HARDMAN: Thats the worst. Thats really awful, oh gosh.

HARDMAN: 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 Parkinsons and it isnt going anywhere.

(Soundbite of music)

HARDMAN: My most vivid recollection as a kid of going to church was hearing a booming voice fill the building. It was my dads voice. As an Episcopal priest he commanded the room whether he was giving a sermon, or singing a hymn. Not any more.

(Soundbite of music)

Rev. HARDMAN: (Singing) Mimimimimimi. Mimimimimimi.

HARDMAN: One of the ongoing issues my dad has is that his vocal chords arent engaging like they used to. Its because his brain is no longer intuitively helping his body do its normal tasks. A lot of people see Parkinsons, namely the tremors, so they think it's physical. But its all in the brain.

Unidentified Woman (Voice coach): Take a good breath of air and say ah for as long as you comfortably can.

HARDMAN: In order to get his voice back my dad now goes to a voice coach, who tells him to be big and loud.

Voice Coach: You can start any time.

Rev. HARDMAN: Ahhhh.

HARDMAN: To really get after Parkinsons, and not let it beat you, you need a team. My dads enlisted a crew of physical and psychotherapists, his surgeon, a Parkinsons doctor, a regular doctor, a yoga teacher, a health food co-op and even an artist.

Dr. Aviva Abosch implanted the DBS in my dad, and shes stuck with him the last few years as hes explored life after the surgery. Shes honest with him, blunt even.

Dr. AVIVA ABOSCH (Neurological Surgeon, Minneapolis): You know, its not a beer commercial. You know, theres no happy soundtrack after the surgery.

HARDMAN: The reality is the DBS may have stopped my dads tremors, but on the inside, its a real rollercoaster ride, one that Dr. Abosch is all too familiar with.

Dr. ABOSCH: I cant treat the sleep disturbance, I cant treat the GI disturbances that can go along with Parkinsons disease. I cant treat the dementia in those patients who develop the dementia. I cant fix the compulsive behaviors.

HARDMAN: 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 hes struggled with some depression. But hes not taking these things sitting down. Hes got a smile on his face presently, looking quite good with his APDA Parkinson hat on day.

Dr. Paul Tuite has been with my dad for 15 years. He first diagnosed my dad with Parkinsons, and my dad still looks to him for guidance.

Rev. HARDMAN: I mentioned to you last we met of three of relatives who have varying degrees of Parkinsonism and wondered about whether there was any genetic connection.

HARDMAN: Until my dad dies, he says, he wants to see how much he can learn. So far the jury is still out on Parkinsons and genetics. Hes worried me, or one of my two brothers might get it. A few months ago his 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.

Rev. HARDMAN: ...I always thought it had to do with his stroke. But it wasn't.

Mr. HARDMAN: 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. There's another cousin, Joan, who told my dad that she had supranuclear palsy. Some of her symptoms are eerily similar.

Rev. HARDMAN: What's kept you going, Joan.

JOAN: Maybe (unintelligible) sense of humor.

Rev. HARDMAN: Yeah.

JOAN: What's kept me going? Well, I'm too young to die.

Rev. HARDMAN: Yeah, right.

Mr. HARDMAN: What's amazing about this phone call is my dad's voice and facial expressions. He's loud, and he's animated, two things he rarely exhibits now.

Rev. HARDMAN: It's different when you're talking to somebody with Parkinson's as opposed to somebody who doesn't have it.

Mr. HARDMAN: This comment annoys my mom.

Mrs. HARDMAN: I don't think I'm in the club. Nope. That's a funny feeling. It feels like I've been hired as the assistant. Um-huh. I get the small voice and the small portion.

Mr. HARDMAN: 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.

Mrs. HARDMAN: When you marry, in the marriage ceremony it says, for better or for worse, for richer or for poorer. This is the better or for worse part. And when you do get married, and you say those words, you don't know what they mean. You don't have a clue.

Mr. J. HARDMAN: So how's 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.

Mrs. HARDMAN: You know, 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 and it fits. So that picture is actually beautiful.

Mr. HARDMAN: 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're scared to ask him the really tough questions, the ones that keep us up at night.

Mrs. HARDMAN: My question is, as your wife, what do you need from me?

Mr. HARDMAN: Hey dad, I'm wondering what's the best thing about having Parkinson's disease?

Unidentified Man: The question for my Grandpa Bob, Are you afraid, that something's going to happen, that you're going to get sicker and things are going to get worse for you?

Mr. HARDMAN: As for me, dad, I'm tired of asking you questions. I'm humbled you're 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.

(Soundbite of music)

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

(Soundbite of music)

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