Title: Scenes from a Struggle with Parkinson's Disease
Authors: LINDA WERTHEIMER
Source: Weekend Edition Saturday (NPR); 09/09/2006
Available: http://search.ebscohost.com/login.aspx?direct=true&db=nfh&AN=6XN200609091209&site=ehost-live
Scenes from a Struggle with Parkinson's Disease
12:00-13:00 PM , Bob Hardman's disease first began to manifest itself on his hands. His pinky would shake as he laid his hands of the heads of his parishioners in prayer. Mr. Hardman is an Episcopal priest. He lives in St. Paul, Minnesota. He has Parkinson's disease. This is Bob Hardman's story as told by his son Jesse Hardman.
(Soundbite of microphone shaking)
JESSE HARDMAN: The sound you're hearing right now is my dad, Bob, holding my microphone. He can't keep it steady because he has Parkinson's, a brain disease that affects people's motor skills and muscle movement, sometimes leaving them with massive tremors, like these.
(Soundbite of microphone shaking)
HARDMAN: At the age of 67, simple things like eating, walking and driving have become real challenges. During a recent visit home I decided to finally ask what it's like to be inside his body.
How often do you drive now?
Reverend BOB HARDMAN (Parkinson's Victim): About once a day for about two miles, because my arms get rigid and my feet start shaking and the acceleration of the car goes da-da da-da da-da da-da.
HARDMAN: On a Saturday morning my dad and I are on our way to an annual Parkinson's walk. My dad has become very involved in the social and political side of the disease. He likes to wear a t-shirt out in public that says Parkinson's Sucks.
(Soundbite of music)
HARDMAN: We arrive at the event in Minneapolis where a couple of hundred of people are walking around a park. Booths are set up hawking everything from t-shirts to backscratchers, an inside joke to lighten the mood. We run into a friend of my dad's who recently elected to have surgery implanting a deep brain stimulant.
Unidentified Man: It's definitely helped a lot.
HARDMAN: It's a device that helps calm tremors in some patients.
Unidentified Man: But it's not for everybody. Nope.
HARDMAN: The deep brain stimulator is a sensitive subject for my dad. He belongs to a Parkinson's support group and says an increasing number of members are opting for this surgery, a decision my father and a few others in the group are wary of.
Rev. HARDMAN: We're holding out to other means rather than having surgery. When everybody's doing it, you think, what's wrong with you? Why aren't you doing it?
HARDMAN: In the 10 years since Parkinson's hit, my dad has employed homeopathic remedies, a motorcycle helmet lined with magnets, increased exercise, a complete diet overhaul, some mainstream drugs, and even visits to doctors outside the country who are trying methods not sanctioned in the U.S.
Rev. HARDMAN: I remember with the electromagnetic therapy I was getting in Greece, there was one day where I was reading the newspaper, and usually the newspaper rattles when I'm reading it. But all of the sudden it stopped and I was totally calm for a half an hour. And it was almost like I didn't want to say anything, I didn't want to move.
HARDMAN: What my dad is really hoping for is a breakthrough politically and scientifically with embryonic stem cells. He even goes to D.C. once a year to lobby in favor of the controversial research.
Rev. HARDMAN: You know, you'll implant embryonic stem cells in women who want to become pregnant and give new life to them, but you won't give life to the other end of the spectrum. You won't give life to people with diabetes, with people with MS, with people with Parkinson's, and people with Alzheimer's. Why is there this separation? Why is there this discrimination?
HARDMAN: My dad writes a lot of letters to Congress and has even confronted a senator or two, but this hasn't amounted to much. He's beginning to lose hope in his wait for a cure.
(Soundbite of newspaper rattling)
HARDMAN: That's my dad trying to read the newspaper. In the beginning I'd get embarrassed about my dad's condition. I was self-conscious about things like how skinny he was because of his tremors. His clothes literally hung off his bony frame. Now I'm defensive. I hate it when we're in public and people stare. I recently overheard a couple on a beach debating what condition my dad had. I wanted to tell them off. One of them approached my dad. It turns out his father-in-law had Parkinson's too and refused to leave the house out of embarrassment. He wanted to tell my dad he was proud of him.
Taking out my microphone has done two things. It's allowed me to ask the questions I always wanted to ask, and it's given my dad and my mom license to really let it out.
Ms. SUSAN HARDMAN (Wife of Parkinson's Victim): Parkinson's is (bleep). And I'm sorry that I said that.
HARDMAN: That's my mom Susan, who's been on her own rollercoaster ride since my dad started shaking. We go for a drive so she can get out of the house.
Ms. HARDMAN: It's like a little club, and all the people in it are working so hard not to be in the club anymore.
HARDMAN: My mom goes to Parkinson's support meetings with my dad when she feels up to it, which is less and less. She says she struggles with the balance between caring about my dad and feeling exhausted by the disease.
Ms. HARDMAN: So you have to give yourself permission some days to feel like, yeah, this is hard and I hate it and it's crummy and I wouldn't wish it on a dog.
HARDMAN: My mom says the biggest toll on her has come at night, when my dad has his intense nightmares, a neurological symptom that's common in Parkinson's sufferers. She's a light sleeper, so she can't get away from the very vocal dreams.
Ms. HARDMAN: Well, I have a dream that comes up a lot - he does - which is being chased by bad men and him trying to, you know, scare off these very scary bad people who are coming after him.
HARDMAN: Sometimes my dad's dreams make him physical and he hits my mom or worse.
I've heard you bit her.
Rev. HARDMAN: Oh yes. One time I bit her. I forget what I was biting in the dream, but her arm appeared.
HARDMAN: Can you laugh at that or are you more sensitive about that?
Rev. HARDMAN: I can laugh about it now, but I was very sensitive about it when it happened, because it hurt and it scared your mother.
HARDMAN: My parents have separate beds now and sometimes when my dad is really loud my mom moves to a different room. She says it makes her sad but she accepts that she can't control the problem. She says she worries about things getting worse in the next ten years.
(Soundbite of clanking)
HARDMAN: This is what it sounds like when my dad tries to eat.
(Soundbite of clanking)
HARDMAN: Parkinson's is a unique disease because people can have it for a very long time. My dad could conceivably live with Parkinson's into his 80s or 90s, but if symptoms persist and worsen, would he want to?
(Soundbite of clanking)
Rev. HARDMAN: This is no fun. This is not a disease for sissies.
HARDMAN: For the last ten years, my dad has fought a daily battle to feel normal for just a moment every day. He's learned to bring a straw everywhere he goes in case he wants to drink something. He's learned to make jokes about his tremors so people aren't scared of him. He's learned to sit on his hands so people won't stare at him so much. He's learned to be himself in spite of his body.
Rev. HARDMAN: And I've met Parkinson's people who would say that they've learned some things by having Parkinson's about themselves and about life. And I have too, very deep things. But still, I don't identify with the disease. I refuse to say I am - my name is Bob Hardman, I have Parkinson's.
HARDMAN: After all the questions, my dad is pretty tired.
Rev. HARDMAN: It's enough. Turn it off.
HARDMAN: Talking about his condition is both a relief and a burden. But there's one last question staring back at me from my list.
Have you ever had a dream of you not having it?
Rev. HARDMAN: No, I haven't had that dream yet. No. No.
(Soundbite of music)
WERTHEIMER: Reporter Jesse Hardman produced his father's story with help from Jay Allison and the public radio Web site Transom.org. You'll find additional commentary from Jesse and his parents at our Web site npr.org.
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