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An Interview with Roy Nierenberg: Part 2 of 3

An Interview with Roy Nierenberg

Part 2 of 3: Relationships and New Endeavors

By Linda Shin

(Click here for Part 1: Living with Huntington’s Disease)

“HOPES: An Interview with Roy Nierenberg” continued…

Relationship with family:

“I’ve got my wife, Mimi, a daughter who is 30 years old and a son who is 26 years old. And they’re all really supportive and wonderful. Mimi is my main caregiver and it’s been hard for her. And, we’ve adjusted in a bunch of ways. One way is we’ve recently just bought new beds. We bought like two separate beds—two twin beds. Because what I was doing is like having some form of chorea, is pulling blankets off or kicking her or when I turned around in my bed, she felt it was like an earthquake. So she wasn’t sleeping and she’s doing lots and lots of stuff. So at my last neurologist appointment, he suggested, ‘Why don’t you try a different type of bed structure?’ And we’ve found it’s better, she’s sleeping better, so it’s great.

I don’t think I’d be doing so well if it wasn’t for her. She is there for me, but I can’t wear her out. And there’s so many things that she has to do, and part of it is kind of working through my business, and she’s been selling it, or closing it, I’m not sure, but I have to give her full rein to do that, and know that it’s in my best interest to do that. And we think the best thing we did is to have kids, and they’re fantastic. And I mean, Huntington’s is a scary disease and we have to make room for it in the family, but you know, we are doing it.” 

Impact of HD on a changing lifestyle:

“My neurologist said, ‘Hey Roy, I don’t want you driving anymore.’ He said, ‘You’re a little impulsive, and to be impulsive with a car is not good. We couldn’t defend you. You couldn’t have hired a lawyer to defend you.’ And my snarky kind of reaction was to say, ‘I think we’re better at picking lawyers than we are at picking doctors,’  but I stopped. And I said, well, I’m going to bicycle more. And so it’s kind of an approach to things. The way I’m coping is by having a bunch of activities that stimulate my body, stimulate my mind, allow me to sleep, and that is how I am coping.”

Adopting new pursuits:

“One my friends, Mary Selk, who I know from when our kids were young said, ‘Roy, you have Huntington’s Disease. You might wanna try Qi Gong.’ So I did, and I loved it. I just loved it. And it was like–It was just beautiful. It was like yoga in motion. I just loved that practice. I loved having a bunch of friends to do an activity with, who knew me well.

Roy (left) pictured leading a weekly Qi Gong class in San Francisco. (HOPES)

 

We have a chorus, the Berkeley Community Chorus & Orchestra that has 220 people in it, so a lot of people, but it’s really wonderful. And the day of the week when I have choral rehearsals, Monday, and Qi Gong, it’s my best day of the week.

We’re learning a piece in Russian called Alexander Nevsky. I don’t know if you’ve ever heard of that. It was a movie, a Russian movie, made in 1938, and the subplot of the movie is in the 12th century: the Teutonic Knights from Germany, from the Holy Roman Empire are invading Russia, and Alexander Nevsky rises from the peasants to lead them, and there’s a battle on the ice. So all this is gonna be, all this is gonna be what I’m learning, experiencing in the fall. I feel so lucky for that.

The day when he brings the chorus—we hire an orchestra and soloists—the day that we have the chorus, the soloists, and the orchestra together – the orchestra is about 15 members—it can be so exciting. In fact, one of the times when we did that, that came upon me. I found that I didn’t wanna be anywhere else. And I mean, it’s a unique feeling, but a wonderful feeling. You don’t need to be anywhere else. And the performance was really neat.”

A favorite memory:

“For the 50th anniversary of my chorus, we performed a piece called Britten’s “War Requiem” which was written after World War II. It was a masterpiece. I went on a retreat with the chorus, and it was really neat. The person who was running it was the music director of the San Francisco Symphony / Chorus, and he was fantastic. I felt so good. I came back to Qi Gong the next day, and one of the people, my friend Sierra, says, ‘I don’t know what you’re doing, but keep doing it.’”

(Click here for Part 3: Looking Ahead)

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