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An Interview with Roy Nierenberg: Part 3 of 3

An Interview with Roy Nierenberg

Part 3 of 3: Looking Ahead

By Linda Shin

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

(Click here for Part 2: Relationships and New Endeavors)

“HOPES: An Interview with Roy Nierenberg” continued…


“I’m active, but I have a feeling that being active and doing these things promote my health. The activity is part of the system and plan, and I mean, I think it’s really wonderful that I can do it—that I live in a beautiful place, bicycle most of the year, and go to Qi Gong, and be in my chorus. The other motivation came from my leukemia. I was very, very sick. I thought I might die. And yet when I got through it, it was like a second birth. And it made me feel that I should really continue.

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


Advice to patients with HD:

“For patients, understand the difficulties of someone caring for you. For example, my wife needs space. I mean I can’t have all my bubbly ideas with her and all the time because she’s needs to process it herself. And that is important to do, and she wanted me to be away 3 weeks during the summer, and I could. I visited with my mom, and that helped her somewhat. You have to, I mean, not wear them out.

And she has a Yahoo support group for care managers, which is useful. I can try to find it—try to reference it, and it’s where people can talk about it: ‘This is the problem I have. What do you think?’ And that was really helpful for her. In fact, the reason why we have separate computers is she didn’t want me kind of messing with – we used to share an e-mail account, and she says, ‘Nope! We need our own e-mail.’ But it was because she needed that privacy, and what she did is she extracted from like a big document of ‘if this happens do this; if this happens, do this.’ Because that’s the sort of problem-solver she is. Um, I mean, I really love the support group that Andrea Kwon has. It’s worth the two hours to get there. And um, I went to a support group in New York, twice. And uh, it wasn’t quite the same, but it was all right.

As a result, I asked Columbia if they could treat me as a patient. They said no, but I had an hour-long conversation with the social worker. She emailed me that I was phenomenal, and I sent this to HDSA’s main office and advocated that I should be a speaker on Living Positively with HD at the National Convention.”

The HD-COPE team in London. (Roy Nierenberg)


A personal hero and patient empowerment

“I have a hero! It’s a woman I know who has Parkinson’s disease, Sara Riggare. She’s smart and she inspires me all the time, and I met her in the States at a group called Quantified Self, where she participates. I saw a talk that she made in Amsterdam, “Quantified Self” about her pill taking, and tracking her pills, and developing a device that could measure how well she’s doing, because in Parkinson’s, they’ve got a whole bunch of drugs that they can get you, but the coordination of the drugs is still not there. But she is so fantastic; she was an engineer, then went back to bioinformatics in Sweden, and she’s figuring out patient empowerment. And she’s just a fantastic person. I have utter confidence in her, and love and affection. I think patient empowerment is really powerful, and I think it’s the future. We just have to get there.”

Goals for the future:

“Continue doing what I’m doing. Now, financially, we are not set up to hire people to physically take care of me, and my father at the end of his life, he was on Medicaid in New York. He had 24/7 people around. Mimi’s not capable of doing that or interested in doing that. So that’s not my future. So, I mean, I feel that there’ll come a time when we can’t do the same thing as we have. We may have to move, and California’s not set up for Medi-Cal covering Huntington’s. It’s just not set up that way. New York still is.

So, during a recent family reunion, I visited a Huntington’s facility in Rhinebeck, New York.  And I think it was brave of me to do that but I think it’s all right for me to check it out. I’m a friendly guy and I talked to a bicycle person. I talked to a woman who was really a firecracker named Bridget, who met the Pope recently, and she said, ‘You should move here!’ She wanted to recruit me. So, I don’t know if that’ll be what I do, but you know, I’m trying to figure that out, but there are a lot of steps before then.

I don’t know if you noticed, but when you drove up the hill, there’s a big hill. I have to bicycle up this hill every day, but that’s part of it. In other words, I want to have a bicycle gear that has a very big first gear, but secondly, having the challenge is what helps me sleep and all the other parts of it.”

Roy (center) at the Palo Alto Huntington’s Disease Support Group. (Mr. Hanson-Kahn)