The One Thing Henry Winkler Wished He Knew as a Caregiver

Featured Article, Healthy Aging, Healthy Heart, Healthy Living, Stroke
on June 13, 2013
Henry Winkler interview.

To a certain generation, Henry Winkler will always be The Fonz. But in the decades since Happy Days ended, the 67-year-old actor has added a long list of roles to his résumé: director, producer, children’s book author, activist, fly fisherman. But the role he’s most eager to speak about today is not any of these—it’s the role he played as caregiver to his mom in the ‘90s, as she recovered from a major stroke. For several years he has served as a spokesperson for Allergan, the manufacturer of Botox, which is now approved to treat a stroke side effect known as upper limb spasticity.  We spoke to Winkler about the challenges of caregiving, how dyslexia affected his career and acting with inanimate objects on Arrested Development.

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Spry: Why did you want to get involved in stroke awareness?
Henry Winkler:  My mom had a stroke in 1989 and died in 1998, and she had upper limb spasticity. So when I heard about this campaign, I thought it would be a good thing to chat about to people, because this new therapeutic use of Botox for upper limb spasticity has been amazing. About a million people have a stroke a year, and about 7 percent of them have upper limb spasticity about 3 months after a stroke. The secondary muscles in the arms take over for the weakened and damaged muscles—the main muscles—and freeze the arm into position. The wrist is bent; the fingers sometimes gnarl in a ball, now the fingernails still grow so they are growing into the palm. And a lot of times the arm is frozen out to the side, against the chest. There are therapies you can take by mouth, but they affect the brain and other muscles in the body. So now you got a relaxed upper limb, but your brain is weary. The other muscles are limp. But what I’ve seen with the therapeutic use of Botox, is that only the targeted area affected. Upper limb spasticity is painful, unsightly, embarrassing, and it’s difficult for the caregiver to even do something as simple as dress their patient. With the use of Botox you don’t get the use of your arm back but you’re now open to therapies that you wouldn’t normally be able to participate in.

Spry: What were some of the particular challenges your mom faced in recovering from her stroke?
HW: Well, she did her therapy. Then the therapy was over, and it wasn’t as effective as she wanted it to be. I’ve wondered what would have happened if this use of Botox had been available to her. Because what I saw was that when things aren’t working, you start giving up. Your joy drips out of your body. She wouldn’t even leave the house in her wheelchair, because it was so embarrassing. She didn’t even want to go for a push. And I wonder how her perception of life would have changed if this tool had been in the toolbox.

Spry: The experience you went through caring for your mom is something many of our readers are going through now.
HW: Let me just say this: My hat is off to caregivers. My respect is at full tilt for caregivers. I witnessed a single mom whose arm was frozen out to her side and her two daughters who I think were 12 and 15—they gave up their entire lives except for going to school to care for their mom. The dedication, the patience, just the wear of it all to consistently take care of somebody else—that’s a hero.

Spry: What would you say was the hardest part about being a caregiver for your mom?
HW: One is, I was in California being professional, and my sister was in New York [with my mom].  So it was tough to share responsibility with her, and when I couldn’t, I felt guilty. I was so appreciative for my sister, being there when I couldn’t be.

Henry Winkler with his mom

Spry: That’s so common. How did you try to provide care long distance?
HW: Support on the phone, daily chats, and then when I wasn’t working, getting to New York as often as I could. And no matter who you are and no matter how hard you try, convincing patients who have a different outlook is another whole issue. It’s almost like climbing Mt. Everest with no clothes on. There are so many people that are not as lucky as we are to live relatively close to your doctor. The chore of getting up and getting ready and going and then seeing if you’re even a candidate for the therapy is a very big commitment.

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Spry: What advice would you give readers who are in a tough caregiving situation right now?
HW: Allow yourself the feeling of, “You know what, this is hard”—and don’t feel guilty about that. Don’t think, “Oh, I shouldn’t have these feelings, I’m being disloyal. I’m not being a good person. I shouldn’t be thinking about me.” It’s OK to allow yourself to be honest about what you’re doing, because holding it in … eventually you explode like a teapot or a pressure cooker. So I think that simple thought is to me very important.


Spry: Was your mom’s stroke a wake-up call in any way about your own health?
HW: This is a very good question, because I think about the enormous amount of cheese that I eat—especially if it’s French, stinky and runny. I keep thinking I have got to get on some type of healthy regime. But my car will not drive down a block with a gym on it, no matter how hard I turn that wheel. (laughs) I haven’t made a lot of changes but just the thought alone has worked off so many calories. Nobody can be thinking about it harder than I can. (laughs)

Spry: You’ve written a series of 17 children’s books about Hank Zipzer, a boy who is dyslexic, based on your own experience with the learning disability. We have some fans in our office!
HW: Hank is a very funny guy because we use humor first. Some of the greatest compliments I get are children who write and say, “How did you know me so well?” I wrote the only truth I knew—which was me. But when I speak to kids, I want them to know, “I am no different from you, and if I can live my dream, so can you.” It’s a matter of tenacity, your own will, knowing what you want, and gratitude.

Spry: It must be tough because the age when it manifests is just when kids are figuring out who they are.
HW: Oh my gosh, it’s heartbreaking. The earlier it’s diagnosed, the better it is of course. Now you also have teachers who are overwhelmed because they have to teach the same amount of material to the fastest students and the slowest students, in the same amount of time. You have parents who won’t admit their child is dyslexic, or are embarrassed that they are the gift giver, because it’s hereditary. I met a mom whose 10-year-old was just diagnosed, and she was completely distraught that her son is now not going to the school that she wanted him to go to. The kid was crying because he had no idea what this meant for the rest of his life. I just took the child aside, gave him a hug and said, “I’m telling you that how you learn has nothing to do with how brilliant you are.”

Spry: Did your dyslexia ever present a challenge while you were learning lines?
HW: You know, reading is still impossible for me, and spelling is out of the question. But I was able to memorize if it was written well almost instantaneously. When I first found out at age 31 that I was dyslexic, I was unbelievably angry. Because all of that yelling and all of that grounding for naught. Now I realize that I maybe would not be on the phone talking to you if it wasn’t for not being dyslexic, because it pushed me.

Spry: What was it like returning to Arrested Development?
HW: It was magnificent, fantastic! We were shooting for several months, but [creator] Mitch Hurwitz didn’t have all his actors all the time, all together. One was doing a series, one was doing movies, and everybody was doing something. So he shot on an availability basis. In the episode where I went to the maritime board in my sailor outfit, I actually was on a green screen talking to two light stands, and they put [the actors playing] George and Lucille in afterwards so it was like we were all in the same room together.

Spry: Was that a challenge—to try to act with light stands instead of people?
HW: You know, as an actor your job is to act as if—as if I was an ambulance chaser, as if I was a lawyer who has no idea about the law, as if I’m in a room with people who don’t exist.