Gary Barg:  I so appreciate you spending time talking with us about osteoarthritis, this is such a big issue for family caregivers. And I have to say, as someone watching you for years on some of my favorite television shows, it’s almost implausible to believe you were dealing with this while you were doing those shows.  How did you find out that’s what you had and what did you do about it?

Jane Kaczmarek:  First of all, my father had both of his hips replaced and so, when I started having pain, I suspected that I might be a chip off the old block.  I’d limp, and I became very, very dependent on ibuprofen, which is a tremendous anti-inflammatory.  And for a while there, I know I was taking at least 20 a day.

Gary Barg:  Wow.

Jane Kaczmarek:  So I would make it through the day and since it was an over-the-counter painkiller, I just assumed it was fine to be taking that much. When I was pregnant with my third child and working full time on Malcolm in the Middle, I had to stop taking ibuprofen through the pregnancy. I realized then how bad my hip was because I wasn’t numbing the pain anymore.  I was 46, almost 47-years-old, and gaining 70 pounds with this baby on a bad hip. My daughter Mary Louisa was born, I nursed her and I finished up that season of Malcolm in the Middle, and literally the day after we finished filming for that season, I l checked in the hospital and had that hip replaced.  That is part of the reason I was very glad the people from DePuy asked me to join this campaign to talk about this because I waited far too long.  I was in pain far too long.  I just wish I had done it years earlier.

Gary Barg:  You mentioned the campaign—it’s the Anatomy of Movement Experience. I love the name; what does it mean?

Jane Kaczmarek:  It’s actually the Movement Experience Exhibit.  People can walk through the experience of getting up out of a chair, getting in and out of a car, walking upstairs, and look at what’s involved in that process of movement. It’s an exhibit that is travelling around the country. One of the things they have is a 30-foot-long part of a leg, from the knee to the hip. People can actually walk through it and understand a little bit about how those joints are connected to what muscles and see how this whole thing holds together and works, and where relief from pain could come. If people go to the Web site anatomyofmovementexperience.com, they can find out where this exhibit is going next. There is a lot of great information and doctors would be available in their area who would be able to talk to them about pain they might be having.  There is a list of resources and symptoms that they might be experiencing.  We are just trying to get the word out and hopefully people won’t have to suffer the way I did.

Gary Barg:  Well, this is a really big issue for family caregivers; we lift our loved ones, we move heavy equipment, we struggle with wheelchairs, but the first thing we don’t do is care for ourselves.

Jane Kaczmarek:  Gary, you know, you really hit it on the head.  I just thought, I’m too young, this can’t be happening to me, I am too busy, I have got these children, this job; I will just take more ibuprofen. I would organize my days so I could do as little as possible.  One of the things I remember was driving to the mall and I couldn’t even walk through the length of it. I would park and get what I needed, then I’d go back to the car and drive to the other side of the mall to get what I needed there. Or when I was coming down the steps in the morning from my second floor bedroom, I would take down absolutely everything I needed for the day—books, change of clothes, sunglasses, anything that I might need because the idea of going upstairs to get anything was such a horrible idea.  I didn’t want to have that happen until it was nighttime and I had to go to bed.  I think when people are busy, they find a million excuses not to take care of themselves.

Gary Barg:  I just actually spoke with a gentleman who had a hip replacement recently and he said that it seemed like his life started over.  He didn’t have to make the walk arounds and the work- arounds anymore. 

Jane Kaczmarek:  I remember I would come into a room and immediately assess where there was a doorknob and where there was a counter and plan how I would kind of walk through.   Go over here and hang on for couple seconds, then go over there and hang on. It’s like being in a pinball machine.

Gary Barg:  I think you hit the nail on the head.  We’re scared; we are afraid of taking ourselves out of the war zone. I can’t care for me because how do I get someone else secure for my loved one? You are saying that it’s a relatively short procedure and a relatively short recuperation, and afterwards, you’re like new.

Jane Kaczmarek:  My mother is 84 and she was experiencing knee pain and a doctor said, “Oh you need to have your knee repaired.”  But even with her physical therapy after the repair, she never got any relief from the knee. I took her to my doctor here in California, the one who did my hip, and he said, “There is nothing wrong with your knee; you need a hip replacement.”  We found her a doctor in Milwaukee who was recommended by my doctor here in California.  And yet she said, “Well, I don’t want to go in the winter; I do not want Daddy to drive on icy streets when he comes to visit me in the hospital.”  You know, it was excuses like that.  But she is a great gardener.  Getting on hands and knees and digging in dirt in the beautiful Wisconsin summer in her garden is so important to her, she finally did it.  She couldn’t believe how easy it was; she couldn’t believe that she was back to her garden.  I was just in Milwaukee yesterday and her garden is as gorgeous as ever. I am just so grateful that she screwed on her courage and went and had it done because it was not a big deal and she knows that now.

Gary Barg:  You know it’s interesting about your mom—she was told that it was her knee.  Her knee was what was hurting.  But here is the other thing I have learned.  It all seems to resonate from the hip—your knee, your foot, your leg.  It’s almost a given that when doctors take a look, they often find that it’s all hip problems.

Jane Kaczmarek:  I, of course, was pretty angry and dismayed that my mother had to go through an unnecessary procedure that was very unpleasant and then to go to physical therapy where there was no relief. When I finally took her to my doctor and he said “You know, there is nothing wrong with your knee; it is fine and probably was fine.  This is all generating from your hip.”  And maybe the lesson there is for people who are experiencing knee pain, to check out their hips as well.  I was just disappointed that her doctor didn’t do that; that he immediately just thought knee replacement—knee surgery.   

Gary Barg:  True, true.  I always like to ask one particular question and that is:  If you had one piece of advice you wanted to impart to a family caregiver, what would that be?

Jane Kaczmarek:  Do not lose your sense of humor. My grandmother lived with my parents for the last five years of her life.  At 98, she was still living in her own house, doing her own cooking and cleaning. My parents finally decided she needed to be living with them.   She was so lucky and my parents know how lucky they were that they were able to take care of her.  She lived in a really nice room off the kitchen with her own bathroom, but it gets trying and it gets tough. When my mom and her mother, my grandmother, could laugh about it, it just kind of reminded me that we were really all in this together. This is a family member we loved and what a blessing it is that they are still with you and that you are able to help them. There’s nothing greater than being able to take care of an elder in those final years. I think my mother and father being able to laugh at some of the crazy, embarrassing things that were happening got them through some tough, tough patches.
 
Listen to the complete interview with Jane Kaczmarek.