Sisters CJ Swanson (right) and Melinda Shore (left) on a day of shopping

CJ Swanson, 57, lives within two miles of her four older siblings in Broken Arrow, Oklahoma, and their family is close in more ways than just by proximity. “We’re liable to be hanging curtains one day, baking the next day, and going camping for the weekend,” she says. “We just love doing things together.”  

In 2011, when Swanson developed sharp, chronic knee pain, she started turning down her siblings’ invitations. Did she want to go to a basketball game at the University of Tulsa with them? The steps to and from their seats, plus the joint-stiffening hour of sitting, weren’t worth a basketball game, she decided. She told them she was too tired to go.  “I don’t know if my family realized it or not,” Swanson says.

But Swanson’s sister, Melinda Shore, 69, could tell something was wrong. “I could just see her struggling with getting up and down, going up and down just one step, like out of her garage,” Shore says. Some days, it seemed as if the light in her “baby sister’s” eyes had been dimmed.

Like 15 million other people in the United States, Swanson was suffering from osteoarthritis of the knee. Also known as degenerative or wear-and-tear arthritis, osteoarthritis is a chronic disease in which the cartilage of a joint wears away, causing progressive tenderness, pain, swelling, and stiffness. About 45 percent of people will develop osteoarthritis of the knee in their lifetime, and those numbers are only projected to increase.

For an entire year, Swanson tried to ignore the pain caused by her condition. A single foster mother of two babies under the age of two at the time, and a full-time customer service representative at a local orthopedic practice (ironically, she admits), she didn’t have time to slow down for knee pain. “I didn’t want to complain,” she says.

But one day, while stepping down from her sister’s porch, Swanson’s knee locked into place so severely that she needed arthroscopic surgery to remove fragments of knee cartilage that had broken free and impacted the mobility of her knee joint. It was then that she finally told her family what she had been experiencing.

.A sister’s pain

Melinda Shore, 69, from Broken Arrow, Oklahoma

Several years after her sister’s diagnosis, Shore was undergoing unrelated knee surgery of her own, when her doctor noted the beginning signs of osteoarthritis. Thus, it came as no surprise to her when she began having trouble stooping to tend to her prized Zinnias in her garden.

Shore, who had recently retired from the human resources department of the Broken Arrow public school system, started feeling the repercussions of each day’s movements at night. At first it was twinges of pain, but after a few months, “it was like someone had a hot poker that they had stuck in my knee,” she says. “The covers just even touching it, turning over, caused severe burning pain.”

Gardening became just too much. In early spring, when it would normally be time to get out to the flower beds, “I would just literally stand here at our living room window and look out,” Shore says. “I would think, ‘I’m not so sure that I can do this’ or, ‘I don’t even want to because I pay the price so bad.’”

While her younger sister had tried to hide the pain from her family, Shore didn’t have that option. Swanson wouldn’t let her. If she saw her older sister rubbing her knees or struggling to get up,  Swanson would call attention to it or launch a conversation about it, to help her process what was happening. “I think it helped her to talk about it and understand that this is not just ‘oh, my knee hurts,’” Swanson says. “This is ‘my knee hurts all the time, and I’m adjusting my life to take care of this.’”

.The apple doesn’t fall far from the knee

CJ Swanson, 57, from Broken Arrow, Oklahoma

Swanson and Shore joke that they “got daddy’s knees.” An assistant superintendent at a gas plant, their father would use multiple bandages to wrap his aching knees daily, but was never diagnosed with a medical condition. “We used to kid him a lot about his bad knees and, oh my goodness sakes, if I could take back some of those words,” Shore says. They realize now exactly what he had been going through.

The cause of osteoarthritis is not known, but there is a “huge hereditary component,” says Michael Langworthy, a clinical research surgeon at Southcoast Health Systems in Massachusetts, who specializes in osteoarthritis. Extra body weight is also a risk factor, as it puts more strain on the knees and creates “a constellation of physical issues like high blood pressure, hyperlipidemia (that is, increased cholesterol), and hypoglycemia,” Langworthy says, all of which can speed up cartilage damage. Knee injuries, like ACL damage, can also rapidly progress to osteoarthritis.

Having osteoarthritis doesn’t necessarily mean you will experience severe symptoms, Langworthy notes. “By keeping your muscles strong and pliable, doing things like yoga and conditioning, you can maintain relatively healthy joints for years,” he says.  

.Suddenly a spectator

Joe West, 68, from Appleton, Wisconsin

Joe West, a 68-year-old retired paper mill manager in Appleton, Wisconsin, had a mother with knee problems and had dislocated his right knee every year of high school playing sports.

For the most part, he held off the symptoms of osteoarthritis with weight-lifting, building the muscles surrounding his knees strong enough to provide support and reduce stress to the joint.

When he was about 50, he had to adjust his exercise routine due to increasing knee pain. That adjustment—lifting lighter loads and doing more repetitions—worked temporarily, but about a decade later, his knee joint had simply worn out. He was walking up the stairs to his office, overlooking the production floor at the mill, when he felt that first truly sharp pain. “I knew that it was bone on bone,” he says. “It stopped me right in my tracks.”  

From there, weight-lifting and the many sports he enjoyed—biking, golfing, and softball—became more difficult.

“I thought I would be one of these guys in the gym, the exception to the rule, where I could keep working out with the younger guys maybe looking at me saying, ‘I hope I can do that when I’m your age,’” West says. “Then, in the blink of an eye, it just goes downhill like somebody flicked a light switch and just shut it off. I didn’t think it would happen, that it would come on that fast.”

.When enough is enough

Joe West’s grandchildren

Each adjustment to cope with knee pain might not seem terribly significant. She has to put off weeding. He has to skip his favorite exercise class. She has to cook meals that don’t require her to stand at the stove for too long. But over time, they add up. And then the realization strikes: You’re not in control of your life anymore, the pain is.

For West, the changes that hurt the most were the ones he had to make when interacting with his grandkids. “I can’t play ball with them like I used to. I can’t run. I can’t get down when I’m fielding balls, so everything I did with them had to change,” he says. “Now, instead of a participant, I’m a spectator.”

West wasn’t the only one who noticed a difference. “It wasn’t as fun when his knees got worse, because we would have to do more things alone,” says Addison Grien, his 11-year-old granddaughter.  

Swanson felt the same sense of disappointment when she couldn’t do her usual routine with her foster children. “I couldn’t get down on the floor anymore. I couldn’t pick them up,” she says. And when she dropped her niece off at college, on move-in day, something clicked. Unable to go up and down the stairs to her niece’s dorm room, she realized how much she was missing out. Instead of pitching in and helping with the move, she says, “I was just walking around campus.”

It suddenly hit her: A chronic condition “really does change the way you do things, but it doesn’t have to interfere in my life to the point where I stop doing what I enjoy doing and don’t bother trying to find a way to change that,” Swanson says. Instead, she was ready to search for a way forward, no matter how long it would take.

To learn more about how ZILRETTA works to help reduce OA knee pain, visit ZILRETTA.com or talk to your doctor for more information.

Learn how these families found a way forward in part two of Joint Perspectives: Bending, but refusing to break.