Still good as gold

Locals who will compete in the MS Bay-to-Bay ride for Multiple Sclerosis in Orange County next weekend. From left: Kathleen Knox, Donna Felix, Jean Drummond, Brian Knox, Rachel Georgeson and Sara Morra. 

Kathleen Knox remains upbeat in her battle with MS

It all started innocently enough back in February, 2008. A fall on the slopes. A crick in the neck. “I thought I’d pinched a nerve,” said Sunny Slopes resident Kathleen Knox.

Knox, a vivacious and apparently ageless forty-something (I’ve known her for ten years and she doesn’t look a day older) was working at the time as a ski instructor at Mammoth Mountain.

Over the next seven to 10 days, however, the crick in the neck didn’t go away.

Instead, she began to feel numbness in her fingers. Then the numbness began to creep up her arm. She told her supervisor at the Mountain that something wasn’t right. A blurriness which developed in the vision in one eye confirmed it.

By March, local Neurologist Dr. Douglas Will had diagnosed Knox as having Multiple Sclerosis (MS).

The stats

As described by the National MS Society, “Multiple sclerosis is a chronic, unpredictable disease of the central nervous system (the brain, optic nerves, and spinal cord). It is thought to be an autoimmune disorder. This means the immune system incorrectly attacks the person’s healthy tissue.

Approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the numbers can only be estimated.

More than twice as many women as men have MS. Studies suggest that genetic factors make certain individuals more susceptible than others, but there is no evidence that MS is directly inherited. MS occurs in most ethnic groups, including African-Americans, Asians and Hispanics/Latinos, but is more common in Caucasians of northern European ancestry.”

Treatment

Once Dr. Will made his diagnosis, Knox was placed on a 10-day course of high-dose, I.V. steroids.

Sheet: Thus destroying your chances to play professional sports.

Knox: Yes.

There is no cure for Multiple Sclerosis at this time. There are, however, three common MS drugs on the market that have shown varying degrees of success at blocking new “attacks.”

In April 2008, Knox began using copaxone, which requires one daily injection. Knox said the drug is reputed to be 30% effective at blocking new attacks, though really, it’s anybody’s guess. All Knox knows is that she hasn’t had a new attack since the initial one, so she keeps using the drug.

The price is not cheap. According to a Bloomberg news report from March 2011, “Teva Pharmaceutical Industries Ltd. (TEVA) said it raised the price of its MS drug, Copaxone, to about $42,300 a year, a 39 percent jump since January 2010.”

The article goes on to say that, “The cost of the MS drugs, which patients generally take for life, now rivals that of cancer medicines such as Roche Holding AG (ROG)’s $50,000-a-year Avastin. The MS treatments may be out of reach for patients who don’t have insurance or don’t qualify for help from the companies, at a time when governments worldwide are seeking to rein in health-care spending.”

Fortunately, says Knox, insurance covers a lot of her copaxone cost. Nevertheless, when she was first diagnosed, one of her initial worries was that “This could ruin us financially.”

By us, Kathleen is referring to Brian, her husband of 18 years.

Psychology

Anyone who knows Brian knows that when faced with a problem, he is relentless in his pursuit of a solution. After Kathleen’s diagnosis, he dove into researching everything he could about the disease. Which was good for Kathleen precisely because it provided her some distance.

There is, she said, a significant psychological component to the disease. “Sometimes, my MS symptoms flare up just by talking about it,” she said.

“Not a day goes by that I don’t think about it. I think about MS all the time. But does it affect my day-to-day life? Not really. I don’t want to over-exert myself. I’m at risk of triggering it [an attack] if I let my core temperature get too hot. But riding a bike is okay. And one of the specialists I spoke to at UCLA said that he thought exercise was the most important thing I could do for myself.”

It’s hard not to think about. MS can strike at any time, and can affect anything run by the nervous system. “My biggest concern is the brain, and how an attack might affect me. I worry about my good eye (since the initial attack inflicted permanent damage on the other one). But I can’t dwell on what might happen, hasn’t happened.”

But you can’t help but dwell. “I ask myself, ‘Will I be able to walk? Ride a bike? Go on a bike tour in Europe with my husband?’”

In her initial fear at the onset of her MS, Kathleen wondered whether her husband would still love her.

That fear passed. What has replaced it is seemingly an even deeper intimacy. They appear to buoy each other. “You can’t tell someone has MS just by looking at them,” says Kathleen. “Because I act fine, he’s in denial, too. If I’m fine, he’s fine.”

The Ride 

Six locals will participate in the MS Bay to Bay Ride on Oct. 22 and 23, benefiting Multiple Sclerosis research.

The Ride covers 150 miles, starting in Irvine and finishing in Mission Bay. The Mammoth Spinners; Sara Morra, Kathleen & Brian Knox, Rachel Georgeson, Jean Drummond and Donna Felix, have shattered their $5,000 fundraising goal, already having raised $6,750.

Nevertheless, they’d still like to raise even more.

If you’d like to help, call any team member or stop by Access Art & Business Center in Mammoth for more information.

As Kathleen Knox said this week, she believes the research is paying off and hopes there will be a cure within 10 years.