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Michael Curiel, M.D., and Timothy Allen, M.D., Fort Collins Neurology, P.C.

Tori Case is mean as spit and crazy too – at least that’s how she describes herself. However, anyone who meets her isn’t fooled. Case lights up the room with her fiery spirit, warm and ready laugh, and twinkling blue eyes that seem to say, “I know.”

She knows she defies the wheelchair-bound stereotype of someone with MS. “And I’m not going to use a cane, like some old lady,” she says. Case knows it is her unrepentant obstinacy that has kept her mobile through 31 years living with MS. Asked about the limitations that MS imposes on her lifestyle she says, “I don’t give a damn what I’m supposed to do! I’m going to do what I want.”

Case’s nervous system began to show signs of the disease at age 16, before she was really aware of it. Her mother, a healthcare professional, noticed her daughter’s eyes had stopped tracking from left to right and she was turning her head to see her periphery. Walking had also become difficult; Case says, “I looked like I was always going up stairs because my feet were numb and I couldn’t feel where the floor was.” After a spinal tap diagnosed probable MS, Case’s mother chose not to tell her daughter, fearing her flighty, rebellious teenager wouldn’t handle it well.

“She was probably right,” muses Case, “but I kept saying to myself, ‘Why is this happening?’”

It took two years, and Case’s future husband, Terry, to finally break the news to her that she had MS. “My mother told Terry about it when she could see we were getting serious so he would know what he was getting into,” she remembers. The young couple had moved to Vail to begin their life together when Case’s symptoms became debilitating. “It was horrible. My legs and hands didn’t work, I couldn’t hold things or walk the way I wanted to, and I still didn’t know why. I was really depressed.”

They returned to Greeley to see her doctor and be closer to family. After yet another vague medical appointment with more questions than answers, Terry finally told Case that she had MS.

“I remember screaming ‘No! They’re wrong!’ I thought the doctor was a liar,” says Case.

It took her and her husband a long time to adjust to the diagnosis and its relapsing-remitting pattern. It hasn’t been easy, but 29 years and four children later, Terry and Tori Case are still working through it together. “We just celebrated our 27th anniversary,” she smiles.

Tori Case was diagnosed with multiple sclerosis 31 years ago, when she was only 16.

In Her Case

Case says, “MS has been like a roller coaster for me. Things will be really great for a while and then…” she pauses, sifting through the myriad examples, “one eye goes blind.” She cites the symptom with a shrugged shoulder. “Then I wear a patch for a while until it goes away.”

“Tori has one of the most severe types of MS (Secondary-Progressive),” says her neurologist, Timothy Allen, M.D., of Fort Collins Neurology, P.C. “She has done extraordinarily well with the newest medications. They make a huge difference for prevention of disability.” Case injects herself with the medicines weekly. “Twenty-five years ago, most people diagnosed with MS would have been in a wheelchair within three or four years,” he says. “Attitude makes all the difference.”

“I love Dr. Allen,” says Case. “We connect. He says my MRIs show so many brain lesions that I should be in a wheelchair, but I just refuse. I still don’t feel like I have MS. The symptoms come and go, but my frame of mind keeps me well. I just refuse to be told what I can do, even by my own body.”

Paul Joncas was diagnosed with multiple sclerosis in 2004.

Prognosis and Treatment

“Common symptoms of MS include numbness, tingling, and sensory problems like weakness, vertigo, or poor balance,” explains Dr. Allen. “However,” he cautions, “you can’t jump to conclusions with these symptoms. There are more common causes for numbness or tingling. But if they happen over a number of days or occur through half of the entire body, it may be MS,” he says.

Dr. Allen, who did his undergraduate work at Colorado State University and medical education at University of Colorado, is certified by the American Board of Psychiatry and Neurology. He has been a partner at Fort Collins Neurology since 1997.

Dr. Allen’s partner, Michael Curiel, M.D., elaborates further: “There are different levels of MS: possible, probable, and definite.” With a definite or probable diagnosis, treatment can begin. “It’s better to be proactive [with probable MS] and start treating to suppress,” he explains. Cases of possible MS are usually observed over time.

Dr. Curiel is one of the founders of Fort Collins Neurology, which originated in 1984. He completed his graduate studies at the University of Arizona and is a Diplomate of The American Board of Psychiatry and Neurology.

Drs. Curiel and Allen typically recommend one of five major disease suppression medications for MS treatment. Some of the medications can be injected by the patients; others are administered by IV infusion at their office. Diet, exercise, and stress control are also important to disease management.

Dr. Allen says, “MS is not a death sentence or a disability sentence like it used to be. With access to knowledge, better diagnostics, and better meds, it’s very manageable.”

Colorado Ranks High

The local chapter of the National MS Society reports that Colorado has one of the highest incidences of MS in the nation; there are 9,000, or one in every 540, Coloradans living with MS. Allison Hines, Regional Development Manager for the Colorado Chapter of the National MS Society, explains why the numbers for Colorado may be so high: “Colorado has a very mild climate and people living with MS are adversely affected by the heat. Many people find the climate in Colorado more suitable.”

A Patient With Patience

Paul Joncas, who has Relapsing-Remitting MS, thinks Colorado’s high incidence rate is primarily due to non-natives like him who moved here for the climate and excellent resources. “I can’t ask for a better place to have this disease,” he jokes, but continues seriously, “I’m utterly grateful to be in Fort Collins and to have had the good fortune to connect with Dr. Curiel.”

Dr. Curiel notes 85 percent of people diagnosed with the disease have Relapsing-Remitting MS. Joncas has tried many medications in the five years since his diagnosis, but is currently holding most of his symptoms at bay with a monthly IV infusion of an immune-modulating drug.

Joncas is like many people with MS. He spent much of his adulthood with symptoms that would come and go, but never last long enough to get a diagnosis until all of the niggling annoyances like blurred vision, fatigue, and numbness on his right side occurred at the same time and refused to disappear. At 52 years old, Joncas finally understood what had been going on all those years.

“My wife, Debbie, and I felt very confident in our course of action because of Dr. Curiel’s patience and concern.” On the day he was diagnosed, Joncas and his wife stood asking questions of Dr. Curiel for 45 minutes. “He never once looked at his watch,” says Joncas.

Joncas tried to continue to work for another year as pastor at Shepherd of the Hills Lutheran Church in Fort Collins, but his relapses were too frequent. Eventually he retired from the pastorship, but has continued to serve others through the MS Society. His recumbent tricycle has become a familiar site in the Bike MS event that covers 150 miles each summer.

This year, Joncas was honored by the Fort Collins MS Society office as the 2009 MS Champion. “Paul has demonstrated exemplary volunteer service by helping the newly diagnosed adjust. He maintains an extremely positive attitude,” says Hines.

Joncas, perhaps because his diagnosis came later in life, more easily accepts the changes that have transformed his world, like the two crutches he uses to walk. His jokes are quick and often self-deprecating. “Of all the things I lost because of MS, I miss my mind the most,” he quips about the difficulty in concentrating for long periods.

MS Misperceptions

Joncas often speaks to groups and mentors others with the disease. Asked to help others understand more about MS, he says, “We all have symptoms in common but no one’s MS is exactly the same as another person’s.”

Joncas answers blunt questions honestly for those who come to him through the MS Society. “Doctors can sometimes be evasive about the hard questions,” he says. “New patients want to know: ‘Will this shorten my life? Am I going to end up in a wheelchair?’”

“While it’s true no one can ever know for sure, the vast majority of people never end up in a wheelchair. The fact that I use crutches is unusual. Most people with MS are able to continue their careers with some adjustments.”

“I think of myself as lucky,” he says. “Twenty years ago the prognosis would have been different. Today, with new drugs, MS doesn’t necessarily shorten life expectancy. I see the changing symptoms as something I adjust to. I have good days and less good days. There is no point in having bad days. If all I get done in a day is reading a few pages in something [due to fatigue], I still got something done,” he says smiling.

Joncas is hopeful about the future of MS: “The current research is remarkable. There are oral drugs coming. Lab tests have had good luck in getting myelin to grow back on mice, which may be the road to a cure. That course of treatment may not be able to repair damage for people like me, but those who come after me may benefit.”

Life Lessons

Though their journeys with MS have been drastically different, Case and Joncas have arrived at many of the same conclusions: life is what it is. “There is no promise that life is going to be perfect,” says Joncas.

Case agrees. “I figure life’s too short. There’s nothing I can do about this, so why wallow?”

“My outlook has changed,” says Joncas. “MS keeps me in the present. I can only deal with what’s right now. I can’t worry about the past or the things I can no longer do. I can’t look too far ahead, because I don’t know what I will be able to do tomorrow.”

Planning for the future with MS is tricky, however a few things are certain. Case and Joncas will continue to use their challenges to make the most of life, often through laughter. Both will keep trying to reach out to make others’ days brighter. Both plan to continue stepping forward each day with grace, strength, and dignity. +