Multiple Sclerosis affects 11,000 Utahns

Intermountain Catholic

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Scott Posselli (front right) prays the Chaplet of Divine Mercy with his prayer group Bob Winfield, Liana Calicchia (back left) and Teri Calicchia, along with Winfield's two dogs Cali and Rio.IC photos by Chris Young

SALT LAKE CITY — "The network of people affected by multiple sclerosis (MS) goes well beyond the 11,000 Utahns who have been diagnosed. It also affects their families," said Brittany Clark, communications associate of the National MS Society Utah State Chapter. "Every 60 minutes, someone is diagnosed with MS, and that is why we walk. The chapter held an MS Walk April 8, at the Gateway with 1,734 participants raising $201,578.

The MS Society will also raise funds and awareness by holding the 2006 MS 150 bike tour June 24-25 at the Cache County Fairgrounds in Logan. Cyclists will pedal 40, 75, or 100 miles each day.

Kevin Kruse joined a cycling team two years ago because his mother has MS. Last year his team raised $70,000. Half of his team has family members with MS, the other half like the challenge of the ride because it is fun.

"I think I have had MS for a long time, because when I look back on my childhood, I used to run into walls and often felt off balance," said Annette Symosky. "I was nicknamed ‘the klutz.’ Symosky and her family are members of St. Martin de Porres Parish, Taylorsville

Symosky became very ill in February 2001, with an ear infection and felt dizzy. She was so dizzy she was confined to a wheelchair. By the time she sought out a third doctor’s opinion, she was in tears.

"Something is wrong with me, I feel it, I know it," said Symosky, who thought she had a brain tumor. I had an MRI (Magnetic Resonance Imaging), which showed I had MS. When they told me, I fell to the ground and cried. I started to read everything I could about MS."

According to the National Multiple Sclerosis Society, MS is a chronic, sometimes disabling disease that attacks the central nervous system (brain, optic nerves, and spinal cord). Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS in any one person cannot be predicted.

MS is thought to be an auto-immune disease. The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers of the brain, optic nerves, and spinal cord (the central nervous system). The damaged myelin may regenerate or form scar tissue (sclerosis). Often the nerve fiber is also damaged. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses to and from the brain are distorted or interrupted.

Symosky was treated with steroids and was given a spinal tap, which indicated myelin in her spinal fluid. She was lucky because MS cannot always be easily detected. Her MS went into remission for four years, during which she had mini episodes of MS. Then one day she had a major attack (exasperation) in which she had double vision and was sick for week. The week ended with her waking up screaming because her left side had become partially paralyzed.

"I was in bed and treated with prednizone intravenously for six weeks," she said. "Most of the paralysis went away in about eight weeks, however I still have problems with my left hand. I was terrified and I did not really care if I lived or died. When this happened I asked the doctor if I would walk again, and he could not give me an answer. MS is so unpredictable you never know from one day to the next what to expect and if it will leave permanent problems."

About eight months later, she woke up one morning and the front half of her right side was paralyzed. The next day her front side was fine, but the right half of her back was in excruciating pain. It turned out to be shingles.

"Now every time I get sick, I cringe," said Symosky. "Every MS patient is different. It is a constant struggle. I have constant fatigue, and bouts of depression. What makes me sad is that my three daughters, who are 3, 6, and 8 years old, are troubled that I am always tired. I do not want to be in a wheelchair, I want to play with my kids. But by about 1 p.m., I need to lay down and rest because I can no longer function.

"I hate the way people stare at me and treat me," said Symosky. "My oldest daughter came home one day and said another little girl said I looked funny. It is hard. I also worry about being a financial burden because MS can be expensive. I am afraid my husband will get tired of it, and trade me in for a healthier model. I feel sad and guilty about what I am putting my family through, and the worst thing is I feel homebound. I have come so close to being in a wheelchair, that I think I am now emotionally prepared to accept it."

Symosky said her mother was her life line, but was killed in a car accident three years ago, which is still very difficult for her to talk about, and her father lives in Oregon. But she receives a lot of support from her husband, her aunt and the people in their parish.

"It is my kids and my faith that keep me going, because it would be really easy to give up," said Symoksy. "Some people view my sense of humor as immaturity, but I use humor to keep myself sane. If I did not laugh at things, I know I would sink into depression. I try to use humor to hide the pain because I do not want people to know how much this affects and hurts me."

Scott Posselli, a member of St. Olaf Parish, Bountiful, also suffers from the devastating effects of MS. He said he is lucky because he does not have pain, although he is confined to a wheelchair. He hopes to be able to take Tysabri, a monoclonal antibody given by infusion into a vein every four weeks. The drug was on the market for four months as a therapy for relapsing MS, until it was withdrawn from the market in Feb. 2005, due to safety concerns. Tysabri is currently being re-evaluated by the U.S. Food and Drug Administration for its possible return to the market.

Posselli said he would like to try taking Tysabari because he thinks it will help him get out of his wheelchair and back to walking with a cane. Posselli was diagnosed with MS at age 27, but it was not until 20 years later in May 1992, that his symptoms became severe. He said recent studies show that people get MS between the ages of 1 and 3, and it lies dormant in their body until they reach young adulthood.

" I was a loader at a Smith’s Food store, and also a camera man for the Utah Jazz and KSL Television, where I taped commercials," said Posselli. "After being diagnosed, I was only able to work a few more years before I went on disability in 1994. I am blessed because now others being diagnosed with MS are having a difficult time getting on disability.

"I have a lot of support from people in my parish, and I deal with it by praying a lot," said Posselli. "I pray the Divine Mercy Chaplet every day, and I meet with a prayer group once a week. I pray in adoration before the Blessed Sacrament once a week, and I attend Mass at least three times a week. I am an old altar boy who likes going to Mass."

Posselli is presently living in a nursing home and said it has been really hard to lose his independence. He said he is hard-headed and it is difficult for him to have to depend on others for help.

"Depression can happen easily, but it is how you choose to approach MS that makes the difference," said Posselli. "The only pain I have is when I think about the past and how my life could have been. I have to laugh at myself and with my friends to stay sane. I have an "Oh well folder" I place things in, meaning I have to say Oh well because I can’t do anything about my situation. MS will not kill you, but you have to take care of yourself and keep your immune system healthy." Posselli has three children and one granddaughter.