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Vi is for valor amid illness


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POSTED: Tuesday, October 28, 2008

Against the verdant backdrop, former ultra-marathoner, surfer and Ironman triathlete Vi Jones-Medusky sat atop her “;all-terrain vehicle”; at Kualoa Ranch and told the runners gathered around to appreciate every step they took. “;This is a day not to make money, but to create awareness,”; she said in her fading voice. “;By telling you how your motor neurons work when you're running—and to be grateful. We're blessed today.”;

               

     

 

 

No cure known for Lou Gehrig's disease

        Amyotrophic lateral sclerosis, or Lou Gehrig's disease, is a “;rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles,”; according to the National Institute of Neurological Disorders and Stroke.

       

There is no cure. And though it was first identified in 1869, the cause is still not understood. In 90 percent to 95 percent of cases, the disease appears to occur at random. The rest are inherited.

       

While it begins insidiously with problems such as tripping, muscle weakness or twitching, ALS eventually affects chewing, swallowing and breathing. Even the strongest athletes regress from cane to walker to wheelchair and eventually to motorized wheelchair. They also lose the ability to speak, yet the intellect remains sharp.

       

About 5,600 people in the United States are diagnosed each year, most commonly between ages 40 and 60. Although the disease progresses at varied rates in different people, life expectancy is 18 months to five years.

       

       

Diagnosed 4 1/2 years ago with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, the 56-year-old Jones-Medusky now conducts her life from a wheelchair. The greatest challenge of this devastating illness? “;Not being able to run and not being able to stand on my surfboard,”; she said quietly.

So what better way to raise consciousness about ALS than to host a 4-mile off-road adventure at Kualoa Ranch, where about 200 friends and supporters gathered earlier this month for Vi's Adventure Trek and Run?

Jones-Medusky's problems first became apparent when she ran the New York City Marathon in 2003 and hit the insides of her legs repeatedly with her feet. It turned out that she had lost the use of her toes. After her diagnosis, she dispensed with the pity parties, earned her master's degree in nursing and set out to make a difference.

“;Although we're losing our mobility and speech, I'd like people to know that our minds still work, and we're human and we have needs and wants just like you,”; she said. “;We also cherish the things we've lost—simple things like lifting up your fork, going to work, running and swimming. When this disease hits you, it seems like the world shrinks. Every day, you do less and less.”;

In the journey filled with loss, heartache and struggle, however, “;we've seen the goodness in a whole lot of people,”; said Jan Medusky, Vi's husband of 14 years. Both patient and caregiver need plenty of help adapting to the constant changes the disease presents. “;You have to adjust your mind and figure out a way to come to peace with the concept. You have to focus on what you can do, not what you can't do. It causes you to live more in the moment.”;

Former marathoner and expert horseman Paul Gagnon knows all about this. Using his walker for stability and speaking slowly, Gagnon, 63, explained that he was diagnosed with ALS in March 2006 after he tripped four times during a 25-kilometer race. His riding skills also began to fade as he lost the ability to balance on horseback. “;It's the worst thing that I can't run anymore,”; he said. “;Not being able to exercise, and just watching your muscles atrophy. I'm just thankful I can still stand.”;

The struggle to communicate is another frustrating element, explained Gagnon. His brain knows what it wants to say, but the vocal cords and mouth can't keep up. “;You have to train yourself to slow down, otherwise it's unintelligible.”;

Still, Gagnon pointed out that “;caregivers have the hardest time because they can't understand what's happening.”; Slowly, the illness consumes everyone's lives as the patient needs help getting dressed, eating, using the restroom and getting around. “;For them it's 24-7. The caregivers are the losers in this disease. I feel sorry for those who don't have close-knit families.”; But his smile remains intact, as does his positive attitude. “;I'm still having fun,”; said the former Navy submariner and engineer. “;It doesn't do any good to cry over spilled milk.”;

Vi seemed to feel the same way, too, clearly enjoying her time with athletes she once ran alongside. “;She's an exceptional person,”; said Jan. “;She makes it easy on the people around her.”;