Jones-Medusky refusing to give up in face of ALS
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By Michael Tsai
Advertiser Staff Writer
By Michael Tsai
In considering Vi Jones-Medusky's latest adventure, it is perhaps helpful to ponder the potential outcomes when the irresistible meets the immovable.
For Jones-Medusky, an accomplished ultra-distance runner and triathlete from Hawai'i who is battling Lou Gehrig's disease, the answer lies not in a single cataclysmic moment, but in the dogged accumulation of days in which the inevitable victory of the disease is nudged to its heels, however temporarily, by joyful determination.
Jones-Medusky will be the athlete-of-honor at Vi's Adventure Trek and Run, a 4-mile off-road race scheduled for Oct. 18 at Kualoa Ranch.
Jones-Medusky, who will participate in a wheelchair, is hosting the event in conjunction with the Muscular Dystrophy Association's ALS Division and the Hawaiian Ultra Running Team to raise awareness of amyotrophic lateral sclerosis, a relatively rare but fatal disease that affects nerve cells in the brain and spinal cord.
Proceeds from the event will be donated to the MDA-ALS division to support local families affected by the disease.
"Running has always been a passion for me and I've always wanted to give back," Jones-Medusky said. "I want more people in our community to be aware of ALS because there are families here who are really in need."
The disease affects roughly 1 out of every 50,000 people nationwide. There are 80 to 100 known cases in Hawai'i, according to MDA.
"ALS research isn't funded by the big pharmaceutical companies because it doesn't affect enough people," Jones-Medusky said. "It's funded by people like you and me."
Mother of professional surfers Malia, Mikala and Daniel Jones, Jones-Medusky has long been a familiar face in the local racing scene.
Her seemingly endless list of athletic achievements includes marathons in New York, Portland, Maui and Honolulu, three Ironman triathlons (California, Canada and New Zealand) and ultra-marathons like the Tantalus Triple Trek and the Haleakala Run to the Sun.
It was around the time of the 2003 New York Marathon that Jones-Medusky got the first inkling that something was amiss with her body. She had a lingering pain in her calf and, though she hadn't realized it, she had finished the marathon without the use of her toes.
ATHLETES HIT HARD
For reasons yet to be established, ALS demonstrates perverse preference for athletes. It also is notoriously difficult to diagnose; only after everything else is ruled out can a firm determination be made.
"During the diagnostic process, her doctors were actually hoping she had a spinal cord problem to explain why her muscles were wasting away," said Jones-Medusky's husband, Jan Medusky.
After six months and a battery of tests, Jones-Medusky's doctor arrived at an ALS diagnosis-by-exclusion. Jones-Medusky, a nurse at Kaiser, knew enough about the disease to understand that her superb conditioning would eventually be undone as motor neurons degenerated to the point where they could no longer initiate muscle movement.
The average life span for a person with ALS has been estimated anywhere from 1 1/2 to 5 years, though the known extremes range from a few months to more than 20 years. Jones-Medusky has been aware of her disease for 4 1/2 years.
Still, the woman whose ability to endure to the end made her a respected ultra-athlete has proved stubbornly indifferent to other people's timetables. No longer able to complete the 37-mile Haleakala Run to the Sun by herself, she continued to compete as a member of a relay team. Unable to stand unassisted, she still swims in the ocean whenever she can.
And no longer capable of maintaining the rigorous training schedule that consumed so much of her days and weeks, she recruited a few of her fellow nurses to join her in earning a master's degree in nursing.
NOT SITTING STILL
"I don't think I'll ever sit still," Jones-Medusky says. "Even when I'm in my wheelchair, my mind is moving."
Dealing with ALS in her usual positive way, Jones-Medusky has become a important figure in the local ALS community.
"Vi is energetic, always upbeat, a constant source of inspiration for our staff and for families (of people with ALS)," said MDA healthcare services coordinator Jennifer Li. "With her, there's this exuberant, overwhelming outpouring of joy always. She's funny and witty and just fun to be around."
Still, Jones-Medusky has no illusions about her prognosis.
The disease has progressed to her arms and hands as well as her lower body. She needs help to go to the bathroom. She can't turn over in bed. She requires some sort of assistance 24 hours a day.
Like many other ALS families, Jones-Medusky and her husband have benefitted from the resources, information and support available through MDA and, in particular, the ALS support group founded by Divina Robillard. Though the group is small, Jan Medusky said the mutual support it provides is invaluable to people with ALS, as well as their caregivers and family.
Jones-Medusky said she hopes to work with MDA to organize a road race in May — ALS Month — to benefit ALS research and to support people with the disease. If that's successful, she hopes to bring the race to other states.
"As the disease progresses, it gets very expensive," Jones-Medusky said. "I'm lucky, but there are other families who are dealing with the disease that need help. As a community, we need to be more aware of what this disease is and what it does."
Reach Michael Tsai at firstname.lastname@example.org.