Still Running The Good Race

A beloved member of Hawaii’s running community, Vi Jones-Medusky refuses to let Lou Gehrig’s disease slow her down, thanks to friends and family including (from left) Natalie Fonda,Glizza Asejo and daughter Malia Jones Stedman. But in May 2004 she was diagnosed with amyotrophic lateral sclerosis (ALS) and can no longer run, or even walk.

Yu Shing Ting
Wednesday - August 05, 2009
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Vi Jones-Medusky with grandson Spike and (from left) Natalie Fonda, Malia Jones Stedman and Glizza Asejo

Vi Jones-Medusky, one of Hawaii’s most avid distance runners until Lou Gehrig’s disease slowly took away her legs, refuses to slow down

Vi Jones-Medusky is a runner with a passion for life and a woman with a passion for running.

But in May 2004 she was diagnosed with amyotrophic lateral sclerosis (ALS) and can no longer run, or even walk. And while this disease may have slowed her down physically, Jones-Medusky chooses to move forward with that same great zest for life for which she was known - and beloved - in the running world.

People who know her probably wouldn’t be so surprised as she’s always been known as that bubbly runner trekking by with a big smile on her face and friendly wave. But what may be shocking to them is that someone so active and healthy could get a disease like ALS and end up in a wheelchair.

Anyone in her situation could easily and understandably get angry or sad. But Jones-Medusky says she has accepted her condition and credits her friends and family for helping her to remain positive.

Her supportive family includes husband Jan Medusky, daughter Malia Jones Stedman, sons Daniel and Mikala Jones, Daniel’s girlfriend Natalie Fonda, and Glizza Asejo, whom she describes as her hanai’d daughter.

“I’m really happy, look at all this help I have,” says Jones-Medusky, 57. “What keeps me happy is my belief in God, my wonderful family and friends, and that I like to help others and can give back.

“No one knows how people get ALS. But when you have it, you adapt to it and you learn to accept it. You have to, otherwise I think depression sets in.

Jones-Medusky, in her beach wheelchair, with son Daniel and his girlfriend Natalie Fonda in Bali

“For me, the hardest thing about ALS is not being able to move and get comfortable on my own. I can live with everything else, but when my hair gets in my nose and face and everybody is sleeping ... I’ve learned how to breathe and think through it.”

Jones-Medusky is also known for her generosity, and one way she’s giving back now is through the second annual four-mile Vi’s Adventure Trek and Run Sept. 20 at Kualoa Ranch. The fun run is presented by Hawaiian Ultra Running Team (H.U.R.T.) and the Muscular Dystrophy Association (MDA) ALS Division. All proceeds from the event will be donated to the MDA ALS Division and provide immediate support for 50 families living with this muscle disease in Hawaii.

“I want people to know about ALS and not to take their bodies for granted,” says Jones-Medusky of her purpose for the upcoming Trek and Run. “Get out there and breathe the fresh air.

“Also, ALS is an orphan disease, because compared to diseases such as breast cancer, heart disease and diabetes, drug companies put all their money into these diagnoses, because so few people have ALS that it’s not popular. Therefore, research money (for ALS) usually comes from family and friends of victims.”

ALS, which is commonly referred to as Lou Gehrig’s disease, progressively destroys nerve cells controlling muscles, ultimately paralyzing voluntary movement.

According to the National Institute of Neurological Disorders and Stroke, as many as 20,000 Americans have ALS, and in 90 to 95 percent of all ALS cases the disease occurs apparently at random with no clearly associated risk factors.

“At first I thought I had a running injury in my calf that wouldn’t go away,” recalls Jones-Medusky. “But I kept running.”

Then in 2003, she entered herself, Malia and her sister-in-law Nancy Sagon into the lottery for the New York Marathon.

“We all got in and went to New York, and when the race started I knew I could-n’t run, so I said to them go ahead I’ll meet you at the finish,” she remembers. “Then 10 miles into the race my ankles were crossing and hitting each other. I had these huge bruises on both sides.”

Jones-Medusky with son Mikala and granddaughter Isabella at Kaimana Beach

Despite the pain, Jones-Medusky finished the marathon, and at a great pace, crossing the line at about five hours and 45 minutes.

Before going to New York, she already treated what she thought was a running injury with physical therapy. But a couple of months after the marathon, her legs still didn’t feel right, and she decided to see her doctor again.

“He thought I had compartment syndrome, and told me to run around and then come back up to his office,” she remembers. “I did and then he touched my calf muscles and they weren’t hard, and I could-n’t tiptoe. So we did a muscle nerve test and that’s when I found out I had ALS.

“At first you can’t believe it because you’re functioning normally. It’s a very slow process where one thing leaves your body at a time.”

Jones-Medusky, a long-time member of the Faerber Flyers running group, has completed more than 15 marathons, five Ultra Marathons and three Ironman triathlons.

In addition to good looks, it’s apparent that her active lifestyle also has been passed on to her children. Daniel and Mikala are both professional surfers, and Malia is a former pro surfer and model.

“At first I knew nothing about ALS, I didn’t even know who Lou Gehrig was,” says Jones Stedman. “Even when she first got it we still didn’t get it because she was still the same, but not. When somebody goes from swimming two miles a day and biking 50 miles after that and then running six miles, when they slow down they’re still faster than you are, so it’s not like anything was wrong with her. She just didn’t do all of that.

“It’s only when the day-to-day things happen that you realize how it impacts you. It went from her not exercising to when we go Christmas shopping you’d have to hold all her bags for her, and then from her saying do I really need this cane to having a walker to seeing her in a wheelchair. But she still makes us keep up with her, you know.”

Jones Stedman, 32, has been splitting time between between Sydney and Hawaii for the last four years before recently moving back to the North Shore.

“I came back to Hawaii for my mom, and also having a baby, I think Hawaii is such a great place to bring up a kid,” says Jones Stedman, who has a 4-month-old son Spike with pro surfer Luke Stedman. “My relationship with my mom is we’re like best friends, but she’s still my mom at the end of the day. We used to run together, surf, swim, work out and go

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Most Recent Comment(s):

Vi was an inspiration when she was fully mobile. Since suffering with ALS, her ability to inspire has grown exponentially as she handles it with such grace.

Thank you Ms. Ting for this great article.  Violet is an inspiration to everyone for appreciating our lives and making the most of our situations no matter what.  Mahalo again for writing about Vi, a remarkably courageous person.

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