Lani Roth, 39, walks with careful consideration. Though her teenage years were spent feeling out of balance, she didn't know, until diagnosed in 2000, that she had multiple sclerosis, a disease that attacks the central nervous system blocking messages from the brain to the muscles.
There is no cure for the disease, though research funds are raised annually through the National MS Walk. Part of the 70 plus chapters in the U.S., the Idaho Division of the All America Chapter oversees the Wood River walk to take place Saturday for the third year in Ketchum.
"People write the signs off," Roth said. "You stumble or have numbness, but everything has to be ruled out. I thought I had ALS because it's in my family."
Most recently from Solitude, Ind., Roth and her husband moved to Hailey two years ago. She is the office administrator for Sun Valley Adaptive Sports and the office manager for the Ketchum Office Club. As part of her job with Adaptive Sports, she recently took over as the coordinator of the MS Support Group that meets at 6 p.m. the first Monday of each month at the AmericInn in Hailey. Roth's personal goal is to raise $1,000 at the MS Walk.
"I stepped into that position because Adaptive Sports sponsors that group," Roth said. "There are 35 people in the Wood River Valley who are in various stages of MS."
She added that there may be more people who have MS but who haven't yet made it public. Despite the fact that celebrities such as Teri Garr, Annette Funicello, Montel Williams and singer Clay Walker have made their illnesses known, the public is still largely unaware of the disease's symptoms.
"There's still a stigma," she said. "It's incurable, and in some cases there's no treatment and no one knows what the cause is."
Based in Ketchum, Sun Valley Adaptive Sports works with many people with various kinds of handicaps.
"We provide sports and recreation," Adaptive Sports Executive Director Tom Iselin said. "Swimming, biking, mono-ski. We can do one-on-one in a particular sport, too. And there is a new chair being designed for paragliding."
"I'm waiting for that," Roth said with a grin, though Iselin assured her there was a long line of people waiting to be able to fly off Baldy someday.
Roth has what is called Progressive-Relapsing MS, which means that symptoms both come and go and will gradually get worse. This type is particularly rare and only occurs in about 5 percent of the people who have MS.
"I have to adapt everyday," Roth said. "The abilities I have today may not be the abilities I have tomorrow. I live with ability issues."
She still drives, though carpools most days to Ketchum for work. She works out and eats as healthy as possible.
"A positive attitude is the most important thing," she said. "And I have supportive friends and great jobs. It's really important to be productive. People don't understand. It's here today and maybe not tomorrow. The environment, temperature and climate can make a difference. Low humidity is the best.
"Depression is a big thing. You feel good but then your leg doesn't work and you just don't want to go to work. The first time I had to use a cane I just cried. I have to think every time I take a step. People with MS often walk along walls so that if they fall they can hold on."
Roth's eyesight was one of the first things to really fail. She had bifocals before she was 30 years old. Not long ago she had 28 cataracts removed.
"It affects every single aspect of your life," Roth said. "Sometimes I'm just tired, but you can only use that excuse a few times before people can think it's a cop-out."
Symptoms, which are unpredictable and vary person to person, can include numbness, migraines, tingling, pain, spasticity, fatigue and temporary paralysis. In fact, it was a moment of temporary paralysis that finally got Roth to a doctor who diagnosed MS. She had one of her children in the car and realized she couldn't move her left side. An accident occurred.
"People write the signs off," Roth said. "You stumble or have numbness, but everything has to be ruled out. I thought I had (Amyotrophic Lateral Sclerosis) because it's in my family."
As with other autoimmune diseases, the body attacks its own tissue. In the case of MS it's a fatty substance around nerve fibers called myelin that is eroded by scar tissue. Researchers still don't know what triggers this response. Two to three times as many women as men are diagnosed with MS, usually between the ages of 20 and 50. Each week 200 more people are diagnosed. It was not until after the car accident that Roth received the proper diagnostic tests: an MRI, a spinal tap and an evoked potential test.
Though there are some drugs that can slow down secondary progressive MS, "What we want is a treatment that stops progression and ideally a treatment that reverses progression," wrote Dr. Jerry Wolinsky, a Bartels Family Professor of Neurology and member of the graduate faculty of the Graduate School of Biomedical Sciences at The University of Texas Health Science Center at Houston. "We're not there yet."
For Roth, she's not there at all. Her form of MS has no effective drug treatment. Until that time comes, she picks her way through a minefield of obstacles, watching her step, carefully.
3rd annual MS Walk
- When: Saturday, Sept. 29.
- Registration at 9 a.m. at Forest Service Park in Ketchum.
- Walk begins at 10 a.m.
- 3.8 miles to St. Luke's Wood River Medical Center and back.
- Raffle tickets will be sold Wednesday and Thursday at the Hailey and Ketchum Atkinsons' Markets.
- For more information, call Nancy Ferries at 720-3581.
Courtesy photo
Lani Roth will participate in the MS Walk for the first time Saturday, Sept. 29.
