As Dr. Timothy West watched, Jason Buckley walked down a hallway at the Cleveland Clinic Lou Ruvo Center for Brain Health with a cane.
“Man, that’s great, you were riding a scooter or on crutches not that long ago,” said West, who is treating Buckley with a drug regimen and targeted physical therapy to relieve the symptoms of multiple sclerosis, MS. It is an often debilitating disease for about 400,000 people in the United States in which the body’s immune system eats away at the protective sheath that covers a person’s nerves, a process that interferes with the communication between the brain and the rest of the body.
His increased mobility had the 36-year-old Buckley smiling Wednesday. So did something else West told him: The MS program at the Ruvo Center has been awarded a grant of $1.35 million over three years by the Conrad N. Hilton Foundation, allowing patient participation in research trials, the funding of additional staff, the purchase of diagnostic equipment and the expansion of social service, community outreach and education programs to underserved communities throughout Nevada.
“To me, it means we’ll have access here to the latest drugs in clinical trials,” Buckley said. “Now I don’t have to move. There’s one drug I hope to use that looks good at stopping progression of the disease. It’s very promising. I’m super excited.”
Over five decades, the Hilton Foundation has awarded more than $18 million in grants to researchers and medical practitioners in hopes of finding a cure and improved quality of life for those affected by MS. Marilyn Hilton, the late wife of former Hilton Hotels chain co-chairman Barron Hilton —- his father, Conrad, founded the hotels —- died of complications from MS. In 2001, the Hilton Foundation opened a MS center in Marilyn Hilton’s name on the University of California, Los Angeles campus.
“When someone you love is afflicted with MS, it opens your heart to the suffering that others go through,” said Hilton Foundation CEO Steven M. Hilton, whose mother had the disease. “The Lou Ruvo Center is helping patients and their families cope with this disease and is poised to make an important contribution to the fight against MS.”
People with severe cases of MS may lose the ability to walk or speak clearly. MS can be difficult to diagnose early in the course of the disease because symptoms such as numbness and double vision often come and go.
West, the only MS specialist in Southern Nevada, has seen more than 1,400 patients since the MS program opened at the Ruvo Center about 16 months ago. In the coming year, West said he believes the Cleveland Clinic will add another physician to the MS program in Las Vegas.
The National MS Society estimates there are more than 2,500 people with the disease in the Las Vegas Valley.
Comprehensive care for MS at the Ruvo Center, West said, will involve a four-pronged approach of education, social work, research and his medical team.
He is modeling his program after the Mellen Center for Multiple Sclerosis Treatment and Research at the main campus of Cleveland Clinic in Cleveland.
West said the grant money will allow the MS program to be involved in its first clinical drug trial “in a couple months.”
With the new money, he will have the funding for a nurse practitioner, physician and medical assistant and a social worker. To better serve Spanish speakers, most staff will be bilingual. A library will have titles both in English and Spanish.
Diagnostic equipment to be purchased with the grant will allow West to see visual changes in the brain, he said.
“But we just can’t take care of medical needs here,” he said. “We also have to deal with emotional, cognitive and urgent care needs. We need to do counseling. The divorce rate is over 70 percent for people with this disease. So many have depression. And the unemployment rate for those who have the disease for 20 years is over 80 percent.”
Buckley, who was diagnosed with the disease more than 10 years ago and is now divorced, said he has been to more than 100 doctors in the past 10 years, and West is the only one that has been able to help him.
“Nobody else really specialized in it, and they basically said there was nothing they could do,” Buckley said. “He explained what we could do and it all made sense.”
Nearly all of the symptoms and complications of the disease —- numbness in the limbs, loss of vision or double vision, memory difficulties, tingling or pain in parts of the body, electric-shock sensations that occur with certain head movements, lack of coordination, fatigue and dizziness, problems with bladder, bowel or sexual function – Buckley said he has suffered.
Sometimes, he said, his body feels as though it has been dropped in ice cold water, and “everything seizes up … then I’m supposed to walk.”
Because he began to miss too much work, Buckley had to retire in 2009 from his position at the College of Southern Nevada as director of infrastructure services, where he oversaw the workings of the computer, phone and data system.
He lives on Social Security disability and another disability insurance.
If his health allows, Buckley said he would like to start a program that would offer free computer help to the disabled.
“I could train people, repair their equipment,” said Buckley, who said he spends a lot of his time on the computer.
But there’s something he dreams about often.
“I’m hoping one of these drugs Dr. West can get here now in a trial will stop the progression of the disease so I can go back to work,” he said. “I like my life fine now, but I’d rather be back working.”
Contact reporter Paul Harasim at pharasim@review journal.com or 702-387-2908.