Fairfield woman advocates for ALS patients
WASHINGTON, D.C. – A woman born and raised in Fairfield has dedicated her life to finding a cure for Lou Gehrig’s disease.
The disease, also known by its technical name amyotrophic lateral sclerosis, ALS, causes motor neurons in the body to die, which prevents carriers of the disease from using their muscles.
Orte became active in ALS awareness last year when her stepfather Mike Johnston of Libertyville contracted the disease. Johnston’s health deteriorated steeply after he was diagnosed in June. He died in a nursing home in January.
No blood test exists which can positively confirm a patient has ALS. Orte said patients are diagnosed with ALS when doctors have eliminated other possible diseases.
“This is the disease you really don’t want to get a diagnosis for,” she said. “ALS is like what cancer was 50 years ago. Fifty years ago, it was curtains. You didn’t have any hope or optimism.”
Orte said ALS carriers could live a few years after diagnosis, although her stepfather lived only seven months after his.
Johnston began noticing a problem with his muscles about six months before his diagnosis. Johnston fell occasionally, and attributed the problem to foot drop, a condition whereby the ankle and toes cannot be moved upward. Orte said his muscles became weaker and weaker, so he saw specialists in Ottumwa and Iowa City.
By the time of his diagnosis in June, Johnston needed leg braces to walk. A month later he needed a cane and by Labor Day he was using a walker. Orte said he required a wheelchair by October, and did very little walking after that.
Orte makes her home in Clear Lake. In September, she became active in an ALS support group in nearby Mason City. The Mason City ALS Association of Iowa Support Group provided her stepfather with a wheelchair and took a hospital bed to him.
Orte did her part for other people with ALS by raising $2,000 at an ALS walk in Des Moines last October. When Johnston passed away in January, the ALS Association, Iowa Chapter asked Orte if she would like to continue her advocacy for ALS patients by traveling to Washington, D.C.
“I said sure, because I’m so passionate about raising awareness and raising money for research to find a cure,” she said. “It’s like you’re a prisoner in your own body with this disease. Your muscles are too weak to do anything.”
Earlier this month, Orte went with a team from the ALS Association, Iowa Chapter, to participate in the National ALS Advocacy Day May 8-11 in the nation’s capital. The team met with ALS chapters from other states and listened to guest speakers talk about how ALS has affected their lives.
One of the speakers was former NFL player Steve Gleason, who communicated with the conference attendees via Skype. Gleason announced in 2011 he had ALS. He can no longer walk and has difficulty speaking. He cannot type with his hands but he communicates through an artificial voice which speaks what he “types” on a computer through a program that tracks what letters his eyes focus on.
The Iowa chapter met with staffers from the offices of Sen. Charles Grassley and Sen. Tom Harkin, as well as four of the offices of Iowa’s representatives. The team shared personal stories about the effects of ALS on their friends and family “Two people in our group have ALS now,” Orte said. “One of them can no longer feed himself. Another gal lost a parent to it, and another, a 19-year-old girl, lost a sister. Her sister lost the ability to blink or smile. When you think of losing the muscles in your arms and legs, that’s one thing, but this was a whole other take on it. That story was very powerful.”
The ALS advocates requested the congressmen budget $10 million for ALS research in the Department of Defense. Orte said veterans are 50 percent more likely than the general public to develop ALS, but the cause of that relationship is unknown.
“There must be an environmental link that is triggering the gene,” Orte said.
The advocates also asked for $10 million to continue the national registry of ALS patients through the Centers for Disease Control. Orte said this registry will gather data about ALS patients to find what they have in common in order to understand what prompts their development of ALS.
Orte said she plans to continue her ALS advocacy by raising money for the annual ALS walk this fall in Des Moines.