by Robert Jump

His father was wheelchair bound for more than 20 years and while ataxia, a form of cerebral palsy, was not his official cause of death, it will most likely be his son’s.

“I’ve known that something was wrong since I was about 35, I mean I had symptoms, you know.”

The words, terribly slurred and difficult to understand, alternately tumble or are slowly forced from his mouth. Standing, feet wide apart, the body sways and looks as though it might topple over any second. No longer able to walk without a cane, he admits falling frequently.

“I used to be a contractor and the first thing I noticed was I started losing my balance when I would go up a ladder,” 49-year-old Vincent Loya told Coquille-Today.Com. “I ignored it for a while, but pretty soon I couldn’t just do it anymore you know. I’d go up the ladder a couple of steps and I’d get dizzy. A carpenter that can’t go up a ladder isn’t much good.”

But dizziness and balance weren’t the only issues.

“My hands started doing this,” he said extending both arms to display hands so rocked by tremors they are unable to grasp or hold on to many things. “I couldn’t run my saw or a nail gun. I could no longer do the job that I was trained to do.”

Loya moved to Coquille shortly after his body failed him four years ago. The disease progressed slowly for a time. And from most outward appearances, one wouldn’t have known there was a problem. But during the last year or two, the disease has progressed rapidly.

“I think my dad lost his driver’s license when he was about 47,” Loya said. “From that time on he always had to use a walker and then later on an electric wheelchair.”

Having seen his father first wither and die from the disease, Loya had a good idea what was taking place early on. He received official word four years ago, after DNA testing, when he was diagnosed with hereditary ataxia.

“That’s when I found out legally,” Loya said with a chuckle.

“I have it, my dad had it, and my daughter has it,” he said, all laughing aside.

In addition to slurred speech and loss of balance, Loya’s condition is further damaging his brain. His arms jerk, tremors rock his hands and involuntary eye movements cause vertigo and keep him in a near constant state of nausea. Two years ago he tipped the scales at nearly 220 pounds, now he weighs just 165 pounds.

“I get up every morning and I puke,” he said. “My hands don’t hardly work anymore. Like opening a package or cutting a piece of meat, I can hardly do it anymore. Washing dishes is really hard. I’m always cutting myself and cooking is a lot harder than I thought it would be.”

Even his hearing has been affected and Loya can no longer hear his cellphone ring.

“It never gets any better; it always gets a little bit worse as time goes on.”

With all of what hereditary ataxia has brought Loya he remains upbeat until the topic of help is broached.

“I’ve been trying to get disability for about five years, it’s ridiculous,” he exclaims. “There are drug addicts and alcoholics right here getting it who never worked for a living a day in their lives that are getting disability.”

It’s a real sore point for Loya.

“This isn’t something I did to myself. I was born with this and there are guys right here who are getting help that drank themselves into it and never worked,” he said. “I worked until I couldn’t work anymore and paid into the system.”

Loya was under the impression that government programs such as the Oregon Health Plan and Social Security were there to help, but that hasn’t been his experience.

“I had a heart problem separate from the ataxia and I received SSI (Supplemental Security Income) for one year,” Loya said. “During that one year they subtracted $200 each month from the $500 in SSI I was receiving because I got food stamps at that time.”

In 2007 Loya began trying to get some help in earnest and since then has applied multiple times to both the Oregon Health Plan and to Social Security, but it’s been to no avail. In addition, he has tried Senior and Disabled Services, Department of Human Services.

“Its just more paperwork and more paperwork, I get turned down every time,” Loya said.

Loya spends much of his time these days home alone. His partner for the past fifteen years, Celia Pellegrini, works as a bartender in a local tavern and she’s quick to point out that times have been better.

“Life was like cake before,” she said. “When he was able to work he was making $45 an hour and I was making big money in tips too. I owned my own house.”

That was Pismo Beach, Calif. Now the couple struggles to makes ends meet paying $700 in month in rent.

“I used to watch him go out and split two cords of wood a week by hand,” she said. “They used to drop the logs off and he’d drag them up by hand and then cut them into disks and then split them by hand. I used to stack it.”

It’s a matter of paperwork, Pelligrini said.

“All of these agencies want a doctor to sign a statement with his diagnosis and prognosis,” she said. “I can’t get him in to see a doctor without insurance and the insurance companies don’t want him because it’s a preexisting condition.”

“Most of the doctors have never even heard of the disease I’ve got,” Loya adds. “Disability sent me to their doctor who was supposed to be a neurologist and he had never heard of the disease. How can he give his opinion to them about my disease that he’s never heard of?”

The couple says DNA testing results have been submitted to the agencies involved and an attorney has been hired after receiving yet another denial in November.

“I don’t know what to do anymore,” Loya said.