System Disabled | News | Pittsburgh | Pittsburgh City Paper

System Disabled

Young workers who contract Parkinson's disease face special challenges.

Frank Ferraro remembers his pinky tingling in 2000, a sensation he shrugged off at the time, calling it a "pinched nerve."

But by 2003, during a test in front of his neurologist, Ferraro couldn't even sign his name. The failed exam revealed much more than a pinched nerve.

Today, Ferraro's left hand trembles uncontrollably, while his right barely moves at all. The muscles in his face are cemented in a stoic expression, and his erratic gait does just well enough to keep him from falling flat on his face.

At age 46, Ferraro has Parkinson's disease, an unrelenting degenerative motor-system disorder, the cause of which, and cure, remains a mystery.

And now, three years after being diagnosed with Parkinson's -- a disease he says he plays "tug of war" with -- Ferraro is playing the same game against Social Security, with an expected outcome just as gloomy.

Parkinson's disease usually begins between the ages of 50 and 65. It affects about 1.5 million people nationwide, and between 8,000 and 10,000 people in Western Pennsylvania, according to Kevin Brown, executive director of the Parkinson Chapter of Greater Pittsburgh.

Ferraro, of Edgewood, suffers from young-onset Parkinson's, a designation given to sufferers younger than 50, which represents less than 15 percent of people with Parkinson's in the U.S. Actor Michael J. Fox was diagnosed with young-onset Parkinson's in 1991 at age 30.

Common symptoms of Parkinson's include muscle stiffness, tremors in the arms and legs, difficulty walking and fatigue.

Such symptoms have been mounting for Ferraro since 2000. The former newspaper printer, computer-aided drafter and self-employed artist tried his best to disguise them, and he waited as long as he could before he finally filed for Social Security in July 2007.

"The last thing I wanted to do was file for disability," he says softly, struggling to raise his voice, another symptom of Parkinson's. "But I had to because I couldn't function anymore. The disease made me stop.

"I've been told, 'You're too young to have Parkinson's,'" Ferraro adds.

That belief could explain why some Parkinson's sufferers in the region, who, after being forced to surrender their livelihoods during the prime of their professional careers, must fight Social Security to collect disability.

In fact, some are finding the government to be just as unforgiving as the disease.

According to David VonHofen, director of programs and outreach for Parkinson Chapter of Greater Pittsburgh, young-onset sufferers like Ferraro are hit hardest when denied disability.

Unlike older workers who file claims for disability benefits, "They're hitting their peak earning years," VonHofen says. "And all of the sudden their careers are taken away."

VonHofen says the major difference between young-onset sufferers and older people with Parkinson's has less to do with symptoms and more to do with the unusual nature of being diagnosed with the disease at such a young age.

Until he met with the young-onset Parkinson's group, a division of the Parkinson Chapter of Greater Pittsburgh, Ferraro had no idea how difficult his battle for disability benefits would be.

"I told [the young-onset support group] I was applying for disability, and they all kind of laughed and told me their horror stories," he says. "How it can take years and you can still be denied."

According to Mark Lassiter, of the Social Security Administration national press office, 75 percent of people with Parkinson's who applied for disability in 2006 were accepted on their first try, a surprising statistic to Ferraro and other young Parkinson's sufferers in the area who are struggling to receive Social Security.

Lassiter wrote in an e-mail to City Paper that he was not sure whether the SSA had statistics showing the acceptance rate for Parkinson's sufferers less than 50 year old. The SSA could not produce such specific statistics by CP's press time, and no representative would return phone calls or e-mails asking whether the acceptance rate for young-onset Parkinson's sufferers is generally lower than the overall rate.

Carolyn Woodberry, development associate for the National Parkinson Foundation, says the 75 percent acceptance rate makes sense for older Parkinson's patients, but "those young-onsets, that's a different situation." She says young-onset sufferers are less likely to have their disability applications accepted, because many people tend not to think that younger sufferers can have the disease.

Larry Kemp, a Parkinson's sufferer and attorney, understands the process of filing for disability, and he says the odds are against people diagnosed with young-onset Parkinson's.

"Young people, according to the [SSA] guidelines, should have a harder time getting disability," he says. If you're older, "There is less of a burden to prove that you need disability. Favoritism is built into the system."

Sandi Harr knows she isn't a favorite.

Harr, 52, of Philipsburg, was officially diagnosed with young-onset Parkinson's in February 2005. After her diagnosis, she kept a journal of all her symptoms, preparing for the inevitable disability application, which Harr filed in April 2006. She was denied five months later.

After applying, Harr says a disability examiner, the person in charge of accepting or denying applicant claims, never once met with her, something Harr found "very demeaning."

But Majewski says that the Social Security office gathers all the information needed to conduct a thorough review of each application without meeting with the applicant. Social Security examiners consult with the applicant's own doctors, who should be included in the paperwork, he says.

If the examiner still does not feel confident in accepting or denying the claim after discussing the applicant's condition with his/her doctors, the examiner may ask the applicant if it is OK for the Social Security office to conduct a consultative exam, where an internal doctor reviews the case and assists in making the decision.

Harr, however, got the impression that the Social Security office paid little attention to the specifics of her problem and how it affected her work.

"They don't want to know the details," she says. "They are looking at a standardized format for Social Security."

According to the Social Security Web site's Neurological Disability Evaluation, applicants suffering from Parkinson's can be accepted for disability if they have one or more of the following signs: significant rigidity; bradykinesia, an extreme slowness of movement; or tremors in two extremities.

"We look at their condition and its impact on their ability to function," Lassiter stated in an e-mail to City Paper. "We also look at the effect of any medications they are taking for controlling their symptoms."

But Harr isn't convinced that Social Security reviews applications so thoroughly.

"It's just a form they go by," she says. "It's not like you're a person, you're a process to them. It's frustrating because your life is in the hands of people who are strangers to you."

Although denied in her initial Social Security application, Harr, who worked as a home-care nurse for the University of Pittsburgh Medical Center, was fortunate enough to have short-term and long-term health disability benefits.

"It is a gift from God," she says. "We would have been in financial chaos if not for the long-term disability."

But knowing that her private insurance disability wouldn't last forever, Harr re-applied for Social Security in September 2006. And this time she got a lawyer.

On Aug. 16, 2007, Harr and her lawyer had a hearing before a Johnstown judge, where she says she answered "vague" questions about her Parkinson's. She left the hearing feeling "very deflated and dejected," expecting her application to be denied once again.

But much to Harr's surprise, it was approved on Aug. 27, 2006.

"I cried, partly out of relief and partly because the reality had set in that I was going to be on disability," says Harr, beginning to cry. "It's still really hard. There is a shame about it."

Private insurance companies, like Harr's, are obligated to cover workers who are unable to perform tasks required by their profession. Social Security is different.

Social Security can deny applicants disability if there is evidence that the applicant can perform any job, whether or not it pays as well, or is in their field of expertise. That is disappointing news to Thomas Forbes, who has worked as a carpenter for 30 years.

Forbes was diagnosed with Parkinson's in 2005. He filed for disability in May 2006, and was denied eight months later.

"They said I can't [do carpentry work] anymore, but I could probably do something else," he says.

Age, Kemp says, probably plays a large part in the SSA's decision-making process. "It's harder for someone who is older to re-train for another career, rather than someone who is younger."

Forbes, 53, of Zelienople, appealed the decision immediately after finding out he had been denied, but he was told by a representative of Social Security that it would take about a year and a half before he would finally stand before a judge.

"From what I've heard, it's fairly typical," he says. "This process takes a long time. I heard you always get turned down the first time."

According to Kemp, Forbes is right.

Kemp, 58, was diagnosed with early onset Parkinson's in 1994. He has represented about 20 clients after they were denied disability for a particular ailment or disease, none of whom had Parkinson's.

"The office denied any person they could as long as they weren't comatose," Kemp says. "As long as they were able to walk into the Social Security office, they were denied."

But, he says, upon appealing, "The judge usually always turns around the ruling."

Since the symptoms of Parkinson's can be subtle at times and escalate at others, Kemp says proving the need for disability can be difficult.

"It's harder to explain why you can't do what you used to be able to do," he says.

Forbes says quitting his job and being denied disability hasn't been a financial strain on his family. "My wife works, so we're all right economically," he says. "But if I were single, I'd be screwed."

Although Ferraro isn't single, he's feeling the financial stress from being unemployed by his Parkinson's at such a young age. Currently, he is relying on money from his mother to get by, as he awaits a decision from the Social Security office.

"I'm saddened by the fact that people have to go through such pain to get money that is rightfully theirs," says Ferraro, who expects to hear in November if his disability claim is accepted. "You have to fight the government. It's a battle I'm not looking forward to."

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