Ohio Woman Copes with Early-Onset Parkinson’s Disease 2018-02-16T03:01:39+00:00

SSDI & Parkinson’s Disease: A Personal Story

Claiming Social Security Disability Insurance (SSDI) benefits can be a difficult and complex process. This is the story of one person’s journey to approval, with True Help providing expert assistance along the way.

Nurse fights for disability after being attacked by “occupational hazard.”

Columbus, Ohio – “It wasn’t like I was old or had a heavy-lifting job,” said Ruth Johnson, 49, as the married mother of four looked back at her career as a service coordinator for a Columbus medical equipment company. Yet, there she was, in her mid-20s in 1985 feeling the twinges of back problems, the first of what turned out to be many maladies to come.

More than two decades later she can look back and smile, not because she had happy times but because, “I deal with problems with a lot of laughter,” she said. “They say laughter is the best medicine, and I think that’s true.”

However, no amount of laughter would cure ever-more-severe back problems that led to two surgeries for spinal stenosis and herniated discs, the most recent of which was performed only months ago. Fibromyalgia has taken its toll on her for almost that long. Then early-onset Parkinson’s disease struck in the late 1990s. Somewhere along the way she also developed osteoarthritis.

Yet, she and her husband, Byron, persevered as best they could. “We had two sets of kids,” she said. “The older ones were born when we were younger and healthier, and the two younger ones were born in the midst of my health problems, 10 years later.”

She worked full time until the youngest daughter was born in 1990. Then she quit partly because of her health, partly to care for her younger children. “I was in denial about my health I think and that was a good excuse,” she said. “A few years later, I went back to work part-time and also home schooled the two younger girls from 1995 to 2005.”

Try as she might, Mrs. Johnson finally had to admit, laughter aside, she was no Superwoman. She needed medical treatment, rest away from the job and, ultimately, Social Security Disability Insurance (SSDI) benefits. Each step in its own way would add to her discomfort.

She did not know it at the time, but in her mid-20s, Mrs. Johnson’s body was growing old. She was years younger than the typical spinal stenosis patient. The lumbar spine or lower back provides a foundation to carry the weight of the upper body. It also houses the nerves that control the lower body. With aging, degenerative changes in the spine can occur. The disks between the vertebrae might become dehydrated, and the joints might become overgrown due to arthritis. Over time, these changes also can lead to narrowing, or stenosis, of the spinal canal.

Although not usually involving manual labor, her service coordinator job sometimes called for her to “put her back into it.”

“Occasionally we had to bring out oxygen tanks,” she said. “I was told, ‘They’re not too heavy. You can lift those.'”

After her last child was born in May 1990, Mrs. Johnson became “fatigued and tired all the time. My doctor told me I probably had fibromyalgia, but he didn’t prescribe any treatment.

“The primary symptoms of fibromyalgia include widespread musculoskeletal pain, severe fatigue, and disturbed sleep. Fibromyalgia means pain in the muscles, ligaments and tendons-the soft fibrous tissues in the body. Only recently has fibromyalgia gained medical prominence, recognized as something more than “It’s all in your head.”

“I wasn’t diagnosed for real with fibromyalgia until a couple years ago,”

Mrs. Johnson said.By 1999, she recalled, “I started having problems on my left side, and I didn’t know what caused them. My foot felt like I was dragging it. I couldn’t hold up my left arm. I was told I had carpal tunnel, a brain tumor and other things. In 2004, I was diagnosed with early-onset Parkinson’s disease, and I started to take that medication.”

Once more, Mrs. Johnson’s body had advanced beyond her years. Parkinson’s disease has traditionally been thought of as a disease of old age. It usually affects people in their 50s and 60s or even older, but some reports indicate that 10 percent to 15 percent of all Parkinson’s patients have symptoms before the age of 50.

Add to that her diagnosis of osteoarthritis, a type of arthritis caused by the breakdown and eventual loss of the cartilage of one or more joints, and Mrs. Johnson knew the time had come for her to apply for disability-if only the government actually believed she was sick enough to qualify.

That proved to be a tough sell. She applied on her own for SSDI in 2004 and was denied coverage. Surprised but determined, she went to the Internet to research SSDI and came upon the site for Allsup, the nation’s leading SSDI representation company. CEO and founder Jim Allsup started his company in 1984, after working for the Social Security Administration, to help people—just like Ruth Johnson—receive their entitled SSDI benefits.

A nationwide company with headquarters in Belleville, Ill., near St. Louis, Allsup’s success rate is a staggering 97 percent. The company is so highly regarded that, in October 2006, the Better Business Bureau presented Allsup its Torch Award for excellence in customer service. Since 1984, the disability advocacy company has helped more than 100,000 people nationwide obtain more than $1.5 billion in Social Security Disability Insurance (SSDI) and Medicare benefits.

The wait time just to process a case can be daunting. At the Columbus office, a claimant in February 2008 will wait an average of 724 days for a favorable or unfavorable initial decision. Across the nation, the waiting lines are getting even longer.

A key reason for this growth is the shrinking Social Security Administration (SSA) field staff, largely due to retirement. SSA was 30 percent smaller in 2002 than 20 years before. From August 2005 to January 2007, about 2,000 field office employees left SSA without being replaced. Meanwhile, since 1990, the number of disabled workers drawing SSDI benefits has more than doubled, from 3 million to 7.1 million, as the aging baby boom generation begins to put far greater demands on the agency’s resources.

About 1.4 million disability claimants wait for their cases to be resolved. The benefit provides individuals who have severe physical and mental disabilities with living expenses when they are no longer able to work. Some wait more than two years for decisions in their cases.

In a report released Jan. 7, 2008, about the SSA’s disability backlog, the Government Accountability Office said rising numbers of disability claims, staff losses and turnovers, and management weaknesses have contributed to the backlog and longer waits by claimants for resolution. An overall loss of experienced staff combined with increasing workloads and resource constraints can reduce the success of any initiative aimed at reducing backlogs, the report stated.

“The disability backlog challenge is so immense that it will take an all-hands-on-deck approach to resolve,” Mr. Allsup said. “Government and industry must work together to meet the demands of the disabled today and in the future. We see the impact of the problem every day as we work with tens of thousands of disabled individuals and their families.

The SSA received an increase in appropriations in December 2007 to hire more administrative law judges this year to reduce the backlog.

“There is no question the Social Security Administration needs more resources to meet this challenge,” Mr. Allsup said. “Companies like Allsup contribute by providing solutions in the marketplace, helping disabled Americans navigate-and reduce the time spent in-the SSDI process. It is important that citizens with disabilities know they have options available to assist them in their time of need.”

Ruth Johnson had reached her own time of need and contacted Allsup in November 2005. The company sent her an Ohio Social Security Disability Insurance (SSDI) questionnaire to complete, and a representative followed up with her to add detail to her responses. Allsup, whose motto is “You stay home while we do the work”-then gathered Mrs. Johnson’s medical records to compile a thorough submission for the SSA’s Columbus office.

Even with Allsup’s veteran, professional help, Mrs. Johnson’s application was denied-not once but twice more. Discouraged, she refused to quit, helped in large part by Allsup representatives who kept her informed every step of the way.

“They kept encouraging me,” she said. “They told me not to give up. They said everyone gets turned down, sometimes multiple times. My husband told me to hang in there because the Allsup folks are professionals, and they know what they’re doing.”

The next step in the SSDI approval process is a hearing before an administrative law judge. For that, Allsup consultant Elizabeth Minton prepared the court record for presentation. If Mrs. Johnson had to attend, an Allsup representative would be by her side. Many times, however, the judge will review the submission and render a decision based on the record. This, in fact, is what occurred in Mrs. Johnson’s case.

In August 2007, she received the good news and a letter explaining the judge’s decision. “I had to look at the letter several times,” she said. “At first I thought it was a mistake, and then it hit me that I’d been approved.”

The judge agreed that Mrs. Johnson was disabled, declaring that her disability onset and retroactive payment dates were the same: Aug. 27, 2005. Not only was she entitled to SSDI payments for herself but also for her two daughters to cover the time between the disability payment date and when each of them turned 18.

Betrayed by her body and finally compensated by the government, Mrs. Johnson “was overjoyed. It was tough having a mortgage and two kids and not having income to support them. It’s such a relief to know I don’t have to feel guilty about not having to work and earn income for the family. It’s a blessing, really.”

“Without God and prayer,” she added, “my husband and I would not have made it through this trying time. After my relationship with God, my husband is the most important person in my life.”

That added support might come in handy because, as Mrs. Johnson knows, having the SSDI funds will not cure her ills. In July 2004 and February 2008 she underwent two back surgeries that inserted rods and bolts to stabilize her lower spine. She also wears a 30-day event monitor that keeps track of her heart.

“Since 1999, I’ve been having irregular heart beats off and on that have been getting worse in the last two years,” she said. “My cardiologist is trying to decide if he can cure it with an ablation.”

Through all that, the persistent patient, who still believes in medicinal laughter, presses on.

“I enjoy crafts and going to the YMCA to swim, which helps with the Parkinson’s and fibromyalgia,” she said. Now that their youngest daughter is graduated from high school, Mrs. Johnson and her husband are getting accustomed to being empty nesters. “It’s good that I can slow down and enjoy life,” she said. “It’s not flying by the way it used to.”

“Thanks to Allsup,” she added, “our life is good.”

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