Hollenbaugh has undergone a battery of treatments, including plasmapheresis, a procedure that separates blood cells from plasma to remove unwanted toxins and metabolic substances from the blood. The plasma is exchanged with other human blood and then retransfused back into the body. He also had between three and four inches of his spinal cord shaved off and replaced with a titanium capsule that feeds liquid medication to his body from a pump surgically implanted in his lower abdomen.
All of these measures are meant to treat and maintain his symptoms. There is no known cure other then stem cell transplant or early treatment with IVIg.
Late last year, Hollenbaugh lost complete use of his legs. He needs a customized motorized wheelchair to fit his six-foot-four-inch frame because he does not have enough upper body strength or coordination to move a manual wheelchair.
He wears an eyepatch to eliminate the double vision that onset last Christmas and his speech has become slow and slurred.
"Some days it's really hard to understand me and other days it's okay," he said. "It frustrates me. People treat me like I'm stupid because I sound like this, but I'm not."
Because neither Medicare nor Medicaid will cover the costs of a disability van, he and his aunt have improvised with an elaborate homemade pulley system to get him in and out of her pick-up truck. But after the 10 minutes it takes just to get him seated, Hollenbaugh is left exhausted and out of breath.
Last week, Guaranty Bank set up a donation fund account for a van.
"A new van costs $40,000. All I need is something used," Hollenbaugh said.
No matter how bleak life may seem at times for Hollenbaugh, his spirit lifts when he talks about his two-year-old black chow Shadow.
"He's my baby," Hollenbaugh said. "When I'm sleeping, if my hand falls off the bed, Shadow licks it until I pick it back up. He's very protective."
Hollenbaugh JAH
What is Stiff-Person Syndrome?
Stiff-person syndrome is a rare progressive neurological disorder characterized by constant painful contractions and spasms of voluntary muscles, particularly the muscles of the back and upper legs. Symptoms may occur gradually, spreading from the back and legs to involve the arms and neck. Symptoms may worsen when the affected individual is anxious or exposed to sudden motion or noise. Affected muscles may become twisted and contracted, resulting in bone fractures in the most severe cases. Individuals with stiff-person syndrome may have difficulty making sudden movements and may have a stiff-legged, unsteady gait. Sleep usually suppresses frequency of contractions. Stiffness may increase and patients may develop a hunched posture (kyphosis) or a swayback (lordosis). Researchers theorize that stiff-person syndrome may be an autoimmune disorder. Other autoimmune disorders such as diabetes, pernicious anemia (a chronic, progressive blood disorder), and thyroiditis (inflammation of the thyroid gland) may occur more frequently in patients with stiff-person syndrome. Is there any treatment?
The drug diazepam, which relaxes the muscles, provides improvement in most cases. Baclofen, phenytoin, clonidine, or tizanidine may provide additional benefit. In some patients, immunomodulatory treatments such as intravenous immunoglobulin may be beneficial. Physical and rehabilitation therapy may also be needed. What is the prognosis? There is no cure for stiff-person syndrome. The long-term prognosis for individuals with stiff-person syndrome is uncertain. Management of the disorder with drug therapy may provide significant improvements and relief of symptoms. What research is being done?
Research on stiff-person syndrome is aimed at enhancing scientific understanding of the disorder and evaluating new therapeutic interventions RETURN TO PAGE 1 |
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