CHEWELAH, WA. David Michaelis felt the symptoms of a rare neuromuscular disease in October of '02.The condition causes involuntary movements of the head and neck, which destroys the ability to coordinate eye-hand movements.
Patients find that the best thing to do is lie down several times during the day to ease the pain and fatigue, and sometimes, the involuntary twisting. The treatments cost between $1200 and $1800,and must be repeated every 3 months.
Because the condition affects only 3 people out of 10,000, doctors are slow to recognize the symptoms as those belonging to the disorder - spasmodic torticollis (ST). So, Mr. Michaelis shuffled from doctor to doctor, and evaluation after evaluation until one of them identified it correctly 9 months after the onset of symptoms.
But it took only 5 months after onset for the pain, fatigue, and involuntary movements to bring the 44 year old to the inescapable conclusion that he could not work at his job as a cabinet maker. He left his job for good on March 10th, '03.
Three months later, he filed for Social Security disability benefits. His first denial came quickly- only one month later. He appealed and was denied again on October 24th.Anotherappeal was filed on November 12th, asking that his case be heard by an Administrative Law Judge.
In the meantime, he and his wife were living off of credit cards. His wife worked part time at a consignment store part time.
At this point, the previous efficiency of Social Security review and evaluation ended. Month after month went by with the only communication from SSA being a letter reporting that the hearing office had received his file. Calls by his representative to the hearing office yielded little clue about how soon his case would be scheduled to be heard.
A year went by without anyone at the hearing office revealing when a hearing would take place. Mr. Michaelis was at the end of his financial rope, at risk of losing his home.
In the meantime, on January 7th '05,his representative asked the hearing office to classify his case as critical based on impending bankruptcy, hoping to speed up the process.