By: Paula Spahn

Published on the website of the NORTHWEST PARKINSON'S FOUNDATION

It was supposed to be short. In 2006, Roger Anderson had surgery to relieve pain from a compressed disc in his spine. His wife, Karen, thought the hospital staff in Portland, Oregon, would understand how to handle a Parkinson's patient.

It can be difficult. Parkinson's patients like Mr. Anderson, for example, must take their medication at precise intervals to replace the missing brain chemical dopamine. "You don't really have a window of time," says Mrs. Anderson. "If you have to wait an hour, you have a huge problem." Without the drug treatment, the people can "freeze" and be unable to move, or develop uncontrolled movements called dyskinesias, and may also fall.

But the nurses at the Portland hospital didn't internalize it. "We had to wait half an hour to an hour, and that's not how it works with Parkinson's patients," says Mrs. Anderson. In addition, the hospital's procedures at the time prohibited Mrs. Anderson from taking Cinimate pills herself.

The surgery and the anesthesia, the interruptions in the administration of the medication, an incision that eventually became infected - all together caused a hospitalization of almost 3 months. Mr. Anderson developed hallucinations, went back and forth between hospitals and rehabilitation facilities, fell and lost 30 pounds. "People would tell me he wouldn't come home," says Mrs. Anderson.

But he recovered, and at the age of 69 he feels well, says his wife, despite the progress of the disease. But this is a normal story, say neurologists.

Every elderly person is exposed to dangers in hospitals, but for Parkinson's disease patients - most of whom are elderly people - hospitals are especially dangerous. "Patients told us horror stories," says Dr. Michael Okon, a neurologist at the University of Florida and medical director of the National Parkinson's Association. "Even in good hospitals, even in the hospital where I work." Parkinson's patients are hospitalized more frequently than their peers who do not have Parkinson's disease. They are also hospitalized for a longer time. A common reason for this: "These patients do not receive medication on time and it is also not appropriate," says Dr. Okon. Some patients have to take the dopamine replacement drugs as frequently as every two hours, a form of drug treatment that is not found in the routine procedures of the hospital.

Worse, common drugs - including COMPAZINE and PHENERGAN for nausea and REGAKAN, which can be given to stimulate bowel activity after surgery - actually block dopamine and cause Parkinson's syndromes. So they are at risk for falls and fractures as well as aspiration pneumonia. In addition, any infection can cause hallucinations because Parkinson's patients have low reserves of learning and memory. But the drug HALDOL, which hospitals use a lot against confusion, also blocks dopamine. "HALDOL is the worst drug that can be given to Parkinson's patients" says Dr. Okun. "All in all, it can cause a real mess."

With proper treatment, most Parkinson's patients can live good and long lives. "But when you stress them with a fall or infection or anesthesia they can break down," he says, turning a short hospitalization into weeks of illness. Not everyone is as lucky as Roger Anderson.

What will help in the long term is educating the hospital staff about Parkinson's disease and changing the way they function. And yet - isn't it sad? - "Change is slow in the health system and in the meantime many people are injured" says Dr. Okon.

As unjust as it may seem, the responsibility for proper care lies with Parkinson's patients and their families. The foundation has found a kit on awareness that is distributed for free. The kit includes an identification bracelet to identify a Parkinson's patient, information sheets and reminder stickers for doctors and nurses "We want to arm the people," says Dr. Okun. The Andersons used the extension in subsequent hospitalizations and found it effective. And Mrs. Anderson reports that now years after the 3 month nightmare the hospitals are encouraging her to bring her husband's medications with her and give them to him on his schedule.

You could say that the hospital is letting her do what he had to do, but that's fine on her part. It's better than the alternative

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