Parkinson’s patients take plea to lawmakers

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Copyright © 2018 Albuquerque Journal

SANTA FE – When Jamie Koch learned he had Parkinson’s disease, his doctor warned him it might take nine months to secure an appointment with a specialist.

About 9,000 New Mexicans are living with Parkinson’s, according to the New Mexico Parkinson’s Coalition, but only three specialists in movement disorders are available in the state. It’s a shortage the Legislature may try to address by asking the University of New Mexico Board of Regents to develop a plan to help.

Koch, a former state representative and longtime UNM regent, was among dozens of supporters who crowded into a small committee room at the Roundhouse on Wednesday morning to share their stories about living with Parkinson’s disease or seeking care for loved ones.

Koch choked up at one point as he explained the need for a Movement Disorders Center, as requested by a memorial before the House Health and Human Services Committee.

“I was very upset,” he said of learning about the shortage of specialists.

House Memorial 8 supports the creation of a Movement Disorders Center, asks the UNM Board of Regents to develop a plan for establishing a center and requests that it report back by Nov. 1.

Santa Fe resident Karen St. Clair, whose husband has Parkinson’s, called it “a disease of losses.”

“You lose the ability to move, to write, to play instruments, to play sports, to drive a car, to speak easily, to think quickly and eventually the ability to swallow or even smile,” she said.

The memorial, which is not binding, cleared the committee Wednesday and now heads to the House floor.

Rep. Deborah Armstrong, an Albuquerque Democrat and sponsor of the measure, said an expression of legislative support should help the university as it seeks funding.

She said that she often encountered Parkinson’s patients during her work as a physical therapist, and that it’s a difficult disease to diagnose. But treatment is important, she said, because the disease can lead to falls causing serious injury or death.

“We think this would be an ideal type of service and speciality to develop at UNM,” Armstrong said.

Parkinson’s is a neurological disease that makes it difficult for people to control and coordinate their movements. Symptoms can include tremors and shaking, anxiety and depression, vision problems and slurred speech.

There’s no cure, but therapy and medicine can help.

The shortage of specialists, however, is a barrier in New Mexico, supporters of the memorial said. One woman said her husband had to go to Phoenix for treatment on one debilitating condition, after doctors in New Mexico dismissed it as a normal symptom of Parkinson’s.

Others said the wait for diagnosis and treatment is particularly harmful because the symptoms can change, worsen or multiply – and the medications have terrible side effects.

“Not being able to be seen by a physician as frequently as you’d like leaves one feeling quite helpless,” said Yara Pitchford, a Parkinson’s patient who asked lawmakers to support the memorial.

St. Clair said the condition of her husband, Rob Barteletti, has worsened since they moved to Santa Fe from Portland, Oregon. Barteletti said he loves his neurologist, but there’s simply isn’t enough staffing for Parkinson’s patients.

Only three neurologists in New Mexico have special “fellowship training in movement disorders,” according to Armstrong’s memorial. One of those specialists is largely dedicated to serving patients through the U.S. Veterans Health Administration, and the other two have limited availability for new patients, the Parkinson’s Coalition said.

No one offered any estimates of how much it might cost to build or operate a Movement Disorders Center, though legislative analysts noted that some funding might be recouped for services billed to Medicaid, Medicare and private insurers.

Rep. James Townsend, R-Artesia, questioned why the university needed the memorial.

“I don’t think they had to be enticed for a heart clinic or a cancer clinic,” Townsend said.

Armstrong said the Legislature’s approval “may be helpful in their efforts to move forward.” She also said UNM was targeted because movement disorder centers are often located at teaching hospitals, similar to University of New Mexico Hospital.

The interim chairman of the neurology department at UNM’s School of Medicine spoke in favor of the memorial.

Dr. Christopher Calder said a movement disorders center could help recruit doctors and better serve patients.

“I think the shortage of not only movement disorder neurologists but neurologists in general – not only in New Mexico but in the nation – should be appreciated by the committee,” he said.

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