There is something about a conversation between two brilliant men of science in the intimate space of Kepler’s Books in Menlo Park that feels like a private conversation you might only imagine if you could have a one-on-one with two leading experts.
Such was the personal conversation between the Nieman Fellow and professor emeritus of journalism, science journalist Jon Palfreman and Dr. William Langston as they chatted about Parkinson’s disease. Dr. J. William Langston is the founder, CEO, and Scientific Director of the Parkinson’s Institute.
“You’d think I’d have behaved in a sophisticated manner,” Palfreman quipped as he described his reaction of disbelief and denial when he was diagnosed with Parkinson’s disease. He routinely tried to hide the disease except that “I told clinicians up front that I had PD, because I knew they were familiar with all of the signs of PD and I could never fool them,” he joked. Eventually, he “came away with a destiny. I could use my insights as a patient.” He met two people who inspired him with their determinism: Pamela Quinn, a movement consultant for people with PD, and Tom Issacs, a surveyor with PD who walked 4,500 miles to raise money for Parkinson’s disease. “The patient in me needs hope.”
Dr. Langston announced that, “after lots of false leads, he feels that the Parkinson’s community is at a threshold never seen before. “I think we’ve got the corners [of the puzzle of PD] now, and that within five years we should know something.”
Langston praised Palfreman’s book Brain Storms and joked that it is wonderful to have the journalist [Palfreman] on our side now,” referring to Palfreman’s diagnosis of Parkinson’s. Langston described how Palfreman, now with a personal vested interest in PD, interviewed the top 30-40 doctors for his book of “brilliant science” and speculated that Brain Storms is the best book ever written on Parkinson’s disease.
Langston described the three latest disease-modifying therapies which include Rytarie, an extended release capsule with little capsules of carbidopa levodopa inside that offers a smooth response with less side effects. An Inhaled levadopa that has been developed to treat OFF episodes, and a belt-worn pump that shoots medication continuously under the skin, straight into the blood stream.
Both speakers praised exercise, with Langston quoting the familiar saying that “a mile a day keeps the doc away” and that exercise helps improve gait and balance.
Alpha Synuclein, a protein that is abundant in the human brain was discussed as possibly playing a role in the disease. It is of great interest to Parkinson’s researchers because it is a major constituent of Lewy bodies, protein clumps that are the pathological hallmark of Parkinson’s disease. Researchers are trying to find a way to break down the proteins which become misfolded. The reason that the Parkinson’s develops, Langston speculates is probably a combination of reasons. “Genetics loads the gun and environment pulls the trigger.”
“The easiest thing with PD is to give up. You have good days and bad days,” said Palfreman, “but you have to keep at it.”
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