Richard Fiske Bailey tries hard not to let Parkinson's disease slow him down. He has a license to drive motorcycles. He bikes. He walks without a cane or walker.
But there are moments when the disorder affects him, said Bailey, 59. Sometimes he drags his right foot and has a pinkie finger that sticks up without his volition.
"I'm not homebound by any means," he said. "Sometimes I appear completely normal, and other times something is clearly wrong."
Bailey, an independent business consultant, has taken another step in fighting the disease: He makes himself a subject for research that he hopes will lead to better understanding and more effective treatment of Parkinson's disease. An estimated 7 million to 10 million people suffer from Parkinson's disease, the signs of which include tremors, an inability to move or a slowness of movement, or impaired balance or coordination.
"When you have something like this, you're literally losing control of your movements. Participating in studies gives you back some control," he said. "I participate in studies for two reasons: They might find something that would help me personally, and because I am part of a community."
Bailey participated in a recent study by Dr. Kathleen Shannon, his physician at Rush University Medical Center, that found a protein linked to the disorder can be found in the body well before the onset of Parkinson's disease symptoms.
Although scientists know that the alpha-synuclein protein is found in the brains of those with Parkinson's disease, the study "is the first time that anyone has demonstrated that an alpha-synuclein protein is in any tissue in a living person before they develop the symptoms of Parkinson's disease," Shannon said. "We also wanted to see if we could detect the protein in the nerve cells in the wall of the intestines. It's exciting. If we can show that protein accumulation is reliable, then we can diagnose Parkinson's disease much earlier."
The study was published in the May 15 issue of the journal Movement Disorders.
Shannon and her fellow researchers used a less invasive method of checking the colon for the presence of the alpha-synuclein protein. While the flexible sigmoidoscopy procedure is similar to a colonoscopy, the patient does not have to go under anesthesia because the scope is inserted only about eight inches into the colon. And while a colonoscopy is generally done only once each decade, a flexible sigmoidoscopy can be done at any point and takes minutes to carry out.
The researchers also discovered that Parkinson's patients had "leaky guts" that led them to be exposed to a particular toxin linked to the disease.
"We found evidence that patients with Parkinson's disease are exposed to a particular toxin, and we found evidence that people without Parkinson's disease were not exposed to it. We also found evidence that patients with Parkinson's also have 'leaky guts.' No one in the control group (of healthy patients) had leaky guts," Shannon said. "The gut is a barrier to things. A leaky gut lets more things in."
Shannon's study examined 10 people in the early stages of Parkinson's disease, with a median age of 59 years and a median disease duration of 11/2 years since they first showed signs of the disorder.
Dr. Tao Xie, an assistant professor of neurology and a movement disorders specialist at the University of Chicago Medicine, called the paper "very interesting, particularly the presence of alpha-synuclein in the colonic tissue of the patients two to five years before the development of Parkinsonian symptoms, which suggests the possibility of using easily accessible colonic tissue for the early diagnosis of the Parkinson's disease."
"It would have a significant impact on research and possible early intervention in the future when new medications slowing down the progression of the disease become available, if their results could be replicated in large-scale Parkinson's disease patients with age-matched controls," Xie said.Copyright © 2015, The Baltimore Sun