The UCSD Parkinson’s Support Group Network in Chula Vista had their first anniversary June 11 at the Norman Park Senior Center on F street.
The group first met in June 2018.
For their anniversary celebration the attendees were entertained by the musical group, Tremble Clefs, a therapeutic singing group for people living with Parkinson’s.
Tremble Clefs is a nationwide program for people with Parkinson’s and their caregivers.
Members of the group include those with Parkinson’s disease, their caregivers, family members, and supporters. The meetings are typically the second Tuesday of the month and the support group holds the meetings in Spanish and English.
“My husband, Jorge, was diagnosed three years ago at Scripps-La Jolla,” said Chula Vista resident Yolanda Soto on her husband’s Parkinson’s diagnosis. Soto works in real estate and is also his primary caregiver.
Jorge Soto first noticed difficulties with movement doing a routine task.
“He started with difficulty putting on shoes,” she said. “He asked ‘Why am I having difficulty putting on my shoe?’”
Jorge Soto was diagnosed after a visit to his doctor and a neurologist.
“We were in a state of shock,” she said. “We started taking steps. He takes a medication levodopa/ carbidopa. It helps calm down the symptoms.” After that they started attending
Parkinson’s seminars, the first one they attended was in Mission Valley.
“We had to accept the fact that Parkinson’s had arrived in our family,” said Soto.
“I’m a volunteer at UCSD,” said coordinator for the UCSD Parkinson’s Disease Support Group Network David R. Higgins. Higgins also has Parkinson’s disease. He is a retired scientist. He was also an adjunct associate professor at SDSU and an instructor at San Diego City College in the biotechnology technician training program.
For Higgins Parkinson’s disease is a family legacy, spanning four generations of his family.
“Yolanda and Jorge (Soto) provided critical inspiration for getting the group in Chula Vista started and keeping it going,” said Higgins. “It is by far the fastest growing PD support group in our network and all of that is done by word of mouth by folks like Yolanda and Jorge.”
“PD prevalence estimates in San Diego county are 16,000 and in Chula Vista – 1,600,” he said. “The incidence of PD is increasing, for unknown reasons.”
“One popular hypothesis is that developing PD requires two steps–a genetic predisposition plus some environmental insult such as exposure to herbicides,” said Higgins.
“The bottom line is we don’t know the causes of PD,” said Higgins. “About 10% of the cases can be attributed to genetic causes. PD is more common among agriculture workers (California’s Central Valley).
“Agent Orange was used as a defoliant in the Vietnam war and PD is now showing up in larger numbers among Vietnam vets exposed to Agent Orange,” he said. “Paraquat was used by the US government as an herbicide to spray on marijuana fields to kill the illegal crops.”
“Isradipine, a drug approved for the use of lowering blood pressure, showed some hints that it might be useful to treat PD,” said Higgins. But Higgins cited an article published by Medscape, written by Pauline Anderson on May 2, 2019, titled “Blood Pressure Drug Disappoints in Slowing Parkinson’s,” that indicates it might not be useful.
According to Higgins funding for research measures $36 billion from the National Institutes of Health, $700 million from the private Michael J. Fox Foundation, and $120 million from the U.S. a of Defense.
Soto credited Higgins with providing speakers on the subject, new information on the treatment of the disease, and facilitating discussion for building attendance at the group.
“I go regularly,” said Chula Vista resident Earl Jentz, 76.
Jentz was diagnosed with Parkinson’s in 2013.
“Only a person who has Parkinson’s can understand what it’s like,” said Jantz about the group.
“I was going to a physical therapist. She noticed my tremors and told me to see a doctor about them,”
“The meetings are the second Tuesday of every month, at the Norman Senior Center, from 1-3 p.m.,” said Soto. “The group grew from eight people to eighty. All are welcome.”
Call Tremble Clefs at (619) 363-0814 to join the group or for more information.
