According to the Parkinson’s Dis¬ease Foundation, in 2005, “There were an estimated 4.1 million people worldwide with Parkinson’s disease. In 25 years, that number is predicted to climb to 8.7 million.” The number of people living longer has led to the projection that by 2030, “There may be 80 percent more Americans with the disease.” The organization adds that this information emphasizes the need for continued research.
In fact, as learned in Part 3 of this series, research and new approved treatments are already being used to protect against symptoms. Work to develop drug treatments, including gene therapy and stem cell therapy used to stall the disease’s progress, is now under way. Because PD is notoriously difficult to diagnose, a blood test and voice-based tests are also being worked on for earlier detection.
The impact of actor Michael J. Fox, a PD Early-Onset (20-50 years of age for detection) patient, has given “a face” to the research.
“Michael’s very public and generous support of research has greatly heightened hope that a cure will be found,” Sun City resident Alan Mogilner said.
Whether or not to be part of a clinical drug trial draws various responses.
“I’ve never been involved in a clinical trial, because I take too many medications for PD already,” Jo-Ann Golec, a Parkinson’s spokesperson, said. “We need people who are newly diagnosed to volunteer for clinical trials.”
“I’ve done five trials,” Mogilner said. “If your doctor recommends it, it would be better because he knows your condition.”
Video gaming researchers; Nathan Herz, a doctor of occupational therapy at Georgia Health Sciences University in Augusta; and Glenna Dowling, a professor and chair of the Department of Physiological Nursing at the University of California have had their spirits buoyed by their findings.
In brief, gaming has shown great improvements on dopamine production, endorphin increases (depression decreases), and improved gait and balance among participants.
Kae McQueen of Sun City has already discovered gaming’s benefits.
“I work on games [and] slot machines on the computer to stop my leg movements. It [also] keeps my brain active,” she said.
As a result of a fairly recent research discovery, Phil Kopczynski was chosen three years ago to be a candidate for Deep Brain Stimulation surgery in which electrodes are inserted into the brain for better brain functioning.
“The result [of the surgical procedure] is no more tremors, less medications, and generally feeling a thousand times better,” Kopczynski said. “I am able to play golf, fish, swim, walk the dog, and exercise.”
Golec is also chairman of the American Parkinson Disease Association’s Annual Education Symposium, which will take place this year on April 13 at The Meadows Club in Rolling Meadows, Ill.
The symposium includes a three-course meal and will feature professional speakers that deal with PD. APDA also sponsors a Golf Outing in June and a Walk-A-Thon in September. All three programs raise money for PD research. APDA’s mission is to “ease the burden and find a cure.” Their office number is 630-933-4392.
Golec is also featured in a video about Parkinson’s symptoms. Go to Facebook and type in “Parkinson’s more than motion” to view it. A free PD magazine entitled “More Than Motion” can also be ordered online.
Sun City resident Marylin Powers re¬minds us that April is Parkinson’s Dis¬ease Awareness Month. All Sun Citians with Parkinson’s disease symptoms are invited to attend Sun City/Huntley’s own PD Support Group, which meets on the first Monday of each month at 10 a.m. in the Fountain View Room.
Mogilner founded the group, which had its first meeting on June 1, 2009.
A wealth of research and personal lessons learned by its participants are exchanged at these monthly meetings. Topics in the past have ranged from searching for excellent medical facilities at local hospitals to the importance of music, art, occupational, speech, and physical therapies, as well as the value of yoga/tai-chi and dance classes.
Stressed at the gettogethers is exercise of all kinds on a continuing basis, along with the use of daily humor, optimism, and mental stimulation. Meeting under the support of Centegra, Kathy Segarra, Centegra WellnessCenter nurse, said she is checking neurology departments at local hospitals to speak at the support group.
“I figure that if [at least] one percent of the population has PD, that should be about 90 people among the 9000 residents in Sun City,” Mogilner said.
While the group has had 22 attendees several times, Alan said, “10 to 12 is a more likely number.”
“Over the next few meetings, we will probably be working with some of the problems of communication… To this end, I have spoken to the Theater Company and asked if they could provide a director/coach so we could put on a dramatic reading, another possibility might be a sing-along,” Mogilner said.
