By DOANE YAWGER
At first you might not be able to finish a trip to the grocery store, continue gardening chores or go out to eat. These are some signs you may be suffering from Parkinson’s Disease, a fearsome illness that get progressively worse over time.
Joann Tsokos of Sacramento is an expert on the subject. A neuroscience account executive, educator and Northern California area manager with the biopharmaceutical company Abbvie of North Chicago, Ill., she travels all over the northern region of the state, to the East Bay Area, Redding, Reno and the San Joaquin Valley, to brief those interested in the disease and the developing methods to ease patients’ suffering and improve their quality of life.
Tsokos was the guest speaker for Merced’s Parkinson’s Disease Support Group which met Wednesday morning at Park Merced Assisted Living on M Street. About 17 people, including three watching virtually, took part in the 90-minute informational session.
There are an estimated 10 million people in the world suffering from the neurological disease, including 1 million Americans. About 60,000 new cases are diagnosed every year. About 20 percent of the Parkinson’s diagnosis affect people under the age of 50, Tsokos said.
She said Parkinson’s Disease victims suffer from slowness of movement, stiffness, dragging of their feet, slowness of speech and mental fatigue.
Initially Parkinson’s Disease sufferers may experience loss of smell, constipation, sleep disturbances, tremors and mobility issues. It’s a long-term progressive disease that sometimes isn’t diagnosed for 10 years.
The cause of the disease is unknown.
Exposure to pesticides, herbicides and tainted well water are listed as possible Parkinson’s Disease triggers. The disease can be diagnosed by a neurologist and there are standard tools used to identify the disease in patients. Also involved in subsequent patient therapy programs are movement disorder specialists.
“Parkinson’s Disease is a progressive disease and no one’s symptoms are identical. It advances differently for everyone, with different rates and speed,” Tsokos said. “There are options out there and the goal of therapy is to make people aware of options and have better discussions with their doctors and neurologists. I love education and empowerment.”
Parkinson’s Disease arises when the levels of dopamine in the brain decrease. These fluctuations in dopamine levels and motor functions can be difficult to manage as the disease advances. As the disease advances, medications to treat it can become less effective.
“We have to be strategic in replacing dopamine levels. We need to find the ‘treatment window’ or sweet spot as people respond to the medication over time. It’s a daily challenge maintaining dopamine levels,” Tsokos said.
The drug Levodopa is absorbed in the small intestines to replace dopamine and it’s a challenge to figure out the timing of medication and the interval between dosing. Relief from symptoms can last two, four or six hours.
But there are ways to help.
Tsokos called attention to Duopa, a prescription medication which is delivered differently from regular oral doses. The new delivery method-system which has been around for about seven years is placed near the abdomen.
A gastroenterologist makes a small incision and inserts a portable pump during a 30-minute outpatient procedure. This insertion of durable medical equipment is 100 percent covered by Medicare insurance, according to Tsokos. Specialty pharmacies are called in and there are nurse care managers, phone support, nurse educators and nurse ambassadors available who can go to a patient’s home during treatment.
Wednesday’s Support Group session was moderated by Amie Marchini, owner of Park Merced Assisted Living which is home to more than 60 people. The support group meets on the third Wednesday of the month at 10 a.m. at Park Merced. More information on the meetings of the support group can be obtained by calling (209) 384-3300 or http://www.amieseniorcare.com.
Doane Yawger of Merced is a semi-retired newspaper reporter and editor.