Dr. Mindy Lokshin, a Reno life coach who used to work as a family physician, has multiple family members with Parkinson’s disease. All of them live in other states, and as she watched them navigate their diagnoses and begin to access care options, she realized that in Northern Nevada, such options were less plentiful.
“Those places have resources we don’t,” Lokshin said in a phone interview.
In 2021, she and a few locals—mostly people who have the disease or care for someone who does—launched the Parkinson Support Center of Northern Nevada. It started as a website, then added support groups. Early in the group’s existence, Lokshin and her peers conducted focus groups to find out what people with Parkinson’s, their families and their caretakers most need.
The answers, according to Lokshin: “When we first get diagnosed, we want to have someone we can call, kind of like your AA sponsor, someone to … get a cup of coffee with and say, ‘Hey, this is what’s going on with me. Is that normal? What should I do?’”
Saying that she’s “not into reinventing wheels,” she modeled the group after a similar organization whose programs she admires, the Parkinson’s Association of San Diego.
“Our mentors are volunteers, people with Parkinson’s or their care partners,” Lokshin said. “We have six right now and a few other people going through the training. The mentors get matched with people newly diagnosed, or their care partners wanting help.”
A shortage of doctors
Parkinson’s disease affects the part of the brain that controls the body’s movements. It can cause difficulty with posture, balance, speech and swallowing. In Northern Nevada, more than 5,000 people live with Parkinson’s, according to the PSCNN’s website. Nationwide, it’s about a million, according to the national Parkinson’s Foundation.
Parkinson’s itself is not the only problem. The supply and demand equation for care is far off balance, and it threatens to get even worse.
According to a 2018 paper from the Journal of Parkinson’s Disease, the disease, while not communicable, is “the fastest-growing neurological disorder in the world”—fast enough to call it a “pandemic.” Between 1990 and 2015, according to the paper, the number of people around the globe with Parkinson’s doubled to more than 6 million. The authors attribute this increasing prevalence to an aging population. They project that the number could double again, to more than 12 million, by 2040. They also project: “Additional factors, including increasing longevity, declining smoking rates, and increasing industrialization, could raise the burden to over 17 million.”
Lokshin described a typical course of action for a Northern Nevadan who’s diagnosed with Parkinson’s: “They get shipped around doctor to doctor; they finally get a diagnosis. They’re handed the pills, and they’re told, ‘See you in six months.’ … And they feel like they’ve dropped off a cliff.”
That’s because there’s a shortage of neurologists in the region.
“I think most neurologists are comfortable making that diagnosis,” said Dr. Danny Truong, a neurologist who moved to Reno in 2023 and began practicing at Renown Health in September. He said that often, once a person learns they have Parkinson’s, a general neurologist will take care of them for a few years. Then, once the disease progresses and becomes more complex, they’re likely to seek out a specialist.
Truong has completed a one-year movement-disorders fellowship-training program in Texas, which qualifies him as a specialist in Parkinson’s and other movement disorders. As far as he knows, he and Renown’s Dr. Christopher Way are the only two fellowship-trained Parkinson’s specialists in Reno. Historically, he said, many local patients have sought care in California—in San Francisco, Davis or Los Angeles.
“Before I started, there was a long wait list,” Truong said. “My schedule, definitely, within the past four to five months, it filled up. I don’t have any empty spots in the next couple weeks.”
Added Lokshin: “Some people even call Nevada a neurology desert.”
Unequal access
As often happens when there is a shortage of care, certain groups get short shrift.
“I am sure that there are hundreds of people with Parkinson’s in our Hispanic community who are not getting diagnosed,” said Lokshin.
Dr. Truong pointed out that patients on Medicare (the federal health insurance system for people 65 and older, which currently enrolls more than 550,000 Nevadans) encounter a stumbling block.
“Once people are on Medicare, they cannot qualify for any financial assistance for medications that are not the generic forms,” he said. “There are medications that are incredibly good, but once you get into Medicare, they can range from $50 a month to $500 a month. These are medications that have been out for five, 10 years. They have very good clinical evidence. And in my experience, people have done really well on it”—but for 80 to 90 percent of his patients, he estimates, these treatments are simply too expensive.
That’s just the people who are seeing a specialist. The Michael J. Fox Foundation for Parkinson’s Research reported in 2023 that, due to various barriers, nearly half of Americans with Parkinson’s don’t even see a neurologist.
New legislation
In Nevada, steps are being taken at the legislative level to address the critical gap in care and information. On June 12, 2023, Nevada Senate Bill 390 passed unanimously, “authorizing the Department of Brain Health at the University of Nevada, Las Vegas, to establish and maintain a system for the reporting and analysis of certain information on neurodegenerative diseases.”
In the long run, a statewide reporting system could eventually help alleviate the shortage of doctors, said Dr. Truong. “Unless people speak out and make the need known, other people won’t recognize it. It is a definite necessity—to be involved in advocacy and in legislation.”
Meanwhile, the PSCNN does what it can and has long-term plans to expand, ideally one day transitioning from a remote organization to one with a permanent office.
“We offer a phone line, which is mostly me answering it these days,” said Lokshin. “I’m hoping to get other people, because we’re all-volunteer. We don’t have any paid staff.
“We offer a lot of educational programming,” she added—often in the form of a national expert doing a webinar for a Northern Nevada audience over Zoom, and sometimes in the form of Lokshin doing local outreach.
“I’ll give a talk to anyone … any place we can get the information out so that it normalizes (Parkinson’s),” she said. “So, when you see someone shuffling along and having troubles getting through a door, you won’t yell, ‘Come on guy, move!’ This is just what happens. … We just want to normalize the disease, because it is so common, and people feel so isolated and all alone. And our tagline is: ‘No one should have to face Parkinson’s disease alone.’”
The Parkinson Support Center of Northern Nevada is hosting a fundraiser, “An Evening of Music and Motion,” at the National Automobile Museum in Reno, at 5 p.m., Thursday, April 18, featuring a celebrity panel discussion at 7 p.m. with Vanessa Williams, Rasheda Ali (whose father, Muhammad Ali, lived with Parkinson’s for more than 30 years), Dr. Deanna Brown Thomas (activist and daughter of James Brown) and professional off-road racer Shelby Hall. Learn more about the event at drivetowardacure.com/music-and-motion-reno-2024, and learn more about the PSCNN at www.pscnn.org.
My Partner, who is 66 years old, was diagnosed with Parkinson’s disease last year. We noticed that he was experiencing hallucinations, slow movement, disturbed sleep, and twitchy hands and legs when at rest. He had to stop taking pramipexole (Sifrol), carbidopa/levodopa, and 2 mg of biperiden because of side effects. Our family doctor recommended a PD-5 treatment from natural herbs centre which my husband has been undergoing for several months now. Exercise has been very beneficial. He has shown great improvement with the treatment thus far. He is more active now, does more, and feels less apathetic. He has more energy and can do more activities in a day than he did before. As far as tremors I observe a progress, he improved drastically. I thought I would share my husband’s story in case it could be helpful, but ultimately you have to figure out what works best for you. Salutations and well wishes