This story is part of our December 2025 issue. To read the print version, click here.
Steven Tincher’s body stiffens when he sits for too long. He may
need assistance standing and securing his mobile phone in a
pocket of his cargo pants. He may need help with the twist-top on
the small metal vial containing the medication he takes every two
and a half hours.
But relief can occur quickly. Like a boxer warming up while
entering a ring for a match, when Tincher rises, he periodically
unleashes a few quick air thrusts, sometimes with one arm,
sometimes both. A retired financial analyst and computer systems
integrator, Tincher is a three-year participant in the Rock
Steady Boxing program in West Sacramento. He doesn’t have
athletic career aspirations, but the 74-year-old Sacramentan
studied martial arts for many years.
He was also diagnosed with Parkinson’s disease five years ago.
“I go into what’s called an ‘off’ stage; it’s tightness all
over,” says Tincher, whose rapid-fire repeats are kung
fu-oriented movements. “My hands curl, the tremors start up. I
try to loosen that up. My limbs become stiffer; my whole body
becomes stiffer. I am just trying anything to break that loose.
Sometimes, it works; sometimes it doesn’t.”
The Rock Steady program is among the region’s more than 40
Parkinson’s disease care resource programs, including several
additional international exercise organizations, such as Dance
for Parkinson’s. It’s also one component of the Sacramento
region’s reputation as a national hub for medical, mental, social
and technological innovation to combat Parkinson’s disease.
In the competitive health care business environment, the Capital
Region’s major organizations — Dignity Health, Kaiser
Permanente, Sutter Health, UC Davis Health and Veterans Affairs
health care — collaborate with the Parkinson Association of
Northern California, or PANC. The objective is to increase
awareness in the medical and public communities.
The rising prevalence of Parkinson’s
Established in 1996 and headquartered in Folsom, PANC is among
the country’s most prominent independent organizations focused on
movement disorders. It includes physicians, physical therapists,
speech pathologists, social workers and other providers.
It started about the same time Dr. Suketu Khandhar, a neurologist
and the longtime medical director of Kaiser Permanente’s
Comprehensive Movement Disorders Program, orchestrated a meeting
at an international conference with Dr. Norika Malhado-Chang of
UC Davis and Dr. Nicklesh Thakur, an osteopathic specialist with
Sutter Health. Movement disorder specialists were few.
Steven Tincher, a retired financial analyst and computer systems
integrator, has participated in the Rock Steady boxing program in
West Sacramento the past three years. The movement helps with his
Parkinson’s. (Photo by Fred Greaves)
“We were all new to the business and new
to Sacramento,” says Khandhar. “It was not just sharing our
knowledge from what we had learned in our fellowships, but
sharing what processes work best for some of the same things all
of our patients experience within each of our institutions.
“It was to learn from each other and to be able to discuss new
treatments and technologies, and then to be able to have
representation from the Parkinson Foundation present to witness
the conversation and be part of the dialogue.”
Malhado-Chang and Dr. Lin Zhang, also a neurologist, now
co-direct the UC Davis Health Parkinson’s Foundation Center of
Excellence.
It opened in Midtown Sacramento in January 2024 as the region’s
first Parkinson’s disease multidisciplinary clinic. The group
from the five health care systems calls its quarterly meetings
Journal Club. With PANC representation, the collective examines
the increasing prevalence of the disease.
“We talk about new treatments, and we invite the industry to come
and kind of share if there is something new, if they are a
sponsor,” says Khandhar. “It’s really been (that way) for the
past 15-plus years. It gives us an opportunity to grow together.
It’s given us an opportunity to share. It’s allowed us to convey
to our constituents, whether it’s PANC or our own patients.”
Related: Move Your Body:
New approaches to physical therapy take a swing at Parkinson’s
disease
More than 1 million people in the United States and an estimated
10 million globally have Parkinson’s disease, according to
Harvard Medical School. Some experts believe the number will
double by 2040.
That predicted statistic is difficult to quantify, says Khandhar,
but he believes there are three reasons for increased diagnoses:
an aging population, exposure to toxic substances in our
environment and more knowledge among non-neurologist physicians
who recognize Parkinson’s symptoms.
“Many of us believe that Parkinson’s can be triggered by exposure
to harsh chemicals in our environment, maybe the water you drink,
maybe certain kinds of pesticides and herbicides used in our
farming industry or on our military bases,” says Khandhar.
“Unfortunately, we are reliant on some of these things. And yet
this stuff seeps into our water, it seeps into our food, and it
may generate some sort of opportunity to breed the condition.”
California’s vast Central Valley agricultural industry has the
dubious nickname “Parkinson’s Alley.” A 2011 UCLA study found
that Central Valley residents under the age of 60 who lived near
fields where the pesticides paraquat and maneb were used between
1974 and 1999 had a Parkinson’s rate five times higher than other
residents in the area.
Boxer and activist Muhammad Ali, who died in 2016, and actor
Michael J. Fox, who was diagnosed in 1991, publicly battled
Parkinson’s and both established foundations to support research
and awareness. The icons’ work put the disease in public focus.
The Michael J. Fox Foundation for Parkinson’s Research, which the
actor founded in 2000, has lobbied for a ban on agricultural
pesticides. The actor’s prominence and willingness to share his
personal life, including in the 2023 Netflix documentary “Still:
A Michael J. Fox Movie,” have generated increased public
awareness.
James Parkinson, for whom the disease is named, described its
symptoms in 1817 as “involuntary tremulous motion, with lessened
muscular power, in parts not in action and even when supported.”
A modernized definition details Parkinson’s disease as a
neurodegenerative disorder that causes a decline in motor skills,
balance, speech and sensory functions, eventually affecting the
autonomic nervous system.
For Steven Tincher, symptoms vary, but they include a common
trait, the “Parkinson’s stare.”
“I’m very sensitive to it; I’ve learned that when I am out on the
street or in a public situation, to look people in the eye and
greet them,” Tincher says. “It breaks the ice that I am not a
crazy guy because of a tremor or drugs or whatever people think
when they see you.”
Moving toward a cure
Dr. Khandhar cites numerous activities, from yoga to tai chi,
from boxing to tandem cycling, that incorporate large-amplitude
movement. A groups’ sense of community and support are
invaluable.
“If you summarize the condition into one word, it would be the
word ‘slow,’” says Khandhar. “Patients get slower in their
activities, in their motor dexterity, in their mobility, in their
gait. So mobility becomes a cornerstone of treatment, of course,
along with medication and other interventions.
“If I introduced a type of exercise program to a patient who
absolutely hated it, even though I know it to be good for them,
they are not going to do it. I love the fact that there are so
many opportunities, and I think the Sacramento Valley in general
has been very open to trying different things. Maybe it’s just
the culture of the area, I don’t know. But it’s great. If you
actually travel elsewhere in the country, it hasn’t carried the
same level of opportunity and diversity.”
Kathy Van Hoof, a former professional dancer with the Sacramento
Ballet and Capital City Ballet, has taught Dance for Parkinson’s
classes for 14 years. The program, which began in New York more
than 20 years ago, has more than 450 outlets. With colleagues
Elaine Silver Melia and Lisa Ferrin, Van Hoof conducts the free
weekly classes at the Sierra 2 Center for the Arts & Community in
Sacramento. The one-hour sessions are also available virtually.
Kathy Van Hoof, a former dancer with the Sacramento Ballet, has
taught Dance for Parkinson’s the past 14 years in Sacramento.
(Photo by Fred Greaves)
“It’s just become much more obvious how important movement is,”
says Van Hoof. “Dance has sort of this special element to it
because it’s deliberate movement. You are deliberately moving to
the music, so there’s that cerebral element to it, too. It’s not
that the other (exercise) programs don’t, but dance has a certain
intention.
“People come, and they are hesitant. They say, ‘Oh, I can’t
dance, I can’t do this.’ But they keep coming back. That’s the
litmus test. People say, ‘I didn’t want to come, I’m too tired.’
But they say afterward, ‘I feel better now.’”
Rock Steady Boxing began in 2006 and now has more than 800 global
affiliates. It’s headquartered in the United States but has
outlets in 17 countries, from South Korea to Norway to Ethiopia.
The concept was co-founded by former Indiana attorney Scott
Newman, a Parkinson’s patient, and his friend Vince Perez, an
accomplished boxer. They believed non-contact boxing might be
neuroprotective and slow the disease’s progression.
Its classes are designed to improve balance and coordination for
patients with Parkinson’s disease. Workouts incorporate quick and
repetitive punch combinations, stretching, core workouts, hitting
heavy bags, circuit weight training and resistance training.
Participants wear boxing gloves but don’t face opponents or enter
a ring.
“It gives me some cardio; it works with my limitations,” says
Tincher, who resides in an independent living community. “But it
also gives me a social environment where I am constantly in
contact with other Parkinson’s patients. We compare notes and
tell stories. Sometimes, they’re about grandkids, sometimes
they’re about Parkinson’s.”
Tincher also began a gene therapy clinical trial program in
Southern California last May. He travels often for tests and
treatments that include spinal taps. He will be monitored for
five years.
“It’s called a study, but it’s an experimental gene-editing
program,” Tincher says of the Prevail Therapeutics program.
“They’re trying to modify a gene which they think is related to
about 12 to 15 percent of Parkinson’s patients. Theoretically, it
can stop the progression of Parkinson’s or even cure it. We will
see if it happens.”
Representatives from all regional health care systems, sponsors
and exhibitors were among the 900 attendees at the recent PANC
Annual Education Conference in Roseville. The motto for the
day-long series of seminars, panel discussions and presentations
was “Attitude Is Everything: Strategies for Success.”
Actor Ryan Reynolds and Dr. Suketu Khandhar, a movement disorder
specialist for Kaiser Permanente, at a national conference for
the Parkinson Association of Northern California in Roseville in
October. (Photo by Getty Images)
Harry Starkey of Sacramento, president of PANC’s board of
directors and a Parkinson’s patient, offered opening remarks and
led a talk on a respite caregivers funding program.
Will Newby of Rune Labs in San Francisco discussed StrivePD, an
iPhone and Apple Watch app Parkinson’s patients can use to track
motor symptoms such as tremors and dyskinesia (uncontrolled
movements), along with daily routines and treatment use.
“It’s a compassionate community,” says Starkey, diagnosed with
Parkinson’s two years ago. “It’s kind of a blessing I didn’t
want. But I am just daily inspired by the cooperation in this
community.”
Starkey is also committed to the Neptune Project. It honors
French sailor Bertrand Delhom, the first sailor with Parkinson’s
to complete a round-the-world race in 2024. A benefit regatta and
sailing program for Parkinson’s patients is planned in San
Francisco in early 2026.
“The sailing idea is unique,” says Khandhar. “You always think of
Parkinson’s patients potentially being off balance. When we
compare or make an example of someone being off balance, we ask,
‘Do you feel like you are rocking on a boat?’ I am very curious
and excited about a sailing program for patients and for those
advocating for those with Parkinson’s.
“Maybe we have self-defined and in turn, self-restricted what
patients can or cannot do. And maybe we need to break those
barriers. Maybe if a Parkinson’s patient can go on a sailboat,
feel happy, get the wind in their face, do something they love,
be out of water, and feel free, then great. More power to them.”
–
Stay up to date on business in the Capital Region:
Subscribe to the Comstock’s newsletter
today.