Movement can be very difficult for people with Parkinson's disease, as shaking and stiffness play havoc with balance, coordination and gait.
There are many different tricks Parkinson's patients can use to improve their walking and avoid injury from a bad tumble -- but a new study reveals that people often have to figure them out on their own, with no help from either a doctor or physical therapist.
Nearly one-quarter of Parkinson's patients have never tried well-known strategies proven to help improve movement, according to a report published online recently in Neurology.
"While compensation strategies are commonly used by persons with Parkinson's disease, their knowledge on the full spectrum of available strategies to improve walking are rather limited," said lead author Dr. Anouk Tosserams of the Radboud University Medical Center in the Netherlands.
Parkinson's is a disease of the nervous system that affects a person's ability to control their movement. It causes people to shake, have stiff muscles and limbs, move slowly, and struggle with walking, balance and coordination.
Symptoms worsen over time, and in advanced stages patients will require a wheelchair and full-time nursing care.
The disease stems from a lack of dopamine in the brain, and doctors often prescribe medications designed to combat this deficiency as "standard therapy," said Brett Benedetti, associate director of research programs at the Michael J. Fox Foundation for Parkinson's Research in New York City.
But Tosserams said patients are often left to their own devices to figure out strategies that will help them get around despite their Parkinson's.
"These strategies are typically spontaneously 'invented' by persons with Parkinson's disease," she said. "Until 2019, only anecdotal reports of these creative strategies were published."
That year, a team led by senior researcher Dr. Jorik Nonnekes at Radboud University reviewed hundreds of patient videos to collect 59 strategies, which they categorized into seven groups:
It's hard to say which of these are better than the others, because it comes down to the individual patient, Benedetti said.
"What may work in one person with Parkinson's with a particular type of gait dysfunction may not work in another," he said. "The approach is going to be something that is going to be more tailored to each individual and what works best for them."
Now that Nonnekes had a list of strategies, he and Tosserams set out to see how many Parkinson's patients knew about them.
Surveying more than 4,300 patients, the investigators found that 35% suffered from walking difficulties bad enough to affect their day-to-day life. About 52% had one or more falls during the previous year.
But nearly one in five (17%) had never heard of these strategies, and 23% had never tried any of them, the researchers reported.
These tricks aren't well-known "because resources on the available strategies are lacking," Tosserams said, adding that researchers previously found that health care professionals also often lack specific knowledge and skills on this subject.
"Persons with Parkinson's disease often invent strategies themselves, but there is no platform via which these new strategies can be shared to inspire other persons with Parkinson's disease and health care professionals," she said.
The best-known strategy was external cueing (47%) followed by internal cueing (45%).
When Parkinson's patients knew about a strategy and tried it, a majority said it had a positive effect on their movement.
For example, 76% said changing their balance requirement helped, and 74% said altering their mental state helped.
But the strategies' effectiveness changed depending on the situation in which patients found themselves.
For example, internal cueing helped patients start walking (73% success rate), but it was less useful when trying to stop walking (47% success rate). Similarly, visualizing movement had an 83% success rate walking outdoors, but only a 55% success rate when trying to navigate a narrow space, the study authors said.
"The symptoms can be highly variable," Benedetti said. "They come and go. They are provoked by certain circumstances that a person finds themselves in, like trying to walk through a doorway or a particular corner or turning around."
Symptoms can also be aggravated by doing other things at the same time.
"Adding a cognitive load or a bunch of tasks while you're walking can make that symptom worse under certain circumstances," Benedetti said.
Patients and their loved ones should bring up their specific movement problems with their health care team, rather than try to figure things out on their own, said Dr. Shyamal Mehta. He is an associate professor of neurology and consultant with the Mayo Clinic's Division of Movement Disorders, in Phoenix, and was not involved with the study.
"It is very important to discuss gait and balance problems with the treating physician when they first begin and not wait until later," Mehta said. "Introduction of the appropriate techniques depending on the problem can go a long way in preventing falls. Many times, the caregiver can remind the patient to use those techniques when they see the patient having difficulties with ambulation."
Tosserams said researchers are working to address this unmet need by developing an online site with information on walking difficulties and compensation strategies for people with Parkinson's.
She said it would contain background information and video-illustrated compensation strategies.
"Persons with Parkinson's disease and health care professionals will also have the opportunity to send us their own videos of new strategies, to inspire others," Tosserams said.
The researchers aim to launch the new website by year's end.
The U.S. National Institute on Aging has more about Parkinson's disease.
SOURCES: Anouk Tosserams, MD, Radboud University Medical Center, Nijmegen, the Netherlands; Brett Benedetti, PhD, associate director, research programs, Michael J. Fox Foundation for Parkinson's Research, New York City; Shyamal Mehta, MD, PhD, associate professor, neurology, and consultant, Mayo Clinic Division of Movement Disorders, Phoenix; Neurology, Sept. 8, 2021, online