Aug. 12, 2024 – Sharon Krischer was diagnosed with Parkinson’s disease back in 2009, after she noticed a tremor in her right foot. Her response to her diagnosis was determination – she decided to do everything possible to live her best life.
“Getting educated about how Parkinson’s affects women was key,” says Krischer, 72, a blogger and Parkinson’s disease advocate in Beverly Hills. She read everything she could online, even though information on how the disease affects women was sparse.
“I also found it was very important to find a peer group,” she said. “Talking to other women who have been diagnosed about what they have been through really helps.”
That’s key – as Parkinson’s is often thought of as a “male disease.” Yet its impact on female patients is undeniable.
Men are indeed more likely to be diagnosed – 1.5 time more likely. But an estimated 4 million women in the U.S. live with Parkinson's, according to data from Stanford University Medicine. These women often deal with different complications of the disease. For example, a recent international study found that often, the disease worsens faster in women and has a higher mortality rate.
For both sexes, Parkinson’s begins due to a breakdown of nerve cells in the section of the brain that dictates movement.
“Parkinson’s disease comes from a deficit of dopamine,” said Alice Flaherty, MD, PhD, director of the Movement Disorders Fellowship Program at Massachusetts General Hospital in Boston and a joint associate professor of neurology and psychiatry at Harvard Medical School. When these nerve cells die, they can’t make this important brain chemical. Once a patient loses 80% of dopamine-producing brain cells, they start to get Parkinson’s symptoms.
Parkinson’s in Women
Research published by the Cleveland Clinic found that menopause often makes a woman's symptoms worse, due to loss of estrogen.
“Estrogen may protect against the disease by reducing neuroinflammation,” said Daniel Kremens, MD, JD, vice chair for education in neurology and co-chief of the Parkinson's Disease and Movement Disorders Program at Thomas Jefferson University in Philadelphia.
He noted that things in the environment, like pesticides, have also been linked to a higher risk – though “these exposures are associated more highly with jobs traditionally done by men,” he said.
There’s also growing evidence that head injuries – which also tend to happen more in men – are linked to a higher risk of Parkinson's disease. And men may have higher levels of alpha-synuclein, a protein that may be involved in the development of Parkinson's, than women have, he said.
Because men are more likely to have Parkinson’s, it might be challenging for a woman to even know she has the disease.
“There can be delays when it comes to women being diagnosed with Parkinson’s,” said Jori Fleisher, MD, MSCE, FAAN, a movement disorders neurologist and associate professor of neurological sciences at Rush University in Chicago. “This is why it’s so important to remember that you know your body better than anyone else. If something feels different, tell your doctor. If you’re not hearing appropriate concern from that doctor, you should absolutely get a second opinion.”
While Parkinson's symptoms can vary from person to person, Kremens said that tremors are more common in women as a first presenting sign. Women may also be more likely to have problems with balance, which may progress to falling, he said.
According to data from the Michael J. Fox Foundation for Parkinson's Research, women have restless legs as a symptom more often than men do and can also develop reduced facial expression more frequently.
Parkinson’s Treatment in Women
The drug levodopa, often used as a dopamine replacement agent to treat Parkinson’s, “remains the gold standard,” said Kremens. But women are at a higher risk of levodopa-related complications such as dyskinesia, or involuntary, uncontrolled muscle movements, he said.
The Parkinson’s Foundation also says that medication can build up in a woman’s system because women tend to weigh less than men, so it’s important to work with your doctor to fine-tune dosage.
Another treatment option is deep brain stimulation, in which electrodes are implanted in a patient’s brain to interrupt the signals that cause Parkinson’s symptoms.
“Deep brain stimulation, which is a very effective therapy for motor fluctuations, is more likely to be done in men than in women,” Kremens said, noting that this is despite the “fact that women who have deep brain stimulation reported greater improvement in their quality of life.”
If medication doesn’t work for you, or your symptoms worsen, it’s important to ask your doctor about this option.
Slowing Parkinson’s Symptoms
First and foremost, exercise. Specifically, high-intensity interval training, or HIIT.
“We know that high-intensity interval training can slow the course of Parkinson’s,” said Flaherty. And new research from Yale School of Medicine found it can even reverse the brain decline that Parkinson’s causes.
Even if intense cardio is not for you, lighter workouts can reduce the impact of early-stage symptoms. A study by Japanese researchers found that simple exercise like a daily walk, cycling, and gardening may stave off Parkinson's symptoms for years.
Long-Term Care Strategies
Caring for emotional health is key, namely in women.
“Women do tend to report more anxiety and depression than men,” said Kremens. “It’s unclear whether that’s directly related to Parkinson's disease itself or other factors, such as the fact that women are more likely to have less social support than men and are more likely to live alone.”
Therapy can be very helpful when it comes to talking through your feelings about a diagnosis.
And don’t try to navigate your treatment alone.
“I think it’s a very good idea for a woman with Parkinson’s to bring a family member or friend with her to appointments,” said Flaherty. “Find an ‘illness buddy’ for yourself, who can ask questions you never thought of, and check for any errors regarding information or treatment. Once you and your companion outnumber the doctor, it can actually lead to a better outcome.”
“If you’re a single woman, it’s important to find yourself a care partner,” said Fleisher. If family or friends can’t help, finding someone within your community can be a good option.
“Think toward the future – what will you need? Who will be the best person to assist you? Always surround yourself with as much support as possible,” she advised.
Krischer is living proof of the power of receiving, and providing, that support. She started the popular Parkinson’s website Twitchy Woman, which offers extensive peer support through webinars and one-on-one assistance that matches newly diagnosed women with volunteer mentors living with the disease. Krischer is doing well medically and is an avid traveler around the world with her husband.
“My advice is to modify your life only as needed,” she said. “For example, if you’ve been taking a yoga class you enjoy, don’t switch to an ‘easier’ class until you might need to. Your attitude is very important – don’t give up. You can live well with this disease.”
