The 10 doctors she consulted between 2016 and 2019 — four orthopedists, three neurologists, a rheumatologist, a podiatrist and her internist — reached disparate conclusions. One suggested she was clumsy. Others suspected her problem was primarily orthopedic or could find no clear explanation.
It wasn't until September 2019 that a scan revealed what Hardy-Fanta had come to suspect — a diagnosis she said several of her doctors had brushed off.
“These are the smartest people,” said Hardy-Fanta, now 71, whose husband is a Boston physician. “They really wanted to help” but appeared to be misled by her symptoms. “If someone’s falling that much, they should really pay attention.”
An odd way of standing
The falls started in 2016, shortly after Hardy-Fanta and her husband sold their house in a Boston suburb and began splitting their time between a condo in the city and what she described as their “dream home” in the Berkshires.
Hardy-Fanta had retired as director of a university think tank. Her fourth book on women and politics had just been published. She was in excellent health, which she regarded as a legacy from her mother, who remained mentally sharp and physically able until shortly before her death at age 100. Hardy-Fanta said she was looking forward to traveling with her husband and taking long bike rides along the scenic rural roads that snake through the Berkshires.
Around the time she began falling, Hardy-Fanta was contending with pain in her hips, left buttock and left foot as well as an inexplicable new stance. She noticed that she was standing on the outside edge of her left foot. She consulted a podiatrist, recounting her recent falls, which prompted his observation that she “sounded like a bit of a klutz.” The foot doctor prescribed a walking boot, which she wore faithfully, even though it aggravated her hip pain. Her internist had recently diagnosed bursitis, irritation of fluid-filled sacs near the hip joints, and recommended physical therapy. Her odd way of standing was seen as a response to her hip pain.
When neither the boot nor therapy alleviated her pain, she saw a rheumatologist for a possible joint problem. He ordered multiple MRI scans; other than mild arthritis in her hip, the scans found nothing significant.
Next stop was an orthopedist, who administered a cortisone shot. Over the next seven months, Hardy-Fanta received five shots from a series of doctors; four shots in a year are generally regarded as the maximum safe dose. They did little to quell the pain.
In August 2017, Hardy-Fanta caught her left foot and fell, breaking her arm which required surgery to repair.
At the time, she was falling every few weeks. She noticed that her left hand was sometimes involuntarily clenched and that her handwriting had become smaller and more constricted, and was at times illegible, even to her. Her speech had changed, too; it was softer and more rapid. Sometimes her husband had trouble understanding her.
She saw a neurologist who found “no evidence of a neurologic cause” of her symptoms. He recommended that she start gait training to prevent falls and continue physical therapy for the hip pain.
In November 2017, she consulted a second neurologist. A voracious reader of medical journals, Hardy-Fanta said she feared that her repeated falls and other symptoms might signal Parkinson’s disease. The progressive neurological disease affects movement and occurs when nerve cells in the brain deteriorate or die, causing a reduced level of the chemical dopamine.
When she asked the doctor whether she might have Parkinson’s, he told her it was unlikely. She had, he noted, neither the tremor, rigidity nor slowed movements characteristic of the disease.
“Her examination is reassuring and there is no evidence to suggest an underlying neurological disease,” he wrote, echoing the first neurologist.
Despite physical therapy and gait training to improve her balance and prevent falls, Hardy-Fanta’s hip pain worsened. Sometimes she needed to use a walker or a wheelchair, which decreased the falls.
An MRI in early 2018 revealed that she had developed avascular necrosis of her right hip. The debilitating, painful condition results in the death of bone tissue caused by a disruption of the blood supply. Causes include long-term high-dose steroid use; necrosis has been reported after cortisone injections.
In March 2018, Hardy-Fanta underwent a total replacement of her right hip, which temporarily lessened her pain. But she was alarmed to see that her left hand appeared more clawlike. She was also showing signs of a freezing gait, a temporary inability to move commonly seen in people with Parkinson’s.
In January 2019, a third neurologist diagnosed a “frontal gait disorder” and sent her for a PET scan to check for a progressive neurological disease. He told Hardy-Fanta that he wanted to rule out frontotemporal dementia, a rare disorder caused by the progressive deterioration of the brain. The devastating disease, which is similar to Alzheimer’s, results in changes in behavior and language.
The scan found no sign of dementia, but the neurologist suggested that if Hardy-Fanta was concerned about Parkinson’s, a specialized test called a DaT scan could provide clarity. The brain scan uses a radioactive tracer that illuminates dopamine activity. In those who have Parkinson’s, the scan shows reduced activity. The test cannot diagnose Parkinson’s specifically — most cases are diagnosed on the basis of symptoms and a physical exam — but it can help bolster a diagnosis when there is doubt.
The test, performed in September 2019, confirmed what Hardy-Fanta and her husband had feared: evidence consistent with neurodegenerative Parkinson’s.
Parkinson’s disease, which affects an estimated 1 million Americans, develops slowly over many years. Men outnumber women about 2 to 1. There is no cure but the disease is treatable, usually with medication. Its cause is largely unknown, although in some cases genetics or exposure to heavy metals and pesticides may play a role.
“We were very upset” by the diagnosis, Hardy-Fanta said. She is angry about what she regards as tunnel vision: The orthopedists seemed to attribute her pain to an orthopedic cause when it was likely a sign of Parkinson’s. And the neurologists had ruled out Parkinson’s because she did not display several hallmarks of the disease, including a tremor or rigidity, even though her soft speech, handwriting changes and clenched hand are common signs of the disease.
Hardy-Fanta said she particularly regrets receiving so many cortisone shots, which she believes might have caused the necrosis and necessitated a hip replacement.
To neurologist Michael S. Okun, medical director of the Parkinson’s Foundation, Hardy-Fanta’s case illustrates the relative paucity of knowledge about how the disease affects women.
Parkinson’s is not one disease, he noted. “There are a whole bunch of different subtypes of Parkinson’s,” said Okun, chair of the neurology department at the University of Florida.
Hardy-Fanta’s repeated falls, he said, while “a red flag symptom” are not typical of Parkinson’s in its early stages.
“We need to do a better job” making the diagnosis, Okun said. It is common, he added, for Parkinson’s patients to undergo unnecessary orthopedic procedures, including surgery, for symptoms that turn out to be related to the neurological disease and not a musculoskeletal problem.
In fall 2019, Hardy-Fanta began seeing a fourth neurologist, who specializes in treating Parkinson’s and related movement disorders.
The specialist prescribed Sinemet, a drug commonly used to treat the symptoms of Parkinson’s. Hardy-Fanta showed improvement, which clinched the diagnosis. (People who take the drug and don’t improve might have a different movement disorder, while a positive response points to Parkinson’s.)
The neurologist told Hardy-Fanta that her odd way of standing on the outside of her left foot was probably an early sign of the disease, as was the pain in her left foot and hips. And several of her falls were likely due to dystonia, involuntary muscle contractions that result in abnormal posture and impaired movements. Dystonia is a common symptom of Parkinson’s.
Hardy-Fanta said she and her family are adjusting to her life-changing diagnosis. She has taken up swimming and continues to exercise regularly and receive physical therapy designed to keep her active. She has planned several trips with her husband and carved out more time to spend with her two grown daughters and 10-month-old grandson.
While she is irked that her diagnosis took three years and involved numerous scans and unnecessary treatment, Hardy-Fanta is not sure that finding out earlier would have been preferable.
“Would I have wanted to know four years ago that I had Parkinson’s?” she asked. “I don’t know.”