Carly Simon has shared that she is living with Parkinson’s disease, speaking publicly for the first time about the diagnosis after spending recent months largely out of the spotlight. Parkinson’s is a progressive brain disorder that affects movement and can also involve non-motor symptoms such as sleep, mood and cognition changes. Some symptoms, including loss of smell, constipation, depression and REM sleep behavior disorder, can appear years before a formal diagnosis.
The 81-year-old musician issued a statement to ABC News, saying she needed time to come to terms with the condition before addressing it publicly.
“So many people have written to me, kindly wondering about my relative silence, asking how I am and what I have been doing. The truth is, I’ve been learning how to live with Parkinson’s disease,” Simon said.
She explained that accepting the news and deciding how much to disclose was not immediate.
“It has taken me some time to understand the diagnosis, to adjust to it, and to decide how much I wanted to say about it publicly.”
Simon described the way the illness can fluctuate, with some days proving much harder than others.
“Some days I’m so tired I can’t get the day moving at all. On others, it gives me a little more room to move, think, work, and feel like myself.”
Before receiving the diagnosis, Simon said she believed her physical limitations were tied to arthritis in both knees and one hip. That led to three separate joint replacement operations.
At first, she thought lingering mobility difficulties were part of her recovery. Instead, the problems became more severe over time.
“But my mobility continued to worsen. I had trouble standing up from low chairs and deep couches without someone offering me an arm,” she said, adding that there were periods when she could not walk without ‘considerable help’.
Parkinson’s is usually identified through a clinical evaluation rather than a single definitive test. Doctors typically review a patient’s medical history, ask about symptoms and carry out neurological and physical examinations, and they may order additional tests to rule out other conditions. Mayo Clinic notes that a diagnosis can take time and may involve follow-up appointments with a neurologist who specializes in movement disorders.
Simon said she underwent a lengthy evaluation at the Mayo Clinic before doctors confirmed the condition and began treatment for stiffness and related symptoms.
The disorder is progressive and affects the nervous system, most notably movement. According to the Parkinson’s Foundation, about 1.1 million people in the US are currently living with Parkinson’s, while close to 90,000 new cases are diagnosed every year. The foundation also says that number is expected to rise to 1.2 million by 2030.
Symptoms commonly linked to the disease include tremors, rigidity, slower movement and difficulty with balance. It can also affect mental and emotional health, contributing to issues such as depression, anxiety, apathy and changes in cognition.
Although tremors are often the symptom most people associate with Parkinson’s, the Michael J. Fox Foundation says the disease can produce many other effects that are less obvious. Parkinson’s Foundation materials similarly note that less visible symptoms can include facial masking, softer speech, sleep disorders, loss of smell and changes in mood and thinking.
Those can include sleep-related problems such as insomnia, excessive daytime tiredness and REM behavior disorder. Some people also notice their voice becomes softer or their speech less clear.
A reduced sense of smell is another frequent symptom and may appear long before someone is formally diagnosed.
Additional complications can include memory and thinking changes, in some cases progressing to dementia, as well as orthostatic hypotension, which can trigger dizziness after standing up. Dystonia, which causes painful and sustained muscle contractions, is also among the lesser-known symptoms.
The foundation further highlights facial masking, where slowed movement limits facial expression, along with the same fatigue and apathy Simon referenced in her remarks.
Simon said apathy has been among the most difficult parts of the illness to put into words.
“It is not simply sadness or laziness. It is as though the part of the brain that sends out invitations to participate in life has temporarily misplaced the guest list,” she said.
She also revealed that during the same period she underwent treatment for basal cell carcinoma on her face. According to Simon, the procedure changed her appearance and made her more hesitant about being seen in public.
“Between my mobility issues, the Parkinson’s diagnosis, the surgery, and the emotional effects of it all, withdrawing from public view was the most palatable reaction,” she said.
Even with those setbacks, Simon said she has remained creatively active and is preparing to release new music. Her upcoming album, Comes in Waves, is scheduled to arrive on August 14.
“Working on the music gave shape to days that did not always have much shape,” she said. “It reminded me that illness can change your life without becoming the whole of your life.”
Closing her statement, Simon thanked her loved ones, caregivers and doctors for their support. The singer-songwriter, whose career has stretched across more than 50 years and includes two Grammy Awards and an Academy Award, ended with a clear message: “I am still very much here.”