For months Liz Day, then 41, experienced shoulder and neck pain. When physical therapy failed to reduce her pain, she followed up with doctors and learned that young onset Parkinson’s disease was the cause. Six years later, Day recently ran the New York City Marathon and hopes to change the conversation around young onset Parkinson’s disease.
“I’d love to influence doctors and health care providers to talk about the illness in a different way and to not say things like, ‘Something's really wrong with you’ or ‘This really is a terrible illness and I don’t want to give you a diagnosis because it’s bad or degenerative or incurable,’” the now 48-year-old from Brooklyn told TODAY. “We know that people’s attitudes make a difference and stress exacerbates symptoms and talking about it in that way (isn’t) helpful.”
Shoulder and neck pain with no relief leads to a diagnosis
In 2015, Day thought too much texting in bed caused her neck and shoulder pain. But after five months of physical therapy, she didn’t improve.
“They said I should just go to a neurologist and I was completely shocked. I was like ‘The neurologist, why?’” she explained. “I thought I was the most healthy person in the world and was very proud of myself that that I took no medication.”
She visited a doctor who recommended an MRI scan and bloodwork. While everything came back normal, the doctor wanted to chat with her.
“I was like, ‘Why would I go in and talk to you if the tests were normal?’” she said. “I got there and he said, ‘You know something’s really wrong with you, right?' And I was like, ‘No, what are you talking about?’”
He said she could have some kind of stiff person syndrome, but shied away from diagnosing her.
“He said, ‘I couldn’t really say what it is. It doesn’t have the feel of idiopathic Parkinson’s. But that’s the only one it would be with the test results,’” she recalled. “He basically started to cry and was like, ‘You have a 9-year-old daughter and that’s a really terrible diagnosis and I don’t want to do it to you.’”
The doctor recommended a second opinion and that doctor confirmed that Day had Parkinson’s disease.
“The doctor was almost joking about my symptoms, he’s like ‘Wow, you are really slow,’” she said. “By that point I really had stress, which exacerbates everything … I went super downhill right after the diagnosis, probably because of the stress.”
Doctors wanted her to take dopamine agonist to treat some of the symptoms, but she was unsure about it.
“I wasn’t quite ready for that yet,” she said. “I immediately changed my diet. I immediately started exercising.”
Exercise can help people with Parkinson’s disease, James Beck, chief scientific officer of the Parkinson’s Foundation, said.
“It’s not a cure-all, but it does wonders to help to manage symptoms, keeps people moving, which is really important, helps maintain muscle strength,” he told TODAY. “It’s a rising tide that raises all boats … helping people to live a better life.”
Day did eventually start taking medication and her symptoms waned. But it was tough being so young and having a condition often associated with older people.
“I didn’t know anybody young and that was really hard,” she said. “I dreamed of having one friend or somebody that had my situation.”
After a year of searching, she found someone with young onset Parkinson’s disease. Then she met another and she decided to start a Facebook group of people in the area with the condition.
“It’s grown organically at this point. There’s 40 something people and we’ve gotten together (a handful) of times in person,” Day said. “The optimism and hope that I bring to situations is not as common as I thought and I have an opportunity to help people and I enjoy that."
Young onset Parkinson’s disease
Parkinson’s disease normally impacts people staring in their mid-to-late 60s. Young onset Parkinson’s disease refers to people diagnosed with the condition before 50.
“(It) is incredibly rare,” Beck said. “The numbers are hard to come by but thought to be certainly less than 5% of all diagnoses each year are people under the age of 50.”
There are some differences in people with young onset Parkinson’s disease.
“There seems to be a higher preponderance of those who may have a genetic mutation that can lead to Parkinson’s disease,” Beck explained.
Sometimes younger people face a delayed diagnosis. Take Day’s early symptom — shoulder pain. Often achy muscles in a 40-something is a sign of aging.
“The symptoms by themselves can make it difficult for the diagnosis. It’s a constellation of symptoms,” Beck said. “There are four key symptoms that are called cardinal symptoms that people will develop.”
The symptoms include:
- Stiffness and rigidity.
- Bradykinesia, a slowness of movement.
- Balance or gait problems.
“There are also a bunch of other symptoms that are associated with Parkinson’s that are internal to the person, what’s called non-motor symptoms. So that if you look at somebody who has Parkinson’s they may look like they’re doing great,” Beck said. “But inside they’re having lots of problems.”
- Low blood pressure, also known as orthostatic hypotension.
- Excessive sweating.
“These non-motor symptoms can be really debilitating,” he said. “The autonomic nervous system kind of goes haywire.”
People with low blood pressure can easily become dizzy and fall, for example. While others feel ashamed because they are often drenched in sweat.
“There can be embarrassment about having a Parkinson’s diagnosis,” Beck said. “There’s still a stigma about having a Parkinson’s disease diagnosis and what that means so people are reluctant to reveal it.”
There is no cure for Parkinson’s disease, but there are treatments.
“There are medications available, which really do a good job at treating the symptoms of Parkinson’s disease, at least initially,” he said. “Levodopa is the gold standard therapy for people with Parkinson’s and often people … start taking this medication (and) they feel tremendous. It sets back the clock, if you will, because they’ve been grappling with the symptoms of the disease but they haven’t had the treatment to help manage the symptoms.”
People with young onset Parkinson’s don’t develop symptoms as quickly.
“It is a debilitating disease so I don’t want to sugarcoat that, but it’s not a death sentence,” Beck said. “Being active, seeing a clinician, having medications help manage the symptoms as they change, is incredibly important. People are able to live some of their best lives as possible as a result.”
Running and hope
A few years ago, Day ran a half-marathon that took her about six hours to finish. She was wary of trying another one, but finished the virtual London marathon and thought she’d try the New York City Marathon to raise money for the Parkinson’s Foundation. She asked a few of her friends if they wanted to join her. One of her friends struggled to run or walk long distances so she focused on supporting her. Day finished in a little more than nine hours and feels proud.
“It’s been really cool,” she said. “It was really special."
She hopes her story increases awareness of young onset Parkinson’s disease.
“For a lot of people, this is maybe their first exposure to Parkinson’s disease, they have no idea it exists. Knowing what to look for is important,” she said. “There are a lot of things you can do to improve your symptoms and to make a better life for yourself or maybe even live a normal life.”