Liz Day, then 41, suffered from shoulder and neck pain for months.
When physical therapy failed to relieve her pain, she saw a doctor and learned that early-onset Parkinson’s disease was the cause.
Six years later, Liz recently ran the New York City Marathon hoping to change the conversation about Parkinson’s disease, which is onset in young people.
“I would like to influence doctors and healthcare providers to talk differently about the disease and not say, ‘Something is really wrong with you’ or ‘This is a really terrible disease and I don’t want to give you a diagnosis because it’s bad or is degenerative or incurable, ‘”the now 48-year-old from Brooklyn told TODAY.
“We know that people’s attitudes make a difference and that stress makes symptoms worse, so talking about it like that is (not) helpful.”
In 2015, Liz thought that texting too much in bed was causing her neck and shoulder pain. But after five months of physical therapy, she was no better.
“They said I should just see a neurologist and I was completely shocked. I thought, ‘The neurologist, why?’ ”She explained.
“I thought I was the healthiest person in the world and was very proud of myself for not taking any medication.
You know that there is really something wrong with you
She visited a doctor who recommended an MRI and blood tests. While everything came back to normal, the doctor wanted to chat with her.
“I was like, ‘Why should I go in and talk to you if the tests were normal?'” She said. “I got there and he said, ‘You know there’s really something wrong with you, don’t you?’ And I thought: ‘No, what are you talking about?’ “
He said she might have some kind of stiff person syndrome but was reluctant to diagnose it.
“He said, ‘I couldn’t really tell what it is. It doesn’t have the feel of idiopathic Parkinson’s. But that’s the only thing with the test results, ‘”she recalls.
“He basically started crying and was like, ‘You have a nine 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 Liz had Parkinson’s disease.
“The doctor was almost joking about my symptoms, he was like, ‘Wow, you’re really slow,'” she said.
“At that point, I was really under stress, which made things worse … I went really downhill right after the diagnosis, probably because of the stress.”
Doctors wanted her to take dopamine agonists to treat some of the symptoms, but she wasn’t sure.
“I wasn’t quite ready for that,” she said. “I immediately changed my diet. I started training straight away. “
Sports and Parkinson’s
Exercise can help people with Parkinson’s, said James Beck, research director for the Parkinson’s Foundation.
“It’s not a panacea, but it works wonders in treating symptoms, keeping people moving, which is really important, and helping maintain muscle strength,” he told TODAY.
“It’s a rising tide that drives all boats up … helping people live better lives.”
Liz eventually started taking medication and her symptoms subsided. But it was tough being so young and having a disease that is often associated with the elderly.
“I didn’t know anyone who was young and that was really tough,” she said. “I dreamed of having a friend or someone who had my situation.”
After a year of searching, she found someone with childhood Parkinson’s disease. Then she met someone else and decided to start a Facebook group of people in the area with the condition.
“At that point it was growing organically. There are 40 people and we met in person (a couple of times), ”said Liz. “The optimism and hope that I bring into situations are not as common as I thought, and I have the opportunity to help people and I enjoy that.”
Parkinson’s disease usually affects people between their mid and late 60s. Parkinson’s disease at a young age refers to people who have the condition before age 50.
“(It) is incredibly rare,” said Beck. “The numbers are difficult to come by, but it is believed that less than 5% of all diagnoses are made in people under the age of 50 each year.”
There are some differences in people with Parkinson’s disease young.
“There seems to be a greater preponderance of those who may have a genetic mutation that can lead to Parkinson’s disease,” said Beck.
Sometimes younger people have a delayed diagnosis. Take Liz’s early symptom – shoulder pain. Sore muscles in a 40-year-old are often a sign of aging.
“Symptoms alone can make diagnosis difficult. It’s a constellation of symptoms, ”said Beck. “There are four key symptoms called cardinal symptoms that people will develop.”
- Stiffness and stiffness.
- Bradykinesia, a slowness of movement.
- Balance or gait problems.
“There are also a number of other symptoms associated with Parkinson’s that are internal to the person called non-motor symptoms. So when you look at someone who has Parkinson’s, it looks like they’re fine, ”Beck said. “But inside they have a lot of problems.”
- Low blood pressure, also known as orthostatic hypotension.
- Heavy sweating.
“These non-motor symptoms can be really debilitating,” he said. “The autonomic nervous system is kind of messed up.”
For example, people with low blood pressure can get dizzy and fall easily. While others are ashamed because they are often drenched in sweat.
“It can be embarrassing to be diagnosed with Parkinson’s,” Beck said. “There’s still a stigma about being diagnosed with Parkinson’s and what that means, so people are reluctant to reveal it.”
There is no cure for Parkinson’s disease, but treatments are available.
People with early-stage Parkinson’s disease don’t develop symptoms as quickly.
“It’s a debilitating disease, so I don’t want to gloss over it, but it’s not a death sentence,” Beck said.
“It’s incredibly important to be active, see a doctor, and take medication that will help manage symptoms as they change. This enables people to lead the best possible life. “
A few years ago, Liz ran a half marathon that took about six hours. She was cautious about trying another one but finished the virtual London marathon thinking she was going to try the New York City marathon to raise funds for the Parkinson’s Foundation.
She asked some of her friends if they would like to come with me. One of her friends was struggling to run or walk long distances so she focused on helping her. Liz is done in just over nine hours and feels proud.
“It was really cool,” she said. “It was really special.”
She hopes her story will raise awareness of Parkinson’s disease, which is onset in young people.
“For many people this may be the first time they have been exposed to Parkinson’s disease, they have no idea that it exists. It’s important to know what to look for, ”she said.
“There are many things you can do to improve your symptoms and enable yourself a better life, or perhaps even lead a normal life.”