- Up to 50% of people with Parkinson’s disease will experience depression and up to 40% will experience anxiety.
- Despite the prevalence of mental health conditions in those living with Parkinson’s, only 2% receive referrals to mental health professionals.
- Prioritizing mental health is as important as physical health for those who are living with Parkinson’s disease.
When Vikas Chinnan learned he had
“I could explain the depression and apathy I was experiencing and have some hope with combating those things with medicine and exercise and diet,” he told Healthline.
A few years prior to his diagnosis, Chinnan began experiencing physical symptoms characteristic of Parkinson’s disease, including prolonged stiffness and pain in his legs that made it difficult to walk.
Aside from physical symptoms, the diagnosis explained the cognitive impairment and mental health symptoms he was experiencing in the years leading up to 2022.
“[I] wasn’t being as articulate as I was in the past…and there was a level of depression and withdrawal and a lot of that I attributed to the mobility challenges I was having,” Chinnan said.
For instance, he stopped going to lunch with colleagues because he feared he wouldn’t be able to keep up with them for the two-block walk. He also withdrew from social activities outside of work.
“When my wife would ask me if I wanted to have friends over, I used to say, ‘Absolutely. Who should we have over?’ but my response became, ‘If you want to I’m fine with it, but I’m indifferent,’” said Chinnan.
He attributed his feelings of depression and withdrawal to the tiredness of dealing with the physical symptoms he was experiencing, not knowing what was causing them, and to the many visits to doctors and physical therapists in hopes of finding relief.
While he started seeing a therapist about a year before his diagnosis, it wasn’t until he was diagnosed with Parkinson’s disease that he learned about the disease’s connection to apathy (feeling indifferent or lacking interest) and mental health conditions like anxiety and depression.
According to the Parkinson’s Foundation, up to 50% of people with Parkinson’s will experience depression, up to 40% will experience anxiety, and about 40% will experience apathy.
The Parkinson’s Foundation states that mental health challenges are not simply a reaction to a Parkinson’s diagnosis, but rather part of the disease itself, caused by changes in brain chemistry.
Naomi Torres-Mackie, PhD, clinical psychologist at Lenox Hill Hospital, said this makes sense given the neurotransmitters that are implicated in Parkinson’s disease, depressive disorders, and anxiety disorders.
“Each has a common origin, which is where comorbidities of [Parkinson’s], depression, and anxiety stem from. It is understood that as dopaminergic pathways degenerate, an imbalance between acetylcholine and dopamine lead to Parkinson’s disease,” Torres-Mackie told Healthline.
The involuntary movements that are distinctive to Parkinson’s are typically a result of low levels of dopamine in the brain, she added.
“This neurotransmitter has an important role in not just movement and coordination but also mood. Low levels of dopamine are also present in patients with depressive and anxious disorders. So, as dopamine levels decrease, an individual may experience depressive and/or anxious symptoms ahead of or alongside of a Parkinson’s diagnosis,” said Torres-Mackie.
In fact, she noted that depression, anxiety, or apathy are often the earliest signs of the disease, with mood symptoms appearing earlier than other Parkinson’s symptoms.
“More specifically, we know from research that some individuals experience anxiety or depression 2 to 5 years before receiving a diagnosis of Parkinson’s disease,” she said.
However, data from the Parkinson’s Foundation Parkinson’s Outcomes Project showed only a 2% referral rate to mental health professionals, as well as potential underdiagnosis and undertreatment of anxiety and depression in those living with Parkinson’s.
Elena Godfrey, licensed clinical social worker for the Parkinson’s Foundation, said that historically, good Parkinson’s care meant the best possible management of movement symptoms.
“Fortunately, people living with Parkinson’s have added their voices to the conversation and are re-defining what it means to get good Parkinson’s care,” she told Healthline. “We now know that the non-movement symptoms of Parkinson’s have the greatest impact on a person’s quality of life, so good Parkinson’s care has to include assessing, talking about and addressing the non-movement symptoms, and overall well-being.”
All of the facets of Parkinson’s should be considered by providers, as well as family and friends of those living with the disease, said Torres-Mackie.
“Understanding the mental health ramifications of [Parkinson’s] can go a long way in increasing the ability of those with a [Parkinson’s] diagnosis to lead full, satisfying lives,” she said.
Two weeks before Chinnan was diagnosed with Parkinson’s, he began taking anti-depressants under the supervision of his therapist.
“Between the anti-depressants, answer of a diagnosis, and Parkinson’s meds, I was in a much better place post-diagnosis than I was before diagnosis,” he said.
Caring for his mental health requires as much attention as caring for his physical health.
“Mental health is a constant battle and it’s really easy with Parkinson’s to let your world close in on you. There’s peril around every corner, there’s places you can fall or trip, urinary frequency and urgency issues that cause you to be concerned about being out on a subway or at a concert. There’s off periods where you feel like you might need extra help when the meds aren’t working so well,” Chinnan said.
He continues to see a therapist on a regular basis to help him cope.
He also turns to the following five key strategies to manage his physical and mental symptoms on his own.
- Compliance with medication prescribed to him
- Eating a healthy diet
- Engaging in exercise, such as biking and Rock Steady Boxing
- Prioritizing good sleep hygiene
- Practicing stress reduction
Additionally, he finds comfort in speaking out for others living Parkinson’s disease.
“In my case, bringing people into my world was my way of battling that world closing in. I launched into a campaign to let people know what I was dealing with,” Chinnan said.
A representative from the Parkinson’s Foundation visited one of his boxing classes to talk about a fundraiser. Chinnan felt participating was an opportunity to share his diagnosis with family and friends.
“I started building a network of support and people wishing me well and this helped my world not close in and those in my circle began checking in on me and asking me to get out of the house and meet up and get fresh air and that’s been great for my mental well-being,” he said.
He wanted to pay forward the support he received to others, so he shifted from working as an executive at a software technology company to working in outreach in the Parkinson’s community.
“[It] seems everyone has experienced prior to diagnosis or after, a level of depression and if you’re on the other side of that, which I like to think I am, you feel this sense of desire and urgency to help other people get there and help them through the low periods,” said Chinnan.
Godfrey said people can live mentally well with Parkinson’s disease, but it takes effort.
“We rarely drift toward mental and emotional health; it’s something we have to be intentional about, and living well with a progressive and chronic illness requires strong coping skills and prioritization and self-care,” she said.
Foundational concepts of self-care like getting quality sleep, eating healthy, exercising, and reducing stress are all important, as is staying socially active.
“It’s so important to engage in the thoughts and activities that bring meaning and purpose to your life. With Parkinson’s your energy is less and things take longer so recognize that both of those resources (time and energy) are precious, and spend them on people and activities that matter the most to you,” she said.
If you’re taking medication for mental health conditions, seeking care from a psychiatrist who understands Parkinson’s or is able to collaborate with your neurologist is best, added Godfrey.
Additionally, turning to the following resources provided by the Parkinson’s Foundation can provide additional support:
- The Parkinson’s Foundation website includes Expert Briefings, podcasts, fact sheets, videos, webinars, and more on the topic of mental health.
- The Parkinson’s Foundation Helpline (1-800-473-4636) welcomes calls from people with Parkinson’s disease, their families, friends, and healthcare providers, and offers information on all aspects of Parkinson’s disease, including referrals to healthcare professionals and community resources for social support.
- PD Conversations is a place to connect with others living with the disease.
“[There are many] ways you can focus on your own mental health and well-being and the more options you have and the more resources you consider, the better chance you have to figure out what works for you,” said Godfrey.