Discovering you have Parkinson’s disease, a neurodegenerative disorder characterized by tremors and disturbances in speech and gait, is a bitter pill to swallow.
There’s a lot to take in, and it can be incredibly unsettling not only for the patient but also for their family.
But by doing some research on the disease, now more than ever, there are a number of smart strategies you can adopt to help slow down the progression of the disease, allowing you to live life to the fullest potential.
- 1. Seek out a neurologist
- 2. Find treatments that work for you
- 3. Participate in research
- 4. Move and keep moving!
- 5. Manage your mood
- 6. Seek support
- 7. Focus on your experience
1. Seek out a neurologist
Step number one: ask your primary care physician to refer you to a neurologist, preferably one who specializes in movement disorders. Patients who work with neurologists tend to have better outcomes than those who don’t, says Melita Petrossian, director of the Pacific Movement Disorders Center in Santa Monica.
But don’t just take her word for it: a study published in the journal Neurology shows that patients treated by neurologists may live longer and are less likely to end up in a nursing home or fracture their hip.
Even if you can only see the specialist once a year, it can still be helpful, says Dr. Petrossian.
2. Find treatments that work for you
Although there is currently no cure for Parkinson’s, medications can often help control symptoms. Keep in mind that Parkinson’s medications can produce significant side effects such as involuntary movements (dyskinesias). Also, it’s important to take them exactly as prescribed by your doctor to avoid side effects like freezing of gait.
Another precaution: monitor your intake of proteins and fats, as they may interfere with medication absorption.
If medications are not adequately effective, deep brain stimulation (DBS), which involves implanting electrodes in the brain, is another option, although riskier and not always advisable.
A non-invasive option is the effective Gondola AMPS therapy for treating gait disorders, such as balance problems, bradykinesia, and freezing of gait.
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3. Participate in research
Participating in clinical trials – especially those seeking treatments to slow or halt disease progression – is a direct way to contribute to finding a cure for Parkinson’s. Karl Dhana, Senior Vice President of Medical Affairs at MorseLife Healthcare System in Florida, says:
“I encourage patients to enroll in clinical trials because there is much work to be done to understand Parkinson’s disease and how to prevent it. We need to continue developing new and more effective treatments for Parkinson’s that, hopefully, will lead to a cure.”
4. Move and keep moving!
Physical exercise is another fundamental way to manage Parkinson’s. Physical therapist Brian Keenoy, who treats Parkinson’s patients at the Generation Care Rehabilitation Center in Michigan, says:
“All research shows that the earlier you start a specific exercise program for Parkinson’s, the better the long-term quality of life.”
Several exercise programs have been specially designed for people with Parkinson’s, including Rock Steady Boxing and Dance for PD. Dr. Keenoy says that dancing is a good choice for people with this disease, as it involves mindful and targeted movement that enhances brain-body connection.
Both dancing and Tai Chi, another exercise involving mindful movement, can also improve balance and reduce the risk of falls. Dr. Dhana notes that Parkinson’s and its medications lower blood pressure in patients when they stand up, leading to sometimes dizziness, which increases the risk of falling.
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5. Manage your mood
As with many illnesses, managing your mood is a fundamental part of the rehabilitation process. Dr. Keenoy encourages his patients to do something every day that brings them joy and notes that depressed patients may abandon their physical activity (even the loss of dopamine-producing cells in people with Parkinson’s affects motivation).
Additionally, depression can worsen Parkinson’s symptoms. As Dr. Dhana points out, “if someone is anxious and nervous, it can worsen tremors.”
Dr. Petrossian believes that the emotional response to Parkinson’s can sometimes be more devastating than the physical symptoms.
“The biggest problem I see is that many people with Parkinson’s have anxiety and depression, which go beyond stress, and I think they need to be addressed, sometimes with cognitive behavioral therapy and sometimes with medication.”
6. Seek support
Dr. Petrossian continues:
“Part of the problem for someone who has just been diagnosed with Parkinson’s disease is a sense of isolation and confusion, a sense of loss of identity.”
One way to counteract isolation and adapt to living with Parkinson’s is through the support of someone in your same condition. (You can find local support groups, including the PRESS program for newly diagnosed PD patients, on the American Parkinson’s Disease Association website.)
Dr. Keenoy encourages his patients to build strong social connections, stating:
“Parkinson’s disease is a neurodegenerative disorder, and if you face it alone… it can be a bit daunting. You’re not the first person to be diagnosed with Parkinson’s disease, so you don’t have to face everything alone.”
7. Focus on your experience
In addition to receiving support, thinking positively can help you accept your diagnosis. One of Dr. Petrossian’s patients started seeing Parkinson’s as a friend (calling it “Mr. P”), while others repeat mantras like: “I have Parkinson’s disease, but Parkinson’s doesn’t have me.”
Dr. Petrossian acknowledges that this approach may seem somewhat cliché, “but having a mantra that acknowledges your struggle without belittling who you are and without emphasizing the role Parkinson’s plays in your life can help you cope and become stronger.”
Conversely, one of her patients told her that having Parkinson’s “will never send a ball out of bounds” (referring to baseball rules), no matter how hard you try. At the time, Dr. Petrossian, who was taken aback by his “devastating way of thinking about life,” didn’t know how to respond.
“How do you get up every day and exercise and try to be positive every day when you constantly feel like you’re in a losing battle?”
Later, another patient gave her the answer she was looking for: if you live with Parkinson’s, “you have to understand that you have to play a different game, you have to change the rules of the game.” In other words, Dr. Petrossian says: “you have to reinvent your life.”
For his part, Dr. Keenoy firmly believes that people living with Parkinson’s can live a full life.
“I’ve seen people get confused because they’ve just received a very important diagnosis, but after giving them the tools, they realize they can adapt things so they can really enjoy their life. I believe a hundred percent of people with Parkinson’s can live a long, fruitful, and high-quality life.”
