As a movement disorder specialist, I emphasize to my patients that Parkinson’s disease is something they have power over; there are tools to use and lifestyle changes they can make on their own, and we have myriad ways to treat their symptoms. Parkinson’s can seem unpredictable when “off” periods enter the picture–times when your levodopa medication stops working and you begin experiencing symptoms again. But there’s so much that can be done to gain back that control. With the right strategies, you should be able to do everything you want to do and everything you need to do for many years to come.
1. Be upfront about your symptoms with your doctor.
With Parkinson’s, the brain cells that produce dopamine–a chemical that influences movement–start to degenerate. Less dopamine is produced, which means movement isn’t as well-controlled. Sometimes, people don’t want to acknowledge their Parkinson’s is impacting their lives. I encourage my patients to be honest with me about how their lives have changed, because there’s no reason for them to suffer or struggle. We have effective medications, behavioral changes, and physical therapies that can be very helpful, and the earlier we get started, the more control they will have over the long term. Parkinson’s can look different for everyone; it might take you longer to get dressed in the morning, or you might have trouble getting up from a chair. You might be walking more slowly, or you find your handwriting has gotten smaller, or you’re dealing with pain in your shoulder that your doctor has not found a reason for, among many other surprising symptoms. All of these, although they may not seem important, can make it harder to live your daily life, and they can be treated. Mentioning all your symptoms to your doctor is key because different therapies can address different problems. If you’re noticing your Parkinson’s medication wears off after a few hours, we have treatments to decrease “off” periods as well. Don’t chalk it up to age or a bad day; talk to your doctor so you can get it under control.
2. Stick to a schedule.
One thing that can be hard for people to get used to is being more regimented. Some of my patients are more free-spirited, but learning to keep a schedule and routine is worth the lifestyle change when it comes to managing Parkinson’s. One reason for this is due to the nature of a medication that treats the disease. Levodopa is the gold standard medication for Parkinson’s; it gets converted into dopamine to control our movements. Levodopa can reduce symptoms for a long time, but for some people, after a few years, levodopa’s effect wears away after a few hours. If someone develops these motor fluctuations, in which they experience “on” periods after taking their levodopa, followed by “off” periods where the medication’s effect decreases, they’ll likely have a specific regimen of medications to improve symptom control. And timing can make a big difference. Always take your medication as prescribed at the time you and your doctor decide is best for you. Even 15 minutes’ difference can interfere with your treatment, so do your very best to stay on schedule.
3. Pay attention to your diet.
There’s no specific diet for Parkinson’s disease; I tell my patients to eat a balanced meal with lots of fruits, vegetables, and healthy fats, choosing seafood over red meats and staying away from sugary or highly processed foods. It’s also important to time your meals wisely; some people notice that taking their medication with meals can cause the meds to not work very well or wear off early, particularly when they’ve eaten a high-protein dish. This isn’t the case for everyone, but for those affected by this phenomenon, it’s crucial to plan your breakfast, lunch, and dinner accordingly. If you have noticed you are experiencing this problem, take your levodopa either an hour before your meal or two hours after.
4. Seek out physical therapy, occupational therapy, and speech therapy.
People with Parkinson’s greatly benefit from these three therapies. As soon as we diagnose someone with Parkinson’s, we encourage them to go to physical therapy, because we want to get a baseline of their abilities. We then show them valuable exercises that can help them maintain better control over their movement, and we can guide them to find a physical activity they enjoy and can do regularly. Occupational therapy is also very important for these patients; they can learn how to use adaptive equipment if they’re having trouble with dexterity, balance, or tremors. Our occupational therapists are a great resource to help people accomplish daily tasks in easier ways, using tools not everyone is aware of. Lastly, speech therapy does more than just help with speaking; although speech therapists help improve voice volume and slurring, they’ll also perform cognitive therapy to help patients retrieve words more quickly and multitask, as well as techniques to help with swallowing, if this has become a concern.
5. Exercise, exercise, exercise.
The value of exercise cannot be overemphasized for people with Parkinson’s. I encourage my patients to dedicate a period of time during their day, every day, for physical activity. There is so much research showing that moderately strenuous exercise, at least 150 hours per week, makes a real difference in the long-term prognosis of our patients. At our movement disorders center, we’ve created a gym and workout area where we offer free exercise classes to our patients, including yoga, Tai chi, dance, boxing, and others. We are even looking into providing ping pong for Parkinson’s! All these activities can bring more control and predictability to people with Parkinson’s; I’m thrilled to be able to offer this resource to patients because it gives them a place to exercise where they feel comfortable and supported. If you have Parkinson’s, especially if it’s more advanced, you may not feel comfortable attending a yoga class with the general public; you might have a tremor or not be able to hold the poses. That’s why it’s gratifying to be able to remove obstacles to exercise for my patients. Look for a similar center in your area, or find an exercise class you feel safe and supported in, and attend regularly.
6. Take care of your mental health.
Depression is common in people with Parkinson’s, and it isn’t just a reaction to your diagnosis. Studies show people with Parkinson’s are more likely to be depressed than people with terminal illness. With Parkinson’s, a chemical imbalance occurs due to the neurodegeneration of certain brain cells, leading to depression. Depression can make it harder to make healthy choices for yourself and adhere to your treatment regimen, leading to poor control over your Parkinson’s and a significantly reduced quality of life. If you’re feeling symptoms of depression, like long-lasting feelings of sadness or loss of interest in activities you used to enjoy, don’t delay talking to your doctor about it. Talk therapy may help you process your diagnosis and the accompanying changes to your life, and medication can help as well. Another important way to boost mental health? Social engagement and activities. Isolation is a common contributor to depression in people with Parkinson’s. Group exercise classes can be one way to stay involved in your community and meet people in similar situations. Parkinson’s patient support groups are another great opportunity to connect with others and fill your social needs. Lean on family and friends for support, and try not to let important relationships fade.
A diagnosis of Parkinson’s can be a scary thing to receive–but I want patients to know there is a lot they can do to gain more control and improve their lives. Be open with your doctor and take advantage of the resources available to you and their tips for living with Parkinson’s disease. With the right tools, support, and education, you should be able to do everything you want to do for a very long time.
