Living with Parkinson’s disease (PD) sometimes means finding workarounds, or “hacks,” that can help make life a little easier and improve your quality of life. The idea of hacks is not necessarily about preventing symptoms, but in learning how to manage them better. If you live with PD, finding different tips that help you manage PD symptoms empowers you to exert some control over how the condition affects you.
You don’t have to go far to learn how others living with PD manage their symptoms. Besides advice from health care professionals, information from the MyParkinsonsTeam community can give you firsthand insight into how people who understand what you’re going through manage the tough parts. Check out a few tips that can help you better manage your PD symptoms.
If you have PD and you’re experiencing sleep problems, you’re not alone. Feeling tired during the day and having trouble sleeping at night may affect you, and you might also have jerky movements or vivid dreams that make you talk or yell in your sleep. While a health care professional is best suited to talk about medical treatments for sleep issues, there are some at-home tips you might consider trying to sleep better.
One method for sleeping better at night is by practicing sleep “hygiene.” (The term is just another way of describing a healthy bedtime routine.) That may include:
One idea that may be particularly helpful for people with PD is to be mindful of the material of your sheets and pajamas, with your goal being fabric that makes moving in bed easier. Silk or satin sheets and pajamas that glide over each other can save you muscle energy and might make unwanted, jerky movements feel more fluid.
Among MyParkinsonsTeam members, there is no shortage of discussion on tips and tricks to address sleep problems. One member said, “Sleep with a pillow in your arms and hug it. It keeps the hand muscles active and gives you peace.” Another wrote, “I've been sleeping under a weighted blanket. Boy, does it help with the tremors and to fall asleep.” Several members mentioned consuming herbal tea before bedtime, while others suggested trying CBD oil for relaxation.
Movement can help you manage stiffness, and that can come in the form of stretching, exercise, weight lifting, and other moves. Exercise for PD is likely not news to you. But trying to find exercises you enjoy and that keep you engaged can be challenging. When looking for exercises, keep the following options in mind:
The key is to keep it interesting so you stay motivated. Dancing and boxing are two examples that combine all of the above-listed aspects. And, according to the Parkinson’s Foundation, dance classes and boxing groups designed for people living with PD are popping up across the country.
It’s important to consider your current level of fitness before trying a new exercise. If you don’t exercise very often, simply getting more steps in can be a great way to start ramping up. Be aware of how your body feels when exercising and listen to it.
When asked how much exercise is too much exercise, one MyParkinsonsTeam member said, “Pace yourself … the key is consistency.” Another member talked about finding the right balance this way: “If you do too much and are exhausted or in pain, the next day, rest. If you are consistently too tired, then cut back. Usually exercise should give energy, not destroy it. Doing nothing just zaps energy completely.”
PD can affect nerves and muscles that are necessary for clear, easy speech. Voice problems are common among people living with PD and can make communication difficult and laborious as the disease progresses. You might have a soft, breathy, and strained voice that gets thinner as the day goes on, or even as you speak. This may mean people have a hard time understanding you, which can be frustrating.
Just as communication is key to social relationships, so is feeling heard. In addition to meeting with a speech therapist or speech pathologist, there are other ways you can improve your ability to communicate.
For example, try to meet people in quiet spaces to have conversations. And make sure whoever is listening to you can see your face (this helps them match the visual with the audible). While it may seem awkward at first, speak in short phrases so that you aren’t trying to say a lot in one breath. And, as strange as it may be to schedule vocal rest, doing so before you know you will speak with someone—such as on the phone—can make your side of the conversation flow more easily.
You might also consider practicing vocal exercises. “I have been doing music therapy and vocal exercises,” one MyParkinsonsTeam member wrote. “Even doing just a few —even just singing karaoke — can help keep the muscles going!”
If you are the one listening to someone with PD speak, practice patience. “I lose words and lose my train of thought,” another member wrote. “When I talk with a person who waits on me, it always stuns me. I love anyone who does that.”
Dyskinesia is a common side effect of some medications used to treat PD. The resulting jerky, involuntary movements may be mild or severe, and can impact daily life. But you will probably find that being on the medication and having dyskinesia is better than being off the medication.
Since dyskinesia is a symptom of PD medication, talking to your health care professional is the best option for figuring out clinical ways to manage it. However, there are some things you can do on your own.
For example, tracking the time and frequency of your dyskinesia can help you and your health care team know if the medication is working. Logging those moments will also tell you the times when movement is easier (and less jerky), which you can use to your advantage. You can enlist your caregiver or a family member to help you keep track.
Once you’re aware of the times of day when you experience fewer dyskinesia episodes, you can schedule activities around those periods. Physical activity might even help you deal with dyskinesia. One MyParkinsonsTeam member put it this way: “Exercise helps me when my body is ‘doing the dyskinesia dance.’”
Whether you exercise to go with the flow of dyskinesia or only exercise during those in-between times, movement can build and maintain your strength, which may reduce overall exhaustion from dyskinesia.
These lifestyle tips may seem small, but when it comes to living with PD, finding the little things that work can add up. On MyParkinsonsTeam, the social network for people with Parkinson’s disease and their loved ones, more than 81,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.
Do you have any life hacks that make living with Parkinson’s disease more manageable? Share your experience in the comments below, or start a conversation by posting on your Activities page.