When Parkinson’s Dyskinesia Feels Embarrassing

Parkinson’s symptoms like dyskinesia — uncontrolled, involuntary muscle movement that is irregular in motion — is most often associated with long-term use of levodopa. For some, it is a mild annoyance. For others, it can interfere with daily life and lead to embarrassment or unwanted attention during everyday social activities, such as dining in public or grocery shopping. Here, we share advice to help you navigate those moments when dyskinesia emerges, so you no longer feel compelled to retreat or take yourself out of the game.

Eating and Drinking

Because dyskinesia can affect both the process of cutting food and lifting it to your mouth, it can cause self-consciousness, especially when eating with others. There are, however, ways you can take control of these situations and once again enjoy dining with others. Dave Orlowski, a PMD Alliance ambassador and person living with Parkinson’s in Mission Viejo, CA, says that having a plan when eating in public is key. “l used to love ordering spaghetti, but I don’t do that anymore when I’m eating with friends.” “I don’t order something like steak that can be tough to cut. When you have Parkinson’s, ordering something that you need two hands to cut is a recipe for disaster.”

Weighted utensils and cups designed for people with Parkinson’s can make cutting, scooping, lifting food, and sipping easier. If swallowing is a problem, along with dyskinesia, take small bites and sips and consider visiting a speech-language pathologist to learn ways to make the process easier.

Walking

Dyskinesia can cause swaying, which can be embarrassing on its own and even more so when you’re walking. Some people with dyskinesia fear others will think they’re intoxicated, and combined with other Parkinson’s symptoms such as freezing of gait, rigidity, and balance problems, walking around in public can feel too vulnerable to do.

“When I was attempting to walk with dyskinesia, my husband would say that I looked like a fish out of water flopping around,” says Michelle Lane, a Davis Phinney Foundation Ambassador.

Dave says that walking can be especially embarrassing when you feel better than you look. “Sometimes you don’t realize you’re staggering, but then someone looks at you like you’re smoking something. When you’re feeling good, and someone asks if you have Parkinson’s, it can take the wind right out of your sails.”

To overcome the challenges that come with walking while dyskinetic, try walking with poles, focus on walking so that your heels land first (which engages a part of your brain other than the one that is affected by Parkinson’s), listen to upbeat music to help you step in rhythm, and pay attention to your breathing, which reduces stress and lessens dyskinesias. Physical therapists can teach you exercises to improve balance and confidence when you walk, and regular aerobic exercise can help with leg strength and balance.

Shopping

In addition to feelings of embarrassment you may feel from altered gait and balance issues, people with Parkinson’s often report feeling self-conscious when shopping and paying for purchases. When dyskinesia causes your hands to shake when you’re searching for your wallet or handing a credit card to a store employee, you may feel that others are growing impatient or frustrated that you’re causing a delay. To avoid this, consider shopping at times when your store is the least crowded, shop during your ON times, use online or pick-up options for items that are large or heavy, use a metal wallet or steel clip to hold cash or credit cards, and take advantage of store employees who can help you deliver bags to your vehicle.

“When I’m at the grocery store, I always try to get my credit card out of my wallet ahead of time,” Dave says, “since if my hands are shaking, it’s hard to get cash out. And if I pay with cash at a fast-food restaurant or coffee shop, I usually tell them to keep the change if my hands are shaking. It’s good to make plans like this in case something comes up when you’re out.”

Getting Dressed

Because it requires both fine and gross motor skills, getting dressed can be quite tricky and stressful for people with dyskinesia. To make it less so:

  1. Choose clothes free of zippers, buttons, and laces, and shoes that you can slip on rather than lace-up.
  2. Visit an occupational therapist to learn hand exercises to make fastening clothes easier.
  3. Minimize stress by giving yourself plenty of time to get dressed and get dressed when your medications work well.

Feeling Stressed, Angry, or Happy

Many people with Parkinson’s find that exciting and emotional settings, even those that are positive and joyful, increase dyskinesia. Strong feelings of stress, anger, and happiness can trigger the release of the brain chemical norepinephrine (better known as the “fight or flight” response), increasing involuntary movement. Calming activities such as meditation, yoga, tai chi, massage, and breathing exercises do the opposite. They lessen your sympathetic nervous system’s responses to emotional situations; so, incorporate these practices into your daily life to strengthen your inner peace.

What are other ways to minimize the embarrassment associated with Parkinson’s dyskinesia?

Stay Connected

Many people with Parkinson’s who feel embarrassed by symptoms eventually begin to avoid social encounters. This defense mechanism can lead to social and emotional isolation, hopelessness, and severe depression, so it’s essential to find ways to overcome feelings of embarrassment and stay engaged and connected to others.

Try a New Therapy

Complementary therapies, such as Cognitive Behavior Therapy, aromatherapy, mindfulness practices, grounding exercises, dance therapy, and many more, can make a world of difference in your mindset, sense of self-efficacy, and overall quality of life.

Sleep Well

Like strong emotions, poor sleep habits can make dyskinesia worse, so build quality sleep hygiene techniques into your day to improve your periods of rest. Aerobic exercise can enhance the quality of sleep (and reduce stress), so be sure to get moving most days of the week.

Eat Well

Tweaks to your diet can also help you reduce the frequency of dyskinesias. Your body absorbs levodopa, a building block of protein, along with dietary protein; so, eating a protein-rich meal along with your levodopa pill means your body can’t absorb the medication as completely. Avoid significant protein sources when you take your levodopa medication to ward off dyskinesias and any accompanying embarrassing symptoms. Dr. K. gives an excellent talk on how levodopa works in the body here.

Speak Up

Talk to your wellness team about medical therapies, such as adjusting your levodopa dose or timing. You may also speak with your medical team about GOCOVRI, the only treatment FDA approved for dyskinesia. For people who qualify and are interested in surgical treatments, deep brain stimulation (DBS) may reduce your dyskinesia and improve your quality of life.

Be Your Own Best Advocate

Remember that you are your own best advocate and are well equipped to educate others about your symptoms. If you make others aware of how dyskinesia affects your movements, they will feel more at ease, and you can regain a sense of control. And, as in all aspects of life, it helps to focus on the good. “My Parkinson’s, dyskinesia, and dystonia are all part of what makes me ‘me,'” says Davis Phinney Foundation Ambassador Marty Acevedo. “I’ve learned it’s best to roll with the punches, have a healthy sense of humor, and continue to live my life well.”

Create Allies

Getting people to understand Parkinson’s isn’t easy. Stereotypes, misunderstandings, healthcare, and the media have done a good job of either misrepresenting or stigmatizing people with Parkinson’s ever since it was first recognized as a disease. As an organization, we want to change that. And while it is not your job as a person with Parkinson’s to teach everyone you interact with about Parkinson’s (how exhausting!), finding people who are open, kind, and patient and sharing your story with them is a step toward creating a more inclusive environment.

Consider this. A couple of years ago we were out on a ride with some people with Parkinson’s. Several of them were riding eBikes. A person rode up behind and said to a staff member, “I could go that fast if I was cheating too.” She said, “These people have Parkinson’s. Parkinson’s impacts balance, strength, and many other aspects of their lives. eBikes make it possible for them to get out with their friends and climb these hills. Nobody out here is cheating anything.” The rider who made the comment stood corrected and apologized. Our staff member taught him something about Parkinson’s. And based on his response, I suspect he never looked at people on eBikes the same way again.

Conversations like that can create meaningful change. So, the next time you’re in a situation where you feel frustrated because others don’t understand you, if you have the desire and energy, maybe teach them a little something. They may become an ally too.

Want More Practical Articles Like This?

Much more can be found in our Every Victory Counts® manual. It’s packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Request your free copy of the Every Victory Counts manual by clicking the button below.

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Thank you to our 2020 Peak Partners, Amneal and Kyowa Kirin, with special support from Adamas, for helping us make printing, distributing, and shipping the Every Victory Counts manual for free possible.

Thank you to our 2020 Peak Partners, Amneal and Kyowa Kirin, with special support from Adamas, for helping us make printing, distributing, and shipping the Every Victory Counts manual possible.

This post was written by the Davis Phinney Foundation.

This blog series is sponsored by Adamas Pharmaceuticals Inc.


 

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