Swallowing problems, known as dysphagia, can, for some people, be a symptom of Parkinson’s disease (PD). If swallowing problems become difficult and impact your ability to manage saliva, eat or drink, a licensed speech and swallowing therapist, also known as a speech-language pathologist, can diagnose and treat the condition to ensure you or your loved one can eat and enjoy meals with safety and confidence.
To learn how, Rachel Dolhun, MD, DipABLM, The Michael J. Fox Foundation’s (MJFF) on-staff movement disorder specialist and lifestyle medicine physician, spoke with speech and swallowing expert Jessica Galgano, PhD, CCC-SLP. Jessica is a faculty instructor of LSVT LOUD, an evidence-based speech therapy program for Parkinson’s; faculty instructor in the department of rehabilitation at NYU Grossman School of Medicine; and founder and CEO of Open Lines Speech and Communication in New York City and Los Angeles, California.
The conversation, edited and condensed for clarity, follows.
Who gets swallowing symptoms with Parkinson’s?
Not everyone. Whereas nearly nine of every 10 individuals with Parkinson’s will experience changes to their voice and speech, fewer experience swallowing difficulties. It’s also important to note that swallowing changes don’t necessarily accompany speech changes. Since we swallow all day long, (hundreds or thousands of times each day!) this ability might naturally stay stronger for a longer period. However, the number of times a person swallows each day can decrease when one has Parkinson’s, and the longer a person lives with Parkinson’s, the more likely swallowing problems may arise.
Why do these changes happen in Parkinson’s?
Parkinson’s affects brain cells that play a role in the strength and coordination of swallowing muscles. In the same way body movements slow down with Parkinson’s, so do movements of the mouth and throat. But there are other factors that play a role, too. Mood, for example, can affect hunger. Feeling nervous can impact how we swallow. Fatigue — feeling tired, down, or low energy — can lead to smaller, slower movements. And posture, which is so important when eating, might change with Parkinson’s and affect our ability to swallow. To compensate, we can try to think big, sit and stand tall or lean back.
There are potential reasons for swallowing changes outside of Parkinson’s, too, like allergies or diet components, namely dairy. In some people, these factors can increase mucous and make secretions more difficult to swallow. Your doctor, speech and swallowing pathologist, and dietitian can help you evaluate and adjust for these factors.
Can we limit or prevent swallowing changes?
In some ways, yes. Start with being mindful, or simply being aware. Check your mood when you wake up and throughout the day. Think to yourself, Am I feeling good? Do I have kind, supportive people around me? Have I had enough water today? Have I eaten enough good food? As you eat, think, how am I putting food on my fork? How quickly or slowly am I eating? Am I having trouble chewing? Am I sitting up straight? Do I have any food particles left in my mouth after I eat? Should I brush my teeth to make sure there is nothing stuck in my teeth that could give me a problem later in the day or when I lie down?
To strengthen and coordinate swallowing, there are exercises that everyone, whether living with Parkinson’s or not, can benefit from:
- Masako maneuver, or tongue-hold maneuver — hold your tongue between your teeth and swallow; do this 10 times throughout the day; it’s easy to do anywhere, anytime. Keep in mind that you may want to take a break after two or three swallows. It can be challenging for anyone to swallow so many times in a row!
- Shaker technique — this exercise is not for people with neck or back pain, arthritis, or other issues. Lying face up, lift head to look at toes while keeping shoulders on the ground. Hold for 60 seconds; Rest briefly and repeat three times.
Talk with your personal providers to ensure you can do these exercises safely and correctly.
What’s the treatment for swallowing problems?
Parkinson’s medication may help somewhat, especially if swallowing problems tend to happen more frequently when medication wears off. But often, medication alone isn’t enough. This is where speech and swallowing therapy comes in. A licensed speech-language pathologist can take you through a comprehensive evaluation to determine the nature of your swallowing difficulties and design a treatment plan that may include a combination of strengthening exercises, postural and behavioral modifications, and compensatory strategies to support the safety and efficiency of your swallow.
When should you see a speech and swallowing therapist?
It’s never too early and never a bad idea. Even therapy directed to speech and voice, which focuses on making big, mindful movements, can help swallowing. (The gold-standard speech therapy program for people with Parkinson’s is LSVT LOUD.)
Consider seeing a specialist for swallowing if you notice any of the following during or after eating or drinking:
- Shortness of breath
- Clearing your throat
- Wet or gurgly vocal quality
- Low grade fevers
- Frequent respiratory infections
You also might want to get checked out if you simply don’t feel like eating as much or you’re losing weight. This could happen for many reasons — depression or anxiety, stress, or loss of smell. Some find they avoid eating because it becomes harder or uncomfortable. If you have pain, it can take a lot of effort to chew, or eating may feel too hard and time consuming if you must repeatedly swallow small bites. If you notice these symptoms, there’s no need to panic, but it is important that they be addressed as soon as possible. There may be simple “fixes,” like drinking a little more or drinking carbonated liquids, changing bite size, or making other small adjustments, like pushing down with the fork or spoon onto your tongue so it is easier to manage and swallow food.
To find a speech and swallowing therapist, ask your doctor for a referral, learn about others’ experiences, and search online for a provider in your area. Speech and swallowing therapists or pathologists who are certified in LSVT LOUD and specialize in regularly evaluating and treating people with Parkinson’s are a great place to start.
How can a speech therapist help?
A good therapist starts by listening to you, spending time with you, looking at the big picture, and considering the whole person. Swallowing isn’t just about how you put food in your mouth or chew. Swallowing plays a role in every aspect of daily life. It involves more than what types or consistencies of foods you have trouble tolerating or what items make you cough. It also involves what you like to eat, with whom you eat, how fast you eat and digest, distractions present at meals, mood, fatigue level, timing of food intake during the day, allergies, medication timing and much more.
Based on your personal preferences, your symptoms and how they impact you and your goals, we develop a treatment plan of exercises, diet changes (if needed), and other techniques to strengthen and support swallowing.
Diet changes for swallowing? What might that include?
Often, therapists will recommend a modified diet to treat swallowing changes. This simply means eating foods or drinking liquids of specific consistencies in specific ways for safer swallowing.
We might, for example, recommend drinking thickened liquids. This can be helpful for people who have a delayed swallowing reflex — for them, thin liquids, like water, get to the back of throat before the swallowing reflex that protects the airway is triggered. This can lead to coughing or liquids going “down the wrong tube.” Thickened liquids also can be helpful for people who have trouble moving food from the front to the back of the mouth. (A speech-language pathologist uses imaging tools and other tests to help determine what specific aspects of your swallow mechanism may be contributing to your swallowing troubles.)
To thicken liquids, you can add store-bought thickener or pre-thickened waters and juices. You also can also blend your own using natural thickeners, like protein powder, ground flaxseed, and other natural thickeners that also add nutritional benefit, like fiber. Not only do these aid health and digestion, but they can normalize the need to thicken liquids. It’s like you’re blending your own smoothie, which others can enjoy too, rather than needing specific supplies or feeling isolated during snack or mealtimes.
What else might help?
A few things to remember if you have swallowing problems or need a modified diet:
- Consistency, taste and temperature can help stimulate swallowing. More flavorful, carbonated or cool beverages increase sensation to trigger and increase the force of swallowing.
- Stay hydrated. Thickening liquids doesn’t mean cutting out water, which is so important for body, brain and dental health. It is important to drink water during safe, specific times, like outside of meals. Discuss the Frazier Free Water protocol with your swallowing specialist and doctor. Many people are candidates for this method, which helps people who need thickened liquids continue to safely drink regular water. Regularly cleaning your mouth and specific timing of water drinking are key to the success of this protocol.
- Straws can help or harm. It depends on the individual. For some, a straw can help control the amount of fluid in each sip. Talk with your therapist about what’s best for you and always take small sips and sit upright.
Do you use tools or technologies to treat swallowing?
Absolutely. Your therapist may not need to use any tools or technologies, or they may choose to use one or more, depending on your symptoms and circumstance. A few examples include:
- VAST (Video Assisted Swallowing Therapy): using a tube and camera in the nose, this provides real-time, visual feedback on swallowing. Your therapist can show what’s happening and how exercises and techniques help. This is not available everywhere and isn’t necessarily for everyone.
- EMST (Expiratory Muscle Strength Training): a handheld medical device (EMST 150 or The Speech Breather Respiratory Trainer) that strengthens cough and breath by having you exhale forcefully against pressure. Lite versions and inspiratory adaptors are also available to exercise and improve inhalation. The lungs and breath are important for keeping your cough strong enough to clear anything that goes “down the wrong pipe.” Your therapist will work with your doctors to make sure this is safe for your heart and lungs, recommend which device to use and at what pressure setting, and teach you how and when to use.
- Education: look at pictures and diagrams, videos and even your own swallow study to learn about a typical swallow pattern and how yours may be different. Ask questions to understand why your therapist recommends diet changes, techniques, or other exercises and modifications.
Editor’s note: MJFF funded early work on EMST for swallowing in Parkinson’s and is now funding research to evaluate a wireless, wearable device to ease swallowing changes.
How well can we treat speech and swallowing problems?
Very well! But optimal treatment depends on a few things: you, your speech and swallowing therapist and the approach. You must stay engaged and do the exercises regularly. Your therapist should have a strong understanding of the recommended techniques, administer and teach them correctly, and know how to optimally adapt an exercise or technique for each person. Any approach must be scientifically proven, intense, consistent, and a fit for you and your lifestyle. Your therapist should also be a bit of a coach — helping you set goals, work toward them and explore obstacles that may be getting in the way of or boosting your progress.
What about when swallowing changes progress?
For some individuals who have lived with Parkinson’s for multiple decades, swallowing changes may progress. This doesn’t happen with everyone. If it does, work closely with your loved ones, speech and swallowing therapist, and doctor to preserve swallowing strength and manage symptoms as well as possible. In some cases, this might mean adopting specific body or head positioning when eating or using devices to suction secretions or saliva that are difficult to swallow. In others, it may mean considering a feeding tube and pairing it with food and liquid for enjoyment for adequate nutrition and hydration.
No one wants to think about these possibilities, but it’s important to be aware of them and to discuss them often so that your loved ones and care team can support you in your journey in whatever way is most valuable and meaningful to you.
And all of us, whether Parkinson’s is part of our lives or not, can learn life-saving skills, like the Heimlich maneuver for choking and CPR. Hopefully you’ll never need them, but these tools can make you feel more capable and empowered. You’ll know what to look for and how to help in an emergency.
Anything else to add?
Mindfulness-based approaches, including meditation, tai chi, and other similar exercises and practices, can be a good addition to any swallowing treatment plan. They might not have a direct effect on swallowing, but they can have a huge impact on how you feel. Mindfulness can help regulate mood and relax your body and brain to help you function — and therefore swallow — better.
For more on swallowing and Parkinson’s, visit the MJFF website, or watch a webinar.