Colleen Bridges, M. Ed, NSCA-CPT;
Renee Rouleau-B.S., PhD student, Jacobs School of Biomedical Sciences, University at Buffalo;
Kristi Ramsey, OTD, OTR/L.
“On the count of three say, 'CHEESE’!” The family reunion is captured with a photograph, but grandma (who has Parkinson’s Disease) is not smiling. As a matter of fact, if you didn’t know her you would think she was upset or completely disinterested in the moment. Later, while eating together, the family notices that grandma is drooling while eating and coughing after the meal. When asked if she is ok, her voice is barely above a whisper AND she mumbles, making it difficult to determine if she needs assistance.
What happened to the once smiling, chatty, and boisterous grandma, who was always ready for a fun experience with her family?
Her limited facial expression, trouble with swallowing, and decreased voice volume (hypophonia) are all consequences of the “dark side” of PD.
Parkinson’s Disease is most often characterized by a tremor and/or gait issues. Just as the moon has a dark side, unseen but present, Parkinson’s Disease has a “dark side”, unseen but very present.. As a fitness professional, understanding the “dark side” of Parkinson’s Disease and how it affects your “fighters'' will enhance your program design skills, increase your confidence in counseling a “fighter” or care-partner and help build your relationship with other medical and fitness professionals.
The goal of this article series is to shed light on the “dark side” of PD, in the case of this article facial masking, swallowing, vocal issues. By incorporating the knowledge of medical professionals on my “Bridges For Parkinson’s” team, you will learn about research discoveries, resources for program design, useful tools for “fighters” and care-partners and ultimately, hope!
Let’s begin with the Face.
FACIAL MASKING (also known as Hypomimia)
Did you know you have 43 muscles in the face alone? According to the Cleveland Clinic, the craniofacial muscles are “flat muscles that attach to various places on your skull. The craniofacial muscles are essential to chewing and making facial expressions. They originate from bone or fascia and insert into your skin. Craniofacial muscles work together to control movements in your:
Cheeks.
Chin.
Ears (only in some people).
Eyebrows.
Eyelids.
Forehead.
Lips (upper and lower).
Nose and nostrils.
Facial muscles are also involved in your unique features, talking, singing, whistling, holding food in the mouth and protecting your eyes.”
Did you know Facial Masking can be categorized into 5 levels? Medical News Today, lists the degrees of facial masking as the following.
0: normal expression and function
1 : slight symptoms
2: noticeable loss of facial movement
3: moderate loss of facial movement, present most of the time
4: more severe loss of facial movement or immobilization of the face that is mostly present
NOTE: research findings show that facial masking is less noticeable during positive interactions while negative interactions produce increased facial masking.
As a fitness professional, ask yourself, if dopamine controls muscle movement, how does lack of dopamine impact those 43 facial muscles?
For people living with PD those muscles are affected, resulting in potential for reduced blinking, lack of eyebrow movement and decreased happy and sad expressions. This can lead those who are unfamiliar with these symptoms to think an individual with PD is upset or apathetic. This couldn't be further from the truth! They care, but often have no awareness that they are not expressing themselves. They may be unable to communicate effectively while also expressing emotion.
In fact, people suffering from facial masking, hypophonia (low voice volume), and dysphagia (swallowing issues) say the most frustrating part of this experience is isolation. The risk of choking, drooling, or needing to constantly repeat a phrase due to low voice volume is not only exhausting, but may leave them feeling depressed.
ROLE OF DOPAMINE IN THE FACE
Parkinson’s Disease (PD) is primarily due to the neurodegeneration of dopamine neurons in the substantia nigra, projecting onto the striatum and basal ganglia, which are major movement centers of the brain. These areas act directly on primary motor areas in the cortex to modulate, fine-tune movement and control fast and slow twitch muscles, including facial muscles. However, with the death of dopamine neurons, this signaling tapers off and we see less movement control, often in the form of facial bradykinesia. This can contribute to the effect known as hypomimia, or facial masking, which is thought to be an early sign of PD.
There is no evidence of specific dopaminergic projections that contribute to lack of facial movement currently. However, current research is focused on how lack of dopamine globally triggers facial masking and apathy, especially in early disease states.
Hypomimia, Dysarthria and Tachyphemia (speech) can be debilitating both physiologically and emotionally/socially. Physiologically, having less orofacial movement can impact everyday tasks such as chewing food and swallowing, as there is slower signaling from the basal ganglia modulating motor areas and motor neurons in the muscles (Ricciardi et al., 2020). Socially, facial masking can contribute to a lack of emotional expression and emotional recognition, making it more challenging to interact with loved ones through body language, a discounted but integral part of communication (Wootton et al., 2019).
The addition of dopamine dictates a more robust orofacial response, as often indicated by patients taking dopaminergic medications. A study published in 2020 states that hypomimia was often attenuated by administration of levodopa, hypothesizing that dopamine is involved with voluntary facial expression and emotional recognition (Ricciardi et al., 2020). We could extrapolate this onto other orofacial movements such as swallowing, indicating that these reflexes and severity of hypomimia could come from the decreased dopamine supply. Lack of dopamine affects certain areas of the brain specifically associated with facial expression such as the primary motor cortex and the supplementary motor area, where pathways from the striatum to the cortex project (Makinen et al., 2019). Knowing that the addition of dopamine can help not only with emotional expression but orofacial movements in general may help guide treatment of these debilitating effects, and exercising facial muscles may provide more ease of action when paired with dopamine.
THERAPEUTICS- Medicine and Exercise
Thanks to modern medicine and complementary therapies, addressing facial masking with positive results is possible. Carbidopa-Levadopa is the most prescribed medication for people living with PD. Levodopa enters the brain and helps replace the missing dopamine, which permits people to function better. By increasing the amount of dopamine in the brain, levodopa helps control symptoms and helps you to utilize the facial muscles as well as perform activities of daily living with greater ease.
Physicians may also prescribe dopamine agonists, MAO-Inhibitors and/or COMT- Inhibitors to work with Carbidopa-Levadopa. These medications increase dopamine or additional chemicals in the brain which improves the person's ability to express emotion and communicate. When combined with exercise, people living with Parkinson’s Disease experience profound improvements.
RESEARCH
Complementary therapies such as LSVT LOUD, “Let’s FACE It Together”, and Speech Therapy have been proven to support dopamine replacement therapy. For example;
“Research on LSVT LOUD has documented that people with PD show improvements in loudness and intonation of their speech, as well as clarity of speech, facial expressions”
The key for Fitness Professionals is knowing how to appropriately apply facial, swallowing and vocal projections drills to private and group sessions. Below are some tips to utilize with your “fighters”.
Occupational Therapy Tips:
Decreased facial expression:
Practice recognizing emotions in other people and creating appropriate responses. These responses may include facial expressions and verbal communication. Practicing these reactions to others can help support relationships.
The word, “affect” refers to the appearance of emotion through facial expressions, voice tone, and body language or gestures. If you have trouble with facial expressions, try to express yourself more through adding gestures or body language when you communicate.
Communicate your situation! Try explaining your trouble with facial expressions and decreased voice volume to people who may not initially understand.
Facial exercises:
look in the mirror and practice your facial expressions.
hold a smile, raise your eyebrows as high as you can, bring your eyebrows together to frown, open your mouth as wide to stretch your jaw, close your eyes tightly and open them wide, close your mouth and expand your cheeks, stick your tongue out and stretch it in each direction
Try to exaggerate your facial expressions and lip movements when you speak
Drooling:
When eating:
Try to maintain good posture
Focus on keeping your chin up and lips closed when eating
Swallow often to limit saliva
Avoid sugary foods that create more saliva
Lip closure exercises:
Close lips tightly for 5 seconds and release (5 times)
Close lips around tongue depressor and hold while trying to pull from mouth for 5 seconds (5x)
Fill your cheeks with air and move the air from cheek to cheek (5x5 times)
DYSPHAGIA (Swallowing)
Image courtesy of www.wedishnutrition.com
Transferring food from a utensil to the mouth, chewing the food then swallowing and most likely socializing all at the same time without any problems is a task most people take for granted. According to Dr. Jose Vega MD, PhD, three phases must occur in order to swallow properly.
The Oral Phase- This phase begins when food is placed in the mouth and moistened with saliva. Moistened food is called a food bolus.
The Pharyngeal Phase- As the food bolus reaches the pharynx, special sensory nerves activate the involuntary phase of swallowing.
The Esophageal Phase-As food leaves the pharynx, it enters the esophagus, a tube-like muscular structure that leads food into the stomach due to its powerful coordinated muscular contractions. The passage of food through the esophagus during this phase requires the coordinated action of the vagus nerve, the glossopharyngeal nerve, and nerve fibers from the sympathetic nervous system.
Difficulty swallowing as it pertains to PD, reflects a deficiency of dopamine in the brain and often improves with medication and therapy/exercises. Drooling is also a symptom and is caused by reduced reflexive swallowing not from an overproduction of saliva but tends to improve with dopamine replacement therapy. I have come to learn over the years that tremors and swallowing problems are usually the reason someone living with PD isolates themself. It is embarrassing to finally get food on your utensil only to get it to your mouth and realize it has scattered all over the place or fear of aspiration which by the way may not always be heard. Aspiration can be quiet and lead to aspiration pneumonia, the leading cause of death in PD.
Care-partners and Fitness Professionals need to recognize the signs of aspiration as noted below.
Coughing Before/After Swallowing
Trouble chewing
Pocketing food inside the cheek
Gagging during a meal
Crying or face turning red while eating
Drooling especially during meals
Clearing the throat before/after and throughout the day
Hoarse during and after the meal
For this reason, Coaches at Bridges For Parkinson’s offers popsicles to our "fighters" at the end of class. And they love it! They can have a fun treat without the fear of dropping food and visit with others so it is a win-win! Plus, it allows us to make sure they are hydrated. Sneaky, sneaky!
If a person living with Parkinson’s Disease or their care-partner is not sure whether their loved one has a swallowing issue, the Parkinson’s Foundation provides some great questions to help determine the answer.
Have I recently lost weight without trying?
Do I tend to avoid drinking liquids?
Do I get the sensation of food being stuck in my throat?
Do I drool?
Is food collecting around my gum line?
Do I cough or choke before, during or after eating or drinking?
Do I often have heartburn or a sore throat?
Do I have trouble keeping food or liquid in my mouth?
ORAL EXERCISES to help with Strengthening and Coordinating the LIPS.
1. Pucker up and blow a “oooo” then transition to an “EEEEEE”(SMILE BIG!)
2. “MMMM” press lips together as much as possible and take a deep breath in and hum.. good for the lungs too.
3. “Blowfish Hold” and hand isometrically pushes into cheek
TONGUE- ROM, Coordination and strength to help with eating and drinking.
1. Stick tongue out as far as possible and hold it there (add SPOON FOR RESISTANCE)
2. Stick tongue out and up and hold (ADD SPOON FOR RESISTANCE)
3. Stick tongue into sides of cheek (helps with food deposits)
4. Roll tongue back and press against roof of mouth
In addition to swallowing exercises, meal prep aids in reducing issues brought on by dysphagia and may lower the risk of aspiration. The APDA Organization recommends the following nutritional information.
Foods that don’t require vigorous chewing. Avoid dry and crumbly foods.
Moderately textured wheat breads instead of very coarse, nutty breads or very soft, white breads.
Oatmeal, cream of wheat or moistened dry cereals instead of coarse, dry cereals.
Well-cooked, tender chicken/turkey, well-cooked fish without bones, chopped and ground meats, instead of stringy, tough meats that require a lot of chewing.
Soft casseroles and poached or scrambled eggs
Mashed potatoes or rice, moistened with gravy or margarine, instead of wild rice or French-fried potatoes.
Soft, cooked pasta elbows, instead of long spaghetti.
Soft, well-cooked vegetables, cut up or creamed, instead of raw vegetables or those with a hard texture.
Pureed or mashed fruits, fruit juices and fruit sauces, instead of fruits with seeds or hard outer skins. Avoid nuts, seeds or coconut.
Custard, yogurt, ice cream or other soft desserts
SPEECH:
The article begins with a story of a grandmother experiencing dysphagia, hypomimia and hypophonia (softness of voice). But people living with PD are not limited to hypophonia when it comes to speech problems. Dysarthria and tachyphemia are additional speech issues people living with PD may experience.
Hypophonia or softness of voice is a condition that the Davis Phinney Foundation states 90% of people living with PD will experience. Characteristics of hypophonia include raspy voice, low speech volume, breathy and/or monotone speech.
Dysarthria is another speech issue related to PD. It is characterized by poor articulation, respiration and/or phonation according to the National Aphasia Association. Speech will come across as slurred, effortful and can often be mistaken for inebriated. Doctors encourage people living with PD who are still driving to wear a bracelet to help law enforcement know they are not drunk.
Tachyphemia or acceleration of speech is also related to speech issues. A person struggling with tachyphemia will sound like all their words are jumbled together and often feel like their tongue is twisted.
While these issues are troublesome and frustrating, there are some easy and even fun ways to combat low volume, slurred and accelerated speech.
Music Therapy-therapy defined broadly by the American Music Therapy Association as “a treatment including creating, singing, moving to, and/or listening to music [through which] clients’ abilities are strengthened and transferred to other areas of their lives.” All over the country, Parkinson’s Choirs are using singing to help improve respiration, swallowing and enhanced volume and clarity of voice.
Breathing Drills- Strong lungs reduces risk of pneumonia and allows the person to complete ADL’s with little to no complications.
LSVT LOUD- an effective speech treatment for people with Parkinson's disease (PD) and other neurological conditions. A study on hypophonia in PD reviewed the effectiveness of LSVT treatment for those with idiopathic PD and found that voice loudness significantly improved. Goals include: increased voice volume, improved articulation,increased confidence with communication, and changes in neural function related to speech https://n.neurology.org/content/60/3/432
Speak Up For Parkinson’s App- Yes! An app with exercises that also provides visual feedback on volume. https://apps.apple.com/app/speak-up-for-parkinsons/id784117908
EXERCISES:
Breathe in and exhale on a vowel for 5 seconds.
Hum for 3 seconds making sure to press the lips together then have the “fighter” say…. Their favorite food or movie or color.
Hum for 3 seconds then say the vowels, sliding the voice from one vowel to the next.
Recite a poem with various emotions.
Partner “fighters” and have them share jokes with each other. Whoever laughs the hardest wins!
Close class or a session with a short song or team phrase .
Fitness Professionals have the unique opportunity to incorporate exercises for the face, voice and swallowing while also performing strength and/or cardio exercises. You do not have to separate the two. It is a great way to challenge the cognitive aspects and the physical, all while having fun! The best part is it creates a community moment which deepens their love and trust for you, the fitness professionals. You are making a difference!
References
ParkinsonsDisease.net (Emily Downward)
Mayo clinic
Ricciardi, L., De Angelis, A., Marsili, L., Faiman, I., Pradhan, P., Pereira, E. A., Edwards, M. J., Morgante, F., & Bologna, M. (2020). Hypomimia in Parkinson’s disease: an axial sign responsive to levodopa. European Journal of Neurology, 27(12), 2422-2429. https://doi.org/https://doi.org/10.1111/ene.14452
Mäkinen, E., Joutsa, J., Jaakkola, E., Noponen, T., Johansson, J., Pitkonen, M., Levo, R., Mertsalmi, T., Scheperjans, F., & Kaasinen, V. (2019). Individual parkinsonian motor signs and striatal dopamine transporter deficiency: a study with [I-123]FP-CIT SPECT. Journal of neurology, 266(4), 826–834. https://doi.org/10.1007/s00415-019-09202-6
Adrienne Wootton, Nicola J. Starkey & Carol C. Barber (2019) Unmoving and unmoved: experiences and consequences of impaired non-verbal expressivity in Parkinson’s patients and their spouses, Disability and Rehabilitation, 41:21, 2516-2527, DOI: 10.1080/09638288.2018.1471166
National Institute of Diabetes and Digestive and Kidney Diseases. Your digestive system & how it works.
Finsterer J, Grisold W. Disorders of the lower cranial nerves. J Neurosci Rural Pract. 2015;6(3):377-391. doi:10.4103/0976-3147.158768
National Institute on Deafness and Other Communication Disorders. Dysphagia.