.THE PARKINSON MASK

Don Hitko, Facilitator of the Greater Lansing Area Parkinson's Support Group, is a very positive individual who is an inspiration to many. He has been creatively working to "make sense" out of Parkinson's disease from a person with PD and family point of view. This article is intended to persuade others to look beyond the obvious when you are with someone who has....THE PARKINSON MASK

(Permission to reproduce by author)

In this age of computers, any subject of choice usually can get more than enough coverage. This is a blessing for those of us who have Parkinson's disease. As we prompt and poke at our computers, an avalanche of descriptions, advice, reports, treatment trends, testimony, and inspirational offerings becomes available. Never in short supply are accounts of courage, sacrifice, and determination as we attempt to cope with our disorder.

As we access the multitude of resources for our information, a realization can form from the sense that with all this knowledge, inspiration, and support that we are fondling, something is still not on target. What seems to be beckoning is the need for expression of the turmoil that churns in our bodies, minds, and souls. Knowing is not enough! We can feel from one moment to the next that we are trapped in a body and mind that is becoming increasing hard to manage. This moment to moment awareness is fueled by a blunt sense of isolation and alienation.

Contributing to this dilemma is the unfortunate way that Parkinson's sculptures our minds and bodies. It is how this chronic ailment affects our inner and outer selves as we try to interact with our families, friends, any other good folk. This has its beginning with the conditioning we all have to each other's body language, and to the abilities needed to connect and communicate.

The person with Parkinson's disease doesn't project an approachable persona. The loss of some of the control of the face and head muscles creates a stare-like feature that is referred to as the "Parkinson Mask." The eyes don't blink as much; the smile, if there is one, appears forced or is of a short duration. The stiff neck and shoulders remind us of Frankenstein. There may be uncontrolled movements that vary from excessive to a Zombie-like absence. The hunched back is a reminder ofthe bell ringer from Notre Dame. There can be a funny gait, drooling, an unkempt appearance, and - heaven forbid - a body odor! This all adds up to an approachability that is uncomfortable, if not repelling.

If contact is eventually made, further dissonance is encountered. The voice of a Parkinson Person is often raspy and lacks volume that is not perceived by its owner. Any exchange of conversation is followed by a request to repeat what he has just spoken. Sometimes, no attempt to hear is resorted to. As the Parkinson one speaks, there is a tendency to run the words together, especially in a telephone conversation.

If a request is made to help communication by writing down the message or idea, then another Parkinson hardship is on tap: the lack of coordination causes handwriting that is barely legible.

Difficulty with memory is another burden a PD person can experience. The slow responses, the mixed up details, further make the situation uneasy.

Low libido due to the disease or the medicine taken, puts into hibernation the masculine and feminine interplay that can add radiance to any interaction. Balance problems plus muscle weakness and stiffness result in a reluctance to move about, which leads to judgments that you want to be left alone.

Parkinson People are too often slow and fumbling. This does not go well with our hurry hurry lifestyles. The whining response from the PD person is "I am doing it as fast as I possibly can. Please be patient!

Sleep disturbance is more than occasional for the one with the masked face. Yawning and loss of attention help to pile on the discord.

Fluctuation of moods can add to disruptions. Within the short span of time that medication wears down, a swing in feelings or any sense of well being can change into a "joyless cranky wanting to withdraw" mood. This inconsistency adds a wariness to the relationship.

The focus in this presentation is not meant to detract from the lofty qualities that are companion to warm hearted people and their care givers. It is meant to raise the curtain on the predominant struggle that too often is buried under the "chin-up" rallying cry that can misdirect some well-intended cheerfulness.

Suppression of the powerful torment that can encompass this chronic condition can lead to an unwillingness to engage the despair and inaction that can bring life to a creep!

The Parkinson mask can hide the face from the reality that exists in a warm and tender heart that may be in disguise.

https://www.parkinsonsmi.org/articles/the-parkinson-mask.html

***************************************************************************

Behind the Mask of Parkinson’s

Researchers explore the communications hurdles faced by those with the disease and how they can be overcome

By Robert Bochnak

The man in the video sits alone, speaking about a wedding he recently attended. On the surface, there’s nothing unusual about the conversation, but as the tape goes on, a curious flatness in his voice and manner are evident. Linda Tickle-Degnen, professor and chair of occupational therapy in the Graduate School of Arts and Sciences, lets the video run for a few minutes before she begins making observations.

People with Parkinson’s disease can exhibit “facial masking,” a symptom in which facial muscles become immobilized, leaving them with blank expressions. Illustration: James Steinberg

She starts with the man’s lower body, noting that he hasn’t moved or otherwise repositioned himself since the interview began. Next, she calls attention to his left hand, which has been trembling slightly. She ends with his face, but no explanation is necessary: he’s remained almost expressionless.

To the untrained eye, the man appears disinterested, even bored. But to Tickle-Degnen, it’s clear that the subject, a Parkinson’s disease patient, is exhibiting “facial masking,” a symptom in which facial muscles become immobilized, leaving patients with blank expressions.

“The face is the primary way we communicate with other people,” says Tickle-Degnen, who has been researching nonverbal and verbal communication among people with Parkinson’s and other diseases for the past 20 years. “We tend to believe the actions of a person more than their words. So a person with Parkinson’s disease may be saying that they are really enjoying life, but may not be believed.”

Work being done at the Tufts Health Quality of Life Lab, which Tickle-Degnen directs, could be instrumental in helping people with Parkinson’s express themselves better and be understood more clearly. Right now, the research is focused on improving communication in an area where many such patients have important relationships—the health-care system.

“Practitioner-patient interactions are social relationships,” says Tickle-Degnen. “If a neurologist, speech therapist or occupational therapist gets the feeling that the person they’re working with is disinterested or depressed, then this relationship can be affected.” Tickle-Degnen notes that even experts sometimes fail to ask patients with Parkinson’s about their feelings, because facial masking hides depression, deception, hostility and apathy.

“If there were a way that we could train practitioners to better detect how positive or negative a person was feeling, we could help strengthen these relationships,” Tickle-Degnen says.

Anatomy of a Smile

“I see it as a challenge, to get out there and help people understand why this work is so important for people with Parkinson’s,” says Linda Tickle-Degnen. Photo: Alonso Nichols

There are at least 43 muscles in the human face. Working in concert with other parts of the body, these muscles help people to smile, frown, grimace and express subtle feelings. The key to these movements can be found in the neurotransmitter dopamine, which helps regulate how people produce facial expressions, as well as walk, run, perform hand gestures and carry out other movements in a coordinated way. But when dopamine-producing cells in the brain are damaged, the result can be an inability to control motor functions. This loss of motor control is a key feature of Parkinson’s disease, which affects some 1.5 million Americans and is the second most common neurodegenerative disease, after Alzheimer’s.

Parkinson’s symptoms include tremors, limb stiffness and difficulty moving and maintaining balance. If you add the vocal challenges of Parkinson’s to the mix—some, like the man in Professor Tickle-Degnen’s video, have difficulty modulating the tone of their voices—it would seem that the obstacles to effective communication with the outside world are insurmountable. But Tickle-Degnen is optimistic.

While emotions may not be visible on the faces of many people with Parkinson’s, it is possible to find out what they are feeling if you focus on what she calls “reliable cues,” the ones that don’t change even with facial paralysis.

Tickle-Degnen and her team of researchers have conducted and videotaped 500 interviews with Parkinson’s patients as part of their research. A typical interview consists of a series of positive (“what do you enjoy doing?”) and negative (“describe a frustrating event that occurred last week”) response questions. Subjects are then rated using a coding system Tickle-Degnen developed, called the Interpersonal Communication Rating Protocol. Using it, coders look at, among other things, the frequency with which subjects express nonverbal cues.

“For all the interviews, we analyze facial behavior, body movement and voice, and we also do text analysis,” says Tickle-Degnen. “I ask them about their feelings: if they are happy, unhappy and so on. We’re looking for particular cues.”

Beyond feeling and mood, personality is also expressed through the body. “People who are very sociable and extroverted tend to use large motions with their hands and tend to be very facially expressive, meaning that their faces are showing a lot of motion,” says Tickle-Degnen. Yes, motion, she says: their faces are moving. “And when they tend to be more introverted or shy, they tend to move less in their whole body. Their body is a little bit more quiet, and their facial expression is quieter.”

Training to Read Parkinson’s Patients

Although the research is still being collated, some critical findings have emerged. One is that when patients are asked positive questions, their facial masking is less intense, says Tickle-Degnen.

“This is really important for people who work with Parkinson’s patients, since many tend to do what is called a ‘problem-oriented interview.’ They ask, ‘What problems are you here to talk to me about today?’ Typically, nobody asks people with Parkinson’s about positive things, because there’s not much positive emotion on their faces,” she says.

The next step for the researchers is to train health-care practitioners how to interpret their patients’ nonverbal cues and help them focus more on what the patients are actually saying—a practice that goes against the way people intuitively read one another, which is visual.

“Perceptions of sociability are biased, based on the stiffness and rigidity that can result from Parkinson’s,” says Heather Gray, a postdoctoral fellow in the Health Quality of Life Lab, whose research involves training Tufts graduate and undergraduate students to recognize certain cues in people with Parkinson’s.

Looking for Cues

Once the coding process for the interviews is complete, short clips of them are shown to Boston-area doctors and therapists, whose own responses are then studied and analyzed.

“We ask the practitioners to tell us how happy, depressed or cognitively intact they think the person is. We also ask them to tell us how sociable they think the person is and what mentally challenging activities he or she might be interested in,” says Tickle-Degnen, whose research has been supported by the NIH’s National Institute of Neurological Disorders and Stroke and National Institute on Aging.

“These are not judgments about how much smiling the person is doing, but more social level or diagnostic judgments,” she says. This type of information is critical, since judgments like these play key roles in treatment decisions.

Although Tickle-Degnen’s research takes place primarily at the Tufts lab and in Boston-area hospitals, the scale of the study is global. She is also studying how practitioners from Taiwan perceive patients with Parkinson’s, since cultural norms affect people’s perception of facial masking. Tickle-Degnen says their findings show practitioners may “think they’re being objective in their diagnoses, but that they are being driven by cultural norms in determining depression or dementia or lack of it.”

She’s also doing research that will help people with Parkinson’s deal with their condition. In collaboration with neuron-rehabilitation and movement disorder clinics at Boston University, she has conducted a randomized control trial that studied three groups of Parkinson’s patients: one that was given medication only and two that were given medication and different intensities of “self-management rehabilitation.” This included facial exercises that helped patients retain their facial expressivity to some extent.

“The primary thing we’ve measured so far is quality of life,” says Tickle-Degnen, who has advanced degrees in both occupational therapy and psychology. Those people who received rehabilitation reported that their quality of life was greater, in terms of their ability to communicate with others and not be misunderstood, and to move around the community to perform their daily life activities.

She believes the best step in shrinking the communication divide between practitioners and those with Parkinson’s is sharing what she and her researchers have discovered. But she concedes that getting the word out is just the beginning. She’s published widely and been quoted in national media outlets such as National Public Radio and the Boston Globe.

“It’s wonderful to have people read the articles we have published,” she says. “It’s another thing for people to actually use what we have found. I see it as a challenge, to get out there and help people understand why this work is so important for people with Parkinson’s.”

To learn more about the Health Quality of Life Lab and its Parkinson’s-related research, call 617-627-4667 or go to http://ase.tufts.edu/hql.

A longer version of this story appeared in the Summer 2009 Alma Matters magazine.

Robert Bochnak can be reached at robert.bochnak@tufts.edu.