You Don’t Understand Me

You Just Don't Get It

You Just Don’t Get It

Many spouses and partners complain that their loved one is sometimes clueless that a conversation is getting strained. The person with PD seems to miss some of the clues that the partner is not happy. There is probably no greater problem among couples with PD than relationship strain arising out of conversations that seem to go nowhere. Often, I hear this frustration described as lack of concern or attention on the part of the person with the PD.

The person with the PD may actually be getting the blame for a little-discussed problem arising from the disease rather than the person.
Although we are used to calling Parkinson’s disease a movement disorder, it can also described as a “communication altering illness” because of its impact on interactions with significant other people in one’s life. A growing body of research has documented many deficits in communication that impair social functioning.

The research suggests many people with PD have some difficulty recognizing emotional cues others express through voice and facial expressions. Missing indicators of how another person is feeling raises the possibility for blocked communication. The person with PD risks responding inappropriately, or even worse, not at all.

The brain is the locus of our interactions with the world. We understand this intuitively but often overlook the possibility that PD-related changes in the brain might change those interactions. However, the bulk of research on cognitive changes with Parkinsons has focused on memory, attention, language, spatial perception, and some of the higher level thought processes we identify with the somewhat enigmatic term “executive function.” Changes in these areas have been documented but they do not fully explain why some people with PD struggle with empathetic communication.

Only recently has research focused on how the disease might affect social cognition. This is the term for the array of brain activities that allow us to engage in meaningful social interactions. Perhaps not surprisingly, deficits in how individuals with PD perceive and process social cues have been documented. What’s more these changes are relatively independent of motor changes suggesting that are not simply a product of a movement disorder. For example, individuals with PD tend to have word-finding difficulties, difficulty generating words to a specific cue, and use a relatively simplified sentence structure when compared with neuorologically-intact individuals. People with PD may have mild deficits in comprehending sentences, may be less effective with their appreciation for verbal context, and demonstrate deficits in interpretation of figurative language. These changes may be somewhat mild in absolute terms but in the face of the subtleties that are so common in human communication, could be quite disruptive.

In addition to difficulties parsing the language of others, some people who have PD have difficulty reading expressed emotions, particularly negative ones such as anger, fear,sadness and disgust. That is, they are less able to identify the signals in the faces and voices of the people they interact with. A 2010 meta-analysis by Heather Gray and Linda Tickle-Degen combined the findings of many smaller studies to confirm these deficits were real. A later study by Sharon Buxton and colleagues (2013) found that identification of prototypical emotional cues was intact among individuals with PD; problems tended to arise when more subtle expressions of emotion were presented. Interestingly, the problems with emotion recognition appeared to exist independently of the depression so commonly seen among men and women with PD. Difficulties with emotion recognition, particularly when subtle, may make it more challenging to accurately appraise interactional data resulting in increased interpersonal stress. PD-related deficits in emotion identification correlate with social frustration and feelings of lost connectedness suggesting that this may be one reason for decline in quality of life above and beyond the impact of motor problems.

The mechanism for the problems with accurate assessment of emotions from the rhythm, intonation, and stressed components of speech of others may be partly a function of higher order brain changes in the area of the frontal lobes of the brain. For example, vocal inflections can alter the meaning of a simple statement such as “You really understand me” depending on whether the speaker is being sarcastic or expressing honest appreciation. PD-related deficits in interpreting the prosodic elements of speech can cause misinterpretation of the speaker’s intent.
The accurate assessment of emotion from facial expressions in others may also have frontal lobe inputs but the area of the brain associated with movement difficulties, the basal ganglia also share connections with portions of the brain known to be involved in emotion interpretation. A 2014 study by Michelle Marneweck’s team found that the level of voluntary control in facial musculature was correlated with accuracy in emotional identification even when age and overall disease severity werecontrolled for. Recent theories about how humans perceive emotions have suggested that a covert process of emotional simulation may be in play. Thus, impaired covert mimicry of observed expressions may play a role in the deficits observed among individuals with PD. Their facial muscles are less able to translate the mimicry into an accurate assessment of another person’s emotional status.

It appears possible that facial masking may obscure more than the internal state of the person with PD.
There is evidence that interpersonal difficulties are common with PD and tend to have a greater impact on quality of life. Many spouses and partners complain that the person with PD doesn’t seem to understand them and can seem oblivious to how upset their loved one really is. I frequently hear of emotions of a significant other boiling over, much to the surprise of the person with PD. “I don’t understand what happened,” is a common description by the person with PD.

In my work with couples, I have begun to make communication patterns a central part of what I do. When I can help a person with PD more accurately assess what is going emotionally with their partner, I find the work on other aspects of PD proceeds more smoothly.

Dr. Paul

When Parkinson’s Becomes a Meditation

 It Is The Discipline of Yoga That Gives It Power Over Parkinson's

It Is The Discipline of Yoga That Gives It Power Over Parkinson’s

Yoga has become an extremely popular adjunctive therapy for people with Parkinson’s disease. There are a number of studies suggesting that that yoga can improve flexibility, movement, breathing, and mental focus. Yoga classes are springing up everywhere and many of the national and regional PD organizations sponsor programs.

The benefit of yoga won’t surprise anyone who has learned this ancient practice. I do have concerns that many of the PD-focused yoga programs have become somewhat divorced from the underlying principles of disciplined self-mastery.

Hatha yoga, the form of yoga on which PD programs are modeled, is a meditation on the various poses one shapes one’s body into. One doesn’t simply stretch into a position, one focuses completely on the act of moving into and “becoming” the position as one meditates on its ideal form. Westernization of traditional hatha yoga has tended to extract the stretching, flexibility, and balance elements in much the same way we extract vitamins and nutrients into supplements we faithfully swallow in the morning. Context and a natural balance are lost in the process.

One of the reasons I find this to be a troubling trend is that so many individuals who have PD have unwittingly developed a very powerful meditation of their own. Shifting from this unintended meditation to the purposeful yogic form is likely to provide many benefits, not the least of which is some relief from the suffering so many experience because of their PD.

Meditation is essentially directing the mind to a single point of focus. The human mind is a busy place. Our thoughts bubble up and move like an ants in a hill that has been kicked up. With practice, however, we can learn to bring a stillness to our thoughts by concentration on a single point. The point of focus may be the physical pose, a word or phrase, a sound, an image, or something as mundane as the breath. Even the acts of walking or dancing can be meditation so long as the mind is focused intently on the movement. Our chaotic minds can become calm and settled.

 We Can Meditate on the Wrong Things

We Can Meditate on the Wrong Things

Folks with Parkinson’s have inadvertently mastered a less constructive form of mediation that might best be called “symptom focus.” PD has a way of demanding one’s attention. Tremors, dyskinesia, and dystonia are hard to ignore. In fact, they demand attention, all too often to the point of becoming the only thing one can perceive. The problem is that our body is very obliging when it has our attention and is often guilty of intensifying the phenomena under observation. I see this frequently when I call attention to someone’s tremor only to have it magnified because we are observing it.

Notice the feedback loop that can occur here. Pay attention to one of the many annoying phenomena of Parkinson’s and you risk making it not only a single point of focus but an intensified one. I would argue one has then allowed PD to become a meditation. And when I am able to divert this focus, my clients learn something about its impact on how their PD is experienced. This is just the place that the meditative practice of yoga can make a powerful difference in a person’s ability not just to cope with their PD but to transform it for brief periods at least. And as success breeds success, many people are likely to find that they increasingly gain a degree of mastery over what once mastered them.

When yoga becomes a discipline rather than a series of chair exercises a person with PD simply adds to their daily pill regimen, it has the power to transform. Transformation is not a cure but there is a lot to be said for mastery of a difficult life experience.


Dr. Paul

What to Do Between Neurology Appointments

Life is what happens between neurology appointments.

We don’t talk about this much but facts are facts. The best medical treatments for PD can do no more than relieve neurological symptoms. Your medications buy you some time without PD mounting a full assault on your daily life. Without well targeted treatments, that assault would be devastating. Your neurologists can’t cure your disease but can modify its impact on you.

However, your neurologist can’t give you directions for using that time treatment buys you. The quality of life that follows is entirely up to your discretion.

One way to spend the time good treatment buys you is to direct your full attention to that bright future when there will be a cure for Parkinson’s. A cure will come; we all know that. All one has to do is sit and wait, doing nothing more as time passes. Monitor the Internet for the latest breakthroughs, religiously search PubMed, but most importantly, wait patiently and don’t let anything move you from your chair. Life passes you by, of course, but that is just the cost of keeping one’s eye on the future.

Another approach might be to keep one’s eye on the symptoms that are still there rather than being reasonably satisfied that that a significant number are muted. Remind yourself that you have gotten a bum deal, that Life has not been fair, and that you didn’t deserve this. Spend those good moments with a chip on your shoulder and growl in your voice. Life passes you by, of course, but at least you aren’t wasting it on groundless optimism.

Another, perhaps better way to use that time your neurologist buys you is to focus on those precious minutes. Make a decision to use them wisely and completely. Talk with family and friends about how you can dip a toe in the stream of life again, then do your best to wade back in. Think about those things that make your life uniquely yours, those things that give it quality. Be aware that the symptoms will come back and that the disease will become worse over time then resolve not to dwell on either fact. Envision your life as an exception to the rules of Parkinson’s because you are choosing to make it so. Life passes you by, of course, but it will be a life well lived.

Life happens between neurology appointments. The gift that comes from proper treatment is yours to use in whatever way you choose.
Dr. Paul

Dr. Paul Short, Neurocognitive Expert, Behavioral Scientist, and Personal Coach