The term “pushing on a string” relies on the metaphor of trying to move two objects joined by a string. One can pull on one of the objects, relying on the string to tug the other object along, but good luck getting any kind of movement by pushing instead. In fact, no movement is likely to occur until the two objects bump against one another.

The metaphor seems to aptly describe the situation many families face when PD reaches a point marked by inactivity and passivity. Many partners respond to this situation with strong pressure on the person with PD to become more actively engaged in their life again. However, the effect is nearly always that of pushing on a string.

Passivity can arise with a change in the functional integrity of the neural pathways facilitating communication between deep brain structures and areas involved in high level cognitive processing. Insult to these neurological pathways can result in a decline in self-initiated, motivated behaviors. This is one aspect of the organic state known as executive dysfunction. To date, no medications are available to treat this amotivational syndrome.

Amotivational syndrome is somewhat mysterious to a neurologically-intact (“normal”) person. It is not the case that a person with the condition is lazy or doesn’t care about doing those speech or physical therapy exercises at home. Rather, sometimes he or she simply does not think to do them. Depending on the severity of the condition, there may be difficulty breaking through the cognitive inertia necessary to get started even when a reminder brings the need to do something to mind.

Our clinical experience is that some degree of amotivational syndrome is very common in PD and that it may come surprisingly early in the disease process. Individuals challenged by PD early in life may not be spared and in some cases we have found that this presentation, as well as other forms of executive dysfunction, may appear long before motor symptoms drive a person to see a neurologist for the first time. We must qualify qualify this hypothesis by saying that our sampling is likely to be biased because so many of the people who present for therapy and neurocognitive evaluations do so precisely because they are experiencing life problems. Many of their reports about “thinking problems” are retrospective and therefore not rigorous in a scientific sense. On the other hand, we have a lot of conversations with families who are not actively seeking our services but still report elements of cognitive dysfunction that have a flavor of amotivational syndrome. The volume of reported problems has been great enough to get our attention.

Amotivational syndrome can look a lot like depression and frequently co-exists with it. It is always important to rule out or treat this psychiatric disorder because the two conditions can operate in tandem to amplify behavioral inertness. Depression is potentially treatable through a combination of pharmacology and psychotherapy. It is also important to determine if the loved one is experiencing dementia, a far more serious condition that produces a more pervasive decline in executive function.

Amotivational syndrome in a non-demented, non-depressed individual can be managed if one avoids pushing a string. Take it as gospel that demanding, arguing, begging, wheedling, or haranguing is likely to produce a minimal effect at best. Expect copious amounts of frustration and resentment from everyone.

It is important to accept that the problem is present, permanent, and now a fact of life. The situation calls for flexibility, ingenuity, and patience. When amotivational syndrome is truly the reason the loved one struggles with meeting the demands of the day, the dynamics of the relationship have changed and it may become necessary to be gently directive but not overly reactive. Doing things that are within the person’s behavioral repertoire may actually reinforce the behavioral inertia by building up a sense of helplessness.

Open communication is the key to avoid pushing a string. Negotiate a schedule for regular daily activities; mutually establish a list of household chores the person with PD can reasonably manage; make it clear that diminished motivation is not the equivalent of diminished responsibility. It is fair and perfectly reasonable to set timers, post reminders, and to cue with statements like “the trash needs to go out.” If the negotiated activities are not done, it is also reasonable to hold the person accountable by reminding them that that the lack of performance has consequences they alone must accept. Individuals with amotivational syndrome struggle with emotional and behavioral inertia but they are not incapable of doing what is in their best interest when it is clear it is their own responsibility. Amotivational syndrome encumbers but it does not prohibit.

Amotivational syndrome presents challenges to a family with Parkinson’s. It is a potential source of stress but it is also an opportunity to enrich relationships and build stronger bonds. The best response is to avoid pushing a string.

Regards,

Your Friends at PDFSO

Individuals who identify themselves as having Young Onset Parkinson’s disease or “YOPD” often tell me they are hesitant about going to support groups. The most frequent reason offered is that “So many people have really advanced PD and I don’t want to see what I’m going to look like someday.” But there is another reason for their trepidation and it was discussed with a great deal of fervor at a recent meeting of our YOPD group.

“So many of those people were a lot older than I am when they were diagnosed. They have different problems. ”

I interpret these statements to mean that those of us working with younger families touched by PD have placed too much emphasis on the age of onset and not enough on the implications of onset at this age. For a person with a career in mid-development, children in need of a parent who is physically and emotionally present, a mortgage, future college expenses, and a retirement fund that is years from anything resembling a comfort zone, medical definitions are misplaced.

Because Parkinson’s disease has traditionally been conceptualized as a movement disorder, the manner in which we discuss it has become medicalized. There are important reasons for identifying a distinct presentation of PD in younger adults. For this group, the disease frequently presents with a slightly different flavor than it does for those who acquire it later in life. There is more dystonia, greater sensitivity to medication-related dyskinesias, increased likelihood for motor fluctuations, and a more gradual advance in severity. For medical researchers and movement disorders specialists, these distinctions are important because they provide clues for current and future disease treatments.

However, the community touched by YOPD has adapted a term developed for medical nosology (disease classification) and applied it to a context for which it was never specifically intended. Classifying a disease presentation makes sense. Employing a nosological classification for an individual life does not. Different periods in human life present distinct opportunities and challenges. We intuitively recognize this when we talk about being at a “stage,” as for example, when we say “I am at a stage in life where other people’s opinions about me don’t matter.”

There are inherent dangers in getting too focused on “stages” because, as with terms like YOPD, these can become reified and take on a life of their own. “Stages” may be bracketed in many ways but in the real world, where nosology and a couple of dollars are required to purchase a Happy Meal, it is more important to recognize that all adults face a number of common challenges determined by how long they have been alive and what life events they are currently facing. When the focus shifts from clusters of symptoms or stage of life, to discussing the common challenges any adult whose life course is suddenly no longer in the ascendant would reasonably face, we are providing an underserved group a forum to talk about what really matters to them.

There is Parkinson’s disease that arrives when life promised possibility rather than adaptation and there is Parkinson’s disease that arrives when possibility has become life accomplishment. Wanting to build family memories with your daughter before she moves off to college is an entirely different experience than showing friends photos of her child in your lap. Teaching your son to fish and throw a changeup is not the same as asking for the video of him teaching these skills to your grandkids. Deciding not to risk a promotion because you are afraid fatigue will make the additional workload difficult is not the same as calling it quits because the challenges of PD and retirement age are in close proximity. Managing a mortgage when you are unsure how long you will be working requires a different thought process than deciding whether to take out a reverse mortgage to manage the cost of PD meds.

Labels aren’t important. Recognizing that Early Life Parkinson’s Disease can have similar symptoms  as the “traditional” presentation but a profoundly different life impact is what truly matters.

Regards,

Dr. Paul

Paul Short, Ph.D.
President, The Parkinson’s Disease Family Service Organization

When a neurologist makes a diagnosis of PD, nothing truly changes from the moment the patient and family first came to the office, except confirmation of the disease. But I have heard the moment described as the emotional equivalent of being hit by the entire defensive line of a pro football team. It is an understatement to say a family is left reeling and confused. The subsequent sense of disorientation endures for weeks or months. In fact, my clinical experience leads me to wonder if the disorientation from the blow doesn’t take several years to subside.

Feelings of disorientation can lead to a sense of crisis. When a family perceives itself to be in crisis, decisions tend to focus on relieving the instability of the moment and are necessarily weighted toward making a rapid response. Crisis response shifts the viability of any solution to a short term perspective of containment and damage control. Although this should be a time for careful reflection and methodical planning, crisis thinking drives many families to make less than optimal decisions.

The sense of crisis is often fueled by paradoxical glut of information that overloads and overwhelms. A family will be immediately directed to support groups, websites, pamphlets and PD 101 books. These materials certainly have a place, but it takes time to digest them and it may be difficult to navigate them to find specific answers to a pressing question: What do we do next?

The answer is simple: Take a deep breath.

There is no aspect of PD than cannot be made worse by haste. This is not the time to ruminate about retirement or going on disability. The moment is not right for telling friends or co-workers about the diagnosis (unless these people have always been trusted confidants). It is certainly not time to tell your employer. Do not evaluate nursing homes and assisted living facilities unless you had already planned to reside in one of these facilities. Do not re-write your will (although it might be a good time to consider talking with an attorney if you don’t have one). Do not consider divorce because there is some notion the person with the diagnosis will be a burden.

In short, do nothing that you were not already considering the day before you got the diagnosis. If you were going on a vacation in the next few months, go on the vacation. If you were applying for a promotion, continue the application process. If you were going to attend your child’s graduation or wedding do not change your plans.

There is an old zen saying that is appropriate here, “When hungry, eat. When tired, sleep.” There will be a time when the sense of crisis dies down and the family may begin to make solid choices and develop viable strategies for approaching the future.

“To every thing there is a season, and a time to every purpose under the heaven.” There is time enough to manage all the aspects of PD but it comes when all the stakeholders have had a chance to regain their emotional equilibrium.

If the diagnosis of PD has left your family feeling off balance, contact the PDFSO for more information.

Dr. Paul

Paul Short, Ph.D.
President, The Parkinson’s Disease Family Service Organization

It is still too early to know exactly what the new healthcare initiative will bring, but this is a time of guarded optimism for families with Parkinson’s disease.

We hope that reform means that families with Parkinson’s will no longer be terrorized by the phase “pre-existing condition.” Loss of flexibility with PD has long been an aspect of the disease both literally and figuratively. Losing health insurance has been one of the deepest fears for families struggling with the disease. Many life choices have been dictated by the need to obtain or retain coverage. This often translates into staying in place when circumstances would otherwise dictate it is time to move on. Parkinson’s plus no health insurance has been a recipe for financial disaster.

Perhaps the greatest hope is that families who have been uninsured or underinsured will find a greater presence both in the movement disorder centers and mental health clinics. Quality of life is predicated on the availability of quality care. The latter has not always been available to families with Parkinsons.

Healthcare reform faces many challenges over the coming months and years. Families with PD understand challenge well. Now more families may understand hope.

Regards,

Dr. Paul

Paul Short, Ph.D.
President, The Parkinson’s Disease Family Service Organization

A neurologist has many potential evaluation tools at her disposal. Most Parkinson’s families are familiar with the standard neurological tests like a timed walk but imaging (e.g. MRI and CT scans), questionnaires, and neuropsychological assessments all provide useful data. However, the most powerful clinical tool at the neurologist’s disposal will always remain the history obtained at the first meeting and subsequently expanded upon with each office visit.

Sadly, a patient history is sometimes less accurate than it could be. When accuracy is suboptimal, there is a strong possibility that the treatment suggested by the neurologist may also be suboptimal. If the maximization of treatment benefit and minimization of side effects is the goal, it would seem that accuracy would be a primary consideration when the patient communicates with the neurologist. Violations of this simple expectation do occur and more often than you would think.

The truth is that many patients exaggerate their health status. Most readers will intuitively understand that some folks might exaggerate symptom frequency or severity in an effort to gain something beyond the simple medical treatment- sympathy, higher levels of medication, or simple validation of their suffering, for example. Most readers would be less familiar with a patient who actually downplays aspects of the disease while in the doctor’s office. As many Parkinson’s families tell me, this tendency is both mysterious and frustrating.

Although I don’t have any hard data, the clinical lore is impressive. Spouse after spouse has told me of watching their partner soldier through the day as if living was an ongoing struggle. Yet, at that next office visit, this same person appears remarkably untouched by the disease. There is spring in the step and a smile on the face during the clinical interview. Direct questions by the neurologist are answered with a jaunty “I’m not doing too bad, Doc” or “As good as can be expected.” The person whose foul mood at home should scream depression, denies any mood problems. “We’re coping pretty well, Doc.” And then there are the denials- no falls, no difficulty getting around the home, no problems with sleep. The person in the office is a different person than the one at home.

Many people do not like to admit to weakness of any kind and may sugarcoat their experiences with PD to give the appearance of coping. Others might avoid openly discussing their concerns for fear the neurologist may deliver more bad news about their health status. Still others might lose sight of how tough it has been when they are face to face with an understanding physician. They just draw a blank during the anxiety of the moment. Sometimes it is a matter of the disparity in status between a doctor and patient. Every physician is, after all, a very well-educated specialist who is typically well-respected by the community. For some people, this assumed difference in status is sufficient to tilt the story away from the day to day truth in an effort to look good in that other person’s eyes. Finally, there is the question of cognitive compromise that diseases such as Parkinson’s may bring with them. Individuals with cognitive changes may inaccurately report because they inaccurately recall.

The net result of any deviation from the true story is a medical narrative that inaccurately portrays an individual’s health. It is reasonable for a physician to accept the information as presented by the patient, unless the history is conspicuously incongruent. He or she is then likely to craft an appropriate therapy based on this history. For individuals with PD, this can mean going home to face treatable symptoms that are not completely treated.

Although Partners might shake their head in amazement, these moments are not a time for blame. The reasons a person with Parkinson’s (and many other diseases) misrepresent their health status is moot when the time spent with a physician is limited. It is important that the partner be available as an accurate health reporter and that he or she be willing to add their perceptions of what their loved one is experiencing. The alternative is one of living with a person with a diminished quality of life due to undertreated PD.

Everyone has a stake in the optimal treatment of a family member’s PD. Diminished quality of life is, unfortunately, quite contagious.

For more information about how to talk with your partner’s neurologist, contact the PDFSO.

Regards,

Dr. Paul

Paul Short, Ph.D.
President, The Parkinson’s Disease Family Service Organization