All the PD books on the market talk about changes in cognition. However, as most are written by either patient or neurologist, cognition is not often an area either is well-versed in. As a neuropsychologist, I am frequently called upon to articulate the problem to help the patient’s care team make decisions about medical management, vocation, and treatments, including DBS. This subject is too complex for a single blog, but it is possible to provide at least an overview.
“It can’t be Parkinson’s disease. You’re too young.”
With these words begins an epic journey in a quest for answers to the vexing question, “Could this be Parkinson’s?” One is most likely to hear this response from the family doctor but other physicians are often just as likely to utter the too-young-for-PD refrain when you work up the courage to ask “Could this be Parkinson’s?”
Why is this answer so common?
So why does PD appear in custody battles? I won’t speculate on the motives of either spouses or their divorce attorneys other than to say that no one enters a court case with the intent to lose. A chronic neurological disease like Parkinson’s is often so grossly misunderstood by the general public that it may seem like a compelling opportunity to cast the spouse who has it in an unfavorable light. Throw words like incurable, progressive and debilitating into one legal document or courtroom statement and it is quite possible to play upon public misperception.
In my last blog, I discussed how PD dopamine agonists can cause compulsive behaviors in some patients. A recent study suggested that this could occur in as many as 13% of patients taking these drugs. I would now like to look at signs that should trigger concerns about compulsivity.
Any behavior that seems to have taken on a life of its own should trigger an evaluation for compulsivity. Endless hours at the computer to the exclusion of time with the family would be one example; hypersexuality another. So would purchases of reams of lottery tickets or an enthusiasm for the daily trading of financial instruments. Many activities would not typically be considered compulsive because they result in positive outcomes. For example, compulsive cleaning or yardwork can produce a tidy, well-kept home. But if these behaviors are relatively new or have become exaggerated over time, there is likely to be a problem.
I have heard a lot of folks with early onset Parkinson’s talk about how a dopamine agonist made them behave compulsively: excessive gambling, hypersexuality, incessant computer use, shopping. Although the research still needs to be done, my background in neuroscience and the psychology of learning allows me to propose a hypothesis for what might be going on.
Raising a teenager is a challenging and bewildering job under the best of circumstances. The task becomes even more complex when one of the parents is also struggling to make sense of Parkinson’s disease. The key to managing life as a parent with Parkinson’s is learning to recognize your teenager’s developmental needs then putting strategies in place for meeting them.
Originally developed as a model of preparation for death, Dr. Edith Kübler-Ross’ five stages of grieving-denial, anger, bargaining, depression, and acceptance- are often applied to life-changing events. Receiving a diagnosis of Parkinson’s disease certainly qualifies as life changing and Kübler-Ross’ model is helpful for guiding an individual in a quest to come to terms with the diagnosis.
It is almost standard practice to approach the model as a step-by-step sojourn, beginning with denial (“It can’t be PD. The diagnosis must be wrong”) and ending with acceptance. However, this practice presumes that the stages are sequential and unidirectional. They are neither. One does not simply progress through the stages one after another, completing one then graduating to the next. In fact, it is quite common for an individual’s journey through the stages to be marked by advance, retreat and even leaps over a given step altogether. Some people get the sequence scrambled, some get stuck in a given stage, and some people find the whole Kübler-Ross model doesn’t even apply to them.
My last blog discussed the difficulty in making a transition back to the family home because of Parkinson’s Disease. In that entry, I discussed the relationship challenges such a transition entails. In this entry, I want to discuss the loss of independence.
In some ways our Western ideas about independence are a part of a devastating paradigm that produces unnecessary guilt when we must live with family. We equate a return to the bosom of our family as failure. We are relinquishing control of our lives.
People with young Parkinson’s often lead double lives. They walk uncomfortably between two worlds - the one that knows they have PD and the one that doesn’t. The decision to reveal your disease to anyone is very personal and far too complex to reduce to a few simple guidelines. The risks and benefits are unique to both situation and person. There are, however, some things to keep in mind as you choose to discuss your PD.
You are really interested in someone. You have had a couple of dates with this person, and you know that you would like this relationship not only to continue but to grow. In a recent last blog entry (1/16/12), I cautioned about putting too much meaning into early dates. But there can come a time when it is no longer just a date.