April is Parkinson’s Awareness Month. My email is packed with posts urging me to get the word out about Parkinson's and offering me a multitude of ways to do so. “Disease Months” serve an important public relations function and typically do a very good job of disseminating information about what a particular medical condition is. As I have gone through the literature and notices I have received about PD the past few weeks, I notice that this Awareness Month focuses very little on what Parkinson’s is not.
Unless one is on guard, Parkinson’s disease will steal your voice.
We are all aware that many men and women with PD find that their voices have become softer and more difficult to hear. Some discover that they have greater difficulty forming words clearly. There might be a loss of prosody resulting in speech that is flat, monotonic, and far less able to express underlying emotion. This is the literal loss of voice.
It is important to remember, however, that we also possess a figurative voice. It is the latter that individuals with young onset PD are most vulnerable to losing. This is voice as metaphor for the Self, and its diminishment can be one of the most devastating aspects of the disease.
Should I go on disability because of my PD?
There is obviously no universal or even best answer to this question. Each individual must come to a conclusion best fitting unique needs and circumstances. However, there are some very common concerns that each person should at least consider during the decision making process.
First, and most obvious, is the issue of standard of living. Disability income is real income but it can never match your current salary. It might be necessary to allow yourself some transition time in order to adjust financial obligations to a reduced income. This may mean selling cars or homes to reduce loan obligations or it may entail a thorough search of local resources to assist individuals on a fixed income. Disability need not mean extreme financial stress if the process is well-planned.
Second, is a disability consideration arising out of a mood disorder or anxiety? Research has begun to show that mental health and quality of life issues account for a great deal of the burden PD brings. Depression and anxiety disorders tend to be the norm rather than the exception for folks with PD. Is it possible that consulting with a mental health professional to treat psychiatric concerns might provide you with a few more years of productivity?
Because it is a progressive disease, Parkinson’s gradually gets worse over time. It is possible to make PD worse in very short order however. Particularly when there is a Partner who is making the Person with Parkinson’s feel worse, without even being aware of it.
My client is sad but composed. She has tried very hard to make it work out and is apologizing to me for “wasting” my time. My gentle admonition that any struggle to save a marriage stressed by PD was never wasted time brings a shrug. However, we are both aware there has been a shift in the work we have been doing. It is clear that our strategy will now be one of navigating through the shoals of guilt, recrimination, and grief that are inevitable when a couple needs to divorce.
Another marriage shattered by Parkinson’s.
In a recent blog, I discussed “clognition”, a term for that rather vague collection of cognitive symptoms common with Parkinson’s disease. As yet there is no cure for “clognition” but that doesn’t mean it is completely unmanageable. To do so, we need to engage in “human engineering.”
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.