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.
Posts tagged “Blog”
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.
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.