April is Parkinson’s Awareness Month. This means that the concerted efforts of the PD community will be directed at raising the profile of the disease in an effort to raise funds. As a personal coach, I like to stress that awareness begins with self-reflection. This post discusses a few aspects of PD, of which folks with young-onset should be aware. They are written in no particular order of importance.
As part of my coaching practice, I like to have clients take a look at what aspects of their lives are demanding energy from them. Parkinson’s obviously puts quite a burden on a person but it is very helpful to see what other areas of that person’s life are also taking life energy from them. When a person is able to identify where their inner resources are being directed, it is much easier to come up with strategies for responding to those problems. When the problems aren’t obvious or remain unidentified, the very human tendency is to react to them, potentially draining internal resources that might be put to better use.
The bond between doctor and patient is particularly important with a chronic disease. Unfortunately, the patient-physician relationship is a human one and sometimes things just don’t work out. In a January 14, 2014 article in the Washington Post,...
TODAY'S BLOG POST IS INSPIRED BY A READER'S COMMENT ABOUT A POST DR. PAUL WROTE ON NOV. 1, 2012, "ANOTHER MARRIAGE LOST TO PARKINSON'S".
There are several givens when we talk about Parkinsons. It is chronic. It tends to get worse over time. It is unpredictable. It is likely to be some time before medical science learns how to cure it and somewhat longer before it learns how to reverse it. And it can be difficult for another person to live with.
These are the facts you face if you enter into a relationship with a person who has the disease. These are the facts the gentleman with Parkinsons faces, as well.
I was recently asked several times to provide some explanation about the difference between early and non-early onset Parkinson’s disease. This seems a fair question given that I am, at this moment, writing a blog about the former.
My standard answer is that early-onset PD is distinguished by the stage of life at which it occurs. Women and men with early-onset PD are typically still in the portion of their life the great developmental theorist, Eric Erikson, defined as one of generativity. The best way to define this concept is to think in terms of guiding the next generation. Generativity underlies our response to “how do I make my life count?”
I had a chance to Hulu several episodes of Michael J. Fox’s new sit-com this weekend and walked away very impressed with what the show is not. It is not a program in which Parkinson’s disease is a character. It is not a show in which PD drives the plot. And it is not a vehicle for educating the audience about the disease. Rather, this eponymous show that marks the return of a talented veteran actor to the television screen has turned its “nots” into a program folks dealing with PD should give a try.
I got a lot of response to one of my recent Tweets (@PDpsych):
"The best way to drive away those you love is to project your anger w/PD on them. Helping you cope & taking the heat are not the same thing."
Finding yourself forgetting things you promised the kids or your boss you would do later in the day? Got it on your to do list but still dropping the ball because you forget to check the list? Noticing that you are not taking your medication until your PD screams at you that you missed your scheduled time? Blame it on changes in your prospective memory...
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.