I recently had the great privilege of participating in a weekend retreat sponsored by the Parkinson Foundation of Western Pennsylvania. The stunning beauty of the Laurel Highlands served as a backdrop for one of the most rewarding experiences of my professional career. I came to the retreat featured as a presenter but left as a student. Over the course of three days, I was able to learn volumes about the disease from families struggling with it daily.
My greatest lesson was that comprehensive care for a family with PD is very difficult to find, even in suburban areas offering outstanding neurological services. Families struggling with PD talked of receiving excellent treatment for tremor and rigidity but reported confusion about how to address a range of problems that lay outside of neurology’s domain. Foremost among these were psychiatric conditions such as anxiety and depression.
Depression and anxiety are common among individuals who have PD. Although these conditions are frequently recognized in the neurology clinic and proper referrals for psychiatric services are made, a second crucial phase of treatment is less frequently available. According to retreat participants, rarely is a referral for psychotherapy available. A substantial body of research suggests that the interaction of pharmacology and properly targeted psychotherapy can create a synergistic effect that exceeds the sum of the parts. Individuals facing the challenges of their PD without the help of a well-trained social worker, psychologist, or psychiatric nurse are missing a potentially valuable treatment component for their disease as a whole.
Of at least equal concern, these psychiatric problems are also quite common among family members living with men and women who have PD. As I have noted on this website, these individuals are also devastated by the disease but their plight is frequently overlooked. The neurologist’s focus is generally limited to the person with a compromised dopamine system. In order to get help, the Partners must often advocate for themselves. As I learned this weekend, it is extremely difficult to determine where and how the advocacy should begin.
My own profession bears considerable responsibility for the current state of affairs. Psychotherapists are often uncomfortable when it comes to dealing with chronic physical illnesses that have life altering effects. Even the aging process itself seems to intimidate the mental health field. My professional organization, the American Psychological Association, noted in a 2007 white paper that there were not enough psychologists to assist our aging population. The incidence of PD increases with aging but when its onset is early, PD itself becomes a disease of premature aging. If there aren’t enough of us to assist with navigating the aging process, men and women with PD are clearly going to be collateral victims of our reluctance to tackle the tough problems that go along with getting older.
Many of us are even more uncomfortable helping someone endure what we ourselves might clearly struggle with if the roles were reversed. I am not sure how many of my colleagues could manage remaining in a relationship that has lost its balance because of PD. Our culture’s psychology of self may have led most mental health practitioners to become adept at personal growth and self-improvement therapy. We may be less prepared to assist our clients in building upon loyalty to relationship bonds forged over a lifetime. It is hard to guide a process one has never mastered.
The Parkinson Foundation of Western Pennsylvania called this marvelous retreat “Living Well With Parkinson Disease.” For me, it was a reminder that a retreat for the professional caretaking community of which I am part would currently be called “Living, Well, With Parkinson Disease.”
Warmest regards,
Dr. Paul Short
Hey, great post, really well written. You should post more about this.
I was on the committee that planned and organized the retreat that Paul Short describes. It was a rare privilege, an honor and a pleasure to hear him speak about PD. Paul was the keynote speaker on the theme that PD is more than a movement disorder. He went on to explain that PD is also a family disease. Paul has much knowledge about PD, which he is able to share using words that are easily understood. Best of all, Paul is a person who shares his humanity with his audience. He is willing to express and show his feelings and emotions freely. Paul Short is a wonderful speaker, and I recommend him to anybody looking for a speaker about P.D. He told us that we signed him as our speaker without knowing much about him. He said we were buying a pig in a poke. I told him if that was so, we hit the jackpot.
I was diagnosed with PD 12 years ago, and I have attended support groups regularly for at least 10 years. Whenever I have a tendency to think that I have heard it all…and know it all, along comes an event like the PD Retreat, to make me realize how much I don’t know, and still have to learn. The theme of the retreat was “PD is more than a movement disorder”. I learned just how true this is. The doctors who primarily treat PD are neurologists known as Movement Disorder Specialists, (MDS). They end up treating symptoms that have nothing to do with movement disorders. Things like depression, anxiety, dementia and cognitive impairment, to name just a few. These are mainly mental conditions, not neurological conditions, that are treated by MDS by default, because there isn’t anybody else to do it. The MDS is the specialist, who treats conditions that ought to be treated by a psychologist a psychiatrist. Why should a MDS treat depression or dementia? Many of the conditions that MDS are called upon to treat have nothing to do with movement disorders. True, PD is more than a movement disorder, but it is often treated as if it were only a movement disorder. There may be other specialists who are better qualified to treat some of the non-motor conditions associated with PD than a MDS. Yet, I never hear of a MDS referring a PD patient to a psychologist for treatment of non-motor conditions. There may be times when they should.
Cool post, just subscribed.
my husband and i attended the retreat in june, and we ditto all the great compliments that tom has bestowed here. the first living well retreat at ligonier was held in 2006. we have attended all 4 retreats and can say without a doubt, dr. short is the best presenter we’ve had (and i thought we had excellent speakers each year). thank you, dr. short, for reaching out and leaving a positive imprint on each attendee in 2009.
thank you, tom, for serving on the planning committee and finding these wonderful speakers.
i am a first time blogger! thank you Dr. Short for your comments, your validation of my symtoms, and recognition of our plight to find clinical support for these mental symptoms of my PD.
as you spoke at the retreat the first day, i wanted to call out “BINGO!”, because i have all the mental issues that you spoke of. It was helpful to know that these are indeed symtoms of my PD and not “mental” weakness in my character.
It is extremely demeaning and disheartenig to hear your neurologist repeatedly tell you that you need to see a psychiatrist
but never tell you why or have an appropriate clinician to refer you to. My personal experience has been a crap shoot at best and i have come up on the losing end in a big way. I am left with two thoughts following the Wellness retreat.First how do we advocate the system for better clinical support? And secondly, I feel as if I am on a speeding locomotive with a bridge out ahead.
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